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Executive Summary: Participation Model for Personal Supports

TABLE OF CONTENTS

EDITORIAL: BUILDING AN INCLUSIVE AND ACCESSIBLE CANADA DECLARATION TO CREATE AN INCLUSIVE AND ACCESSIBLE CANADA

FIRST HUMAN RIGHTS TREATY OF 21ST CENTURY FOR DISABLED PEOPLEINDEPENDENT LIVING MOVEMENT: A CROSS-DISABILITY PERSPECTIVE"WHY WE MEED AN ENFORCEABLE RIGHT TO INDEPENDENT LIVING""WE ARE NOT SICK; WE KNOW WHAT WE NEED"BOOMERS ARE RENOVATING WITH "GOLDEN YEARS" IN MINDMOVING EXPERIENCEASSISTIVE DEVICES IN SIGHT FOR BRITISH COLUMBIANSNEWER VISION SOUGHT FOR VISUALLY IMPAIRED

CONFESSIONS OF A SIGHTED CANE TRAVEL INSTRUCTOR

FROM CANE TO CANINETHE BEST CHOICE I COULD HAVE MADESUCCESS IN EDUCATION: IS MAINSTREAMING ALWAYS THE ANSWER?PROPONENTS SAY THE DECLINE IN BRAILLE INSTRUCTION IS LEADING TO ILLITERACYSTAYING THE COURSEBLIND LEADING THE SIGHTEDDETERMINATION CRYSTAL CLEARFINDING A HOME WITH LOVEPARENTS WITH DISABLED CHILDREN NEED TO THINK AHEADEARLY CHILDCARE TECHNIQUES OF ONE BLIND MOTHEROPENING UP THE WORLDLIVING WITH MULTIPLE DISABILITIESTOWN STILL HASN'T GRASPED ISSUES OF ACCESSIBILITYMAGIC TRAIN CHUGS ALONGTACTILE GUIDANCE SYSTEM INSTALLED ON MRT TO HELP THE VISUALLY HANDICAPPEDLOTOS WORKS TO IMPROVE ACCESS TO RECENT PARLIAMENTARY ELECTIONS IN AZERBAIJAN FOR AZERI CITIZENS WITH DISABILITIESPRESIDENT’S REPORT: NEW CHALLENGES AND OLD CHESTNUTSIMPRESSIONS OF THE AGM AND MY STAY IN KELOWNA2006-07 AEBC BOARD OF DIRECTORSHIGHLIGHTS OF RECENT AEBC ACTIVITIESNEW RESOURCESMEMBERSHIP/SUBSCRIPTION FORMS

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EDITORIAL: BUILDING AN INCLUSIVE AND ACCESSIBLE CANADABy: John Rae

"There are no insurmountable obstacles to prevent Canada from taking a World Leadership Role in providing disabled persons with the practical means for greater independence."--Obstacles Report, 1981

In the early 1980's, a conscious decision was made in Canada to divide group and individual advocacy. Thus, the Disability Rights Movement, led by the Council of Canadians with Disabilities (CCD), focuses on changing legislation and policies, while the Independent Living Movement, coordinated nationally by the Canadian Association of Independent Living Centres (CAILC), focuses on consumer-directed service provision.

Initially, many consumer-directed services were established partly as a direct response to traditional service providers of the rehabilitation industry, where persons with disabilities generally have little or no say over the services offered, or the ways in which they were provided.

Today, there is a network of over 25 Independent Living Centres from coast to coast in Canada that offer a variety of services to Canadians with various disabilities, including individuals who are blind, deaf-blind or partially sighted.

Both movements assert strongly that environmental, communication and attitudinal barriers--and not the disability itself--are the major causes of the exclusion and marginalization from regular community life that is the reality for so many Canadians who have any disability.

To live independently with dignity and to be able to participate fully in all aspects of regular community life, we need the provision of a range of disability supports including coverage of the costs of needed assistive devices; full access to the built environment; availability of reliable public transportation; construction of housing that all can use, regardless of age or physical condition; availability of mobility training; publication of information in formats that all can read; and most of all, we need improved public attitudes and urgent and immediate relief from the chronic level of poverty that remains the reality for so many Canadians who live with a disability in this affluent country.

It's amazing how so many simple, cost-effective solutions for access benefit everyone. Elevators and curb cuts help people with strollers and carts. Television captions allow people to watch TV without disturbing anyone else. Website content that is designed for blindness or other disabilities is cleaner and easier to use.

On November 2, 2006, CCD and the Canadian Association for Community Living (CACL) convened leaders of the disability community in Ottawa to celebrate the achievements in advancing the status of Canadians with disabilities over the past 25 years, and to provide a forum to share current thinking on two key social policy issues: the idea of a Canadians with Disabilities Act, and Exploring the Issues of Poverty and Disability. "A Declaration to Create an Inclusive and Accessible Canada" was formally released (found elsewhere in this issue).

Since publication of the 1981 Obstacles Report, numerous other reports have been released. In most areas, the research is in; the case for inclusion has been made; and it's time for governments at all levels, employers and the community to truly accept persons with disabilities as a growing reality of each community.

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For our part, persons with disabilities are one of the most adaptable groups in our society. We want to participate side by side with everyone else, to earn a decent income, to participate in community life, and to raise a family.

It's time that governments at all levels showed the leadership that is so desperately required, and provided us with the tools we need to make our dreams come true!

DECLARATION TO CREATE AN INCLUSIVE AND ACCESSIBLE CANADA

Editor’s Note: This declaration is reprinted from the End Exclusion website: www.endexclusion.ca/english

Our Vision of An Inclusive and Accessible Canada is guided by the principles and values of full citizenship through:

Equality; Self-Determination; Accessibility;

United in our belief that Canadians with disabilities have equal right to full inclusion and citizenship and that Canadians with disabilities are valued contributing members of our communities;

Emphasizing that disability is part of human diversity and should be celebrated as such;

Concerned that Canadians with disabilities and their families continue to face significant barriers to their full citizenship;

Aware that exclusion and a lack of access to disability supports perpetuate the unemployment and poverty of people with disabilities, and their families;

Further aware that exclusion can be compounded by gender, age, aboriginal status, culture, race, ancestry, sexual orientation and other differences;

Recognizing that all levels of government have a duty to facilitate the active citizenship and full inclusion of persons with disabilities;

Inspired by achievements of the past 25 years and the broad consensus that substantive change is still required;

Acknowledging the need to work together to develop partnerships between all levels of government, the disability community and civil society;

And therefore, celebrating the 25th anniversary of the International Year of the Disabled Persons and the first national Parliamentary report Obstacles, and the many achievements of the last 25 years;

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http://www.endexclusion.ca/


Convinced that a long-term national disability strategy to create change is essential to address the poverty, the lack of disability-related supports, and the unemployment of Canadians with disabilities;

We commit to Creating an Inclusive and Accessible Canada where all Canadians with disabilities have the disability-related supports necessary to fully access and benefit from all that Canada has to offer.

We commit to working together to remove barriers and ensure the active citizenship and full inclusion of Canadians with disabilities.

FIRST HUMAN RIGHTS TREATY OF 21ST CENTURY FOR DISABLED PEOPLE

Editor's Note: This press release from the Human Rights Commission is reprinted from Scoop Media, New Zealand, August 28, 2006: www.scoop.co.nz

The Human Rights Commission today welcomed the news that a United Nations committee has reached agreement on a Convention on the rights of disabled people.

Finalized in New York on Saturday, the Convention, when adopted by the United Nations General Assembly, will be the first human rights treaty of the 21st Century.

Chief Commissioner Rosslyn Noonan acknowledged the leadership provided by the New Zealand government and its delegation throughout the drafting process and by New Zealand ambassador, Don MacKay, who chaired the ad-hoc committee.

"Don MacKay gained worldwide admiration for the way he managed negotiations and the Disability Issues Minister, Ruth Dyson, is to be congratulated for ensuring New Zealand supported him throughout the process."

Ms. Noonan said today that the challenge for New Zealand now is to ensure that its domestic performance matches the international leadership it has provided.

Key issues that need to be addressed include:

* Action on public transport--a comprehensive approach to ensure accessibility.

* Greater participation in decision making by disabled people, particularly in relation to provision of services, especially residential services.

* Support for New Zealand Sign Language and braille users to enable them to fully participate in all aspects of New Zealand life.

* Fully inclusive educational provision and the resourcing for it to be delivered.

Countries that sign up to the treaty will have to enact laws and other measures to improve disability rights. They will be obliged to combat negative stereotypes and prejudices and to promote an awareness of people's abilities and contribution to society.

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Other measures under the treaty include guaranteeing that disabled people have a right to life on an equal basis with others and that access to public spaces, buildings, transport, information and communications is improved.

The treaty is expected to be adopted by the UN General Assembly during its next session, which starts in September.

INDEPENDENT LIVING MOVEMENT: A CROSS-DISABILITY PERSPECTIVEBy: Christine Malone Editor's Note: Christine Malone is IL Impact Project Manager, Canadian Association of Independent Living Centres (CAILC). The Canadian Independent Living Movement and the Canadian Association of Independent Living Centres were founded on five principles: consumer control; cross-disability; striving to create situations where full participation and integration of all people with disabilities is possible; community-based; and not-for-profit. As CAILC now approaches its 20th anniversary, they are examining the implementation of these principles, specifically the fundamental value of being cross-disability: Is the Canadian Independent Living Movement meeting the needs of consumers with vision disabilities? Through examination of the history of Independent Living (IL), the involvement of persons who are blind or partially sighted in the IL Movement, and some of the steps taken to ensure responsiveness to the needs of consumers, it is clear that the Movement and CAILC are able to address a variety of concerns for persons who live with a vision disability. History of Independent Living in Canada: The philosophy of IL has its roots in Berkeley, California, where a group of students with disabilities wanted to live independently, rather than in an institutional setting. It is an idea that took hold across California, and by the late 1970s had spread across the United States. Around the same time, Canadians with disabilities began to learn about Independent Living and the IL Movement. In 1980, the IL philosophy was introduced by Gerben DeJong at a Coalition of Provincial Organizations of the Handicapped (now known as the Council of Canadians with Disabilities) Conference. In 1981, three events were central to the development of the IL Movement in Canada: (1) the United Nations declaration of the International Year of Disabled Persons; (2) the release of the Canadian government's Obstacles Report; and (3) the personal commitment of Allan Simpson, Henry Enns and other disability leaders to the IL philosophy. Each of these autonomous developments provided legitimacy to disability issues at the national level and, equally important, ensured the promotion of the IL Movement to a cross-section of government officials, organizations, academics and concerned individuals. By 1985, through the assistance of a number of organizations such as the Mennonite Central Committee, five Independent Living Resource Centres (ILRCs) were operating (or in the development stages) in cities across Canada: Waterloo, Winnipeg, Thunder Bay, Calgary and Toronto. In May of 1986, at the first IL conference in Ottawa, CAILC was formed to act as a national coordinating body for the IL Movement, and a formal definition of a Canadian ILRC was developed. This Canadian definition was important because, while IL emerged in the United States, the Canadian movement was distinct. This new definition formalized the differences between the Canadian and U.S. movements.

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In the United States, the IL model promotes collective advocacy, as well as a greater emphasis on an alternate method for the delivery of services. By contrast, through CAILC, the Canadian movement has focused on individual skills development and disability-led initiatives. In Canada, IL has been about empowering the individual to take risks, make decisions, and to assume control over their own lives. There are now 28 ILRCs located in communities across Canada--in both rural and urban areas and in English and French Canada. Involvement in the IL Movement: As a cross-disability organization, CAILC understands the need for representation of many different types of disabilities, and values the various perspectives brought forward. In fact, this has been described as being the heart of the movement. Even though there are many differences among specific disability groups, the IL Movement can provide a vehicle for all to come together and support each other. The involvement of members from the blind or partially sighted community has been seen throughout the history of the IL network. Many individuals have provided leadership to the movement in Canada on CAILC's national and local boards, as staff, volunteers and as centre members. Within the CAILC office itself, having staff members that are closely tied to the blind or partially sighted population, both within and outside the IL network, heightens awareness of various issues. According to Mike Murphy, Executive Director of the Kingston ILRC, "People who are blind or visually impaired are in the IL Movement because they see value in the movement. Engagement in IL is a vehicle for accessibility."

The involvement of these individuals gives the necessary consumer direction and adds to the leadership within the movement on local and national levels. In addition, CAILC continues to evaluate their programs and ability to meet the needs of all people with disabilities. Is the IL Movement responsive enough to the needs of the consumer who is blind or partially sighted at a grassroots level? The key to evaluating centre effectiveness is knowing that ILRCs cannot work in isolation. The ideas of consumer control and the need for partnership and collaboration have long been recognized as being essential for individuals to actualize the IL philosophy. According to John Lord, well-known writer and researcher on disability issues, "If the core programs at an Independent Living Centre are working, they build bridges for people with disabilities to become full participants and full citizens in their communities." If the role of an IL centre is to support an individual to have control and decision-making power, then it often involves a great deal of networking within the community to assist in that process. Frequently this process includes connecting an individual with disability-specific supports and services. More involved than just a referral, this is a building or continuation of a relationship between organizations. To avoid duplication of services, a team approach should be taken, allowing for sharing and education among the groups. This allows the individual to have information to make informed choices. This cooperation is vital, as centres often work with individuals with multiple disabilities. For example, a person identifying as having a physical disability because of Multiple Sclerosis may need connection to services with the occurrence of vision loss over time. It may be the ILRC that can offer the facilitation role in providing a continuum of support. At a national level, the importance of working with those with the expertise and experience is recognized. This is evident as we move into new areas of technology. We learn not only from

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within the network, but also draw on the resources of our community partners, such as the Alliance for Equality of Blind Canadians and others, by having them participate in various advisory committees and panel discussions. Such input allows for new insights and increased awareness, as well as ensuring greater community involvement. As a national organization, CAILC and its member ILRCs have worked on making our services totally accessible. For a number of years, CAILC documents have been available in alternative formats as seen in CAILC policies and materials presented at the Annual General Meetings, for example. The recent addition of a trained braillist to the CAILC staff will assist in the process, as documents can be adapted in a more timely manner. As the national voice of the IL Movement, the CAILC office increases its accountability and accessibility by testing and standardizing its internal systems and website, making them more accessible and user-friendly for both consumer and staff. This new accountability is seen on a local level as well. In 2005-2006, we saw the introduction and implementation of a formal accreditation system for all member ILRCs. An important part of this process is a centre's ability to demonstrate accessibility of services to all consumers, emphasizing the need for a cross-disability perspective. This is also an opportunity to demonstrate community connections in working with people, and taking a solutions-based approach to issues, allowing all to move forward. Through the accreditation process, the national office is able to monitor cross-disability services and ensure access to all. Centres must be able to demonstrate these services to remain accredited. Conclusion: When reflecting upon the work and impact of the IL Movement over the past two decades, we can see some of the steps forward and lessons learned. The five principles on which the movement was based are still relevant today, perhaps none more so than the principle of being cross-disability. Sandra Carpenter, former CAILC Chairperson, said, "The differences between individuals can only make the movement stronger, as ILRCs and consumer groups can divide and share tasks and support one another." It is with this idea in mind that the Canadian IL Movement addresses a variety of issues for members who live with vision disabilities. These people have been directly involved in the history and development of the IL Movement in Canada. This involvement, together with accreditation standards and the fundamental principle that the movement must be cross-disability, has ensured that CAILC and the ILRCs themselves continually strive to meet the needs of persons with a vision disability. Can we do more? Absolutely! Individuals who are blind or partially sighted are always welcome to identify ways the ILRCs and CAILC can improve their services. The movement relies on the involvement and input of individuals in a variety of roles to ensure that we remain relevant and responsive to the diverse needs of the community. "WHY WE MEED AN ENFORCEABLE RIGHT TO INDEPENDENT LIVING"By: Jane Campbell

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Editor's Note: Jane Campbell, then Chair of the Commission for Social Care Inspection and DRC Commissioner, delivered this keynote speech at the DRC (Disability Rights Commission) Public Debate: The Right to Independent Living, March 2, 2004.

Independence is something we all strive for, for it gives us confidence to tackle life's challenges. To me, Independent Living is inextricably linked to FREEDOM.

To withdraw or prevent an individual's independence must therefore be considered a punishment; after all, that's often how parents discipline children (you're grounded) or society deals with criminals. To this end, I would contend that Independent Living is a fundamental human right of disabled people, and to deny it is tantamount to punishment.

And what is the crime? To be too expensive to support in the community? Or to be over six stone--too heavy to lift? Sometimes it feels like we are being punished for shortcomings of a social care system that finds it almost impossible to respond flexibly to meet Our Independent Living need.

On 2nd October 2000, when the UK government introduced the framework to take cases under the Human Rights Act, the then Home Office Minister, Jack Straw, said the intention was to do more than require government and public authorities to comply with the European Convention. "Over time," he said, “the Human Rights Act will bring about the creation of a human rights culture in Britain." Disabled people have much to gain from the philosophy of personal freedom and equal dignity that underpins the European Convention on HR, as it fits well with the fundamental principles of Independent Living.

So what are these fundamental principles of Independent Living as developed by the disabled people's Independent Living Movement?

Most people think it means “doing things for yourself”, for example, cooking your own breakfast, driving your own car or washing your own hair. Whilst, for some, this may be an important feature of their personal independence, for many others it is not. For many disabled people, the effort of achieving such physical independence traps them in a lifestyle of unceasing hard work that simply curtails independence.

"Independent Living" means that disabled people have access to the same life opportunities and the same choices in every day life that their non-disabled brothers and sisters, neighbours and friends take for granted. That includes growing up in their families, being educated in the local neighbourhood school, using the same public transport, getting employment that is in line with their education and skills, having equal access to the same public goods and services. Most importantly, just like everyone else, disabled people need to be in charge of their own lives, need to think and speak for themselves without interference from others.

Here are some examples of disabled people's definitions of Independent Living:

* Independent Living is a dynamic process. It is about creating choices and identifying solutions. It is a way of life that grows as you grow and develops as you develop. (John Evans, quoted in Making Our Own Choices)

* I'm a husband, a father and a breadwinner. And ten years ago I was in an institution where you couldn't even decide when to go to the toilet ... You know, you can't really understand [Independent Living] if you haven't done it ... Your whole life changes. ("Jack" quoted in Independent Lives by Jenny Morris)

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* Independent Living is the concept of the empowerment of disabled people and their ability to control their own lives. (The National Centre for Independent Living)

* Independent Living is speaking for myself. Deciding where I go and what I do. (People First, London)

My own definition is that Independent Living is a state of mind, rather than a mental or physical capability.

In order to reach the same control and the same choices in everyday life that non-disabled persons take for granted, a number of prerequisites are necessary. For many physically disabled people like myself, the most important Independent Living requirements are personal assistance and accessibility to the built environment--accessible housing, for example. For other disabled people, perhaps those with learning difficulties or impairments that make communication difficult, advocacy and communication support are more critical. Without such services and environmental change, hundreds of disabled people can only choose between being a burden on their families or living in an institution, both of which run counter to the concept of Independent Living.

Services that support the development of Independent Living like Community Care Direct Payments, and the Independent Living Funds, are the result of a long historical campaign for alternatives to institutionalization--whether in care or at home. It is too easy to forget that there are people who are effectively “institutionalized” in their own homes because they haven't the means to go further than the front door, or worse still, their beds.

Under the existing framework, disabled people can in fact direct their personal assistance support in a way that suits their chosen lifestyles. In practice, however, professionals in the health and social services find it difficult, if not impossible, to apply the philosophy of Independent Living when it comes to community care assessment. This is because existing community care policies and services place undue emphasis on assessments by “social care experts”, of a person's “vulnerability” and the potential risks, which they pose, either to themselves or to others.

The idea that disabled people are “vulnerable people” who need to be protected and “cared for” only serves to reinforce perceptions of disabled people as passive “recipients of care”, rather than active citizens facing practical barriers to Independent Living. Assessing need through a filter of vulnerability produces the wrong solutions.

The “care” approach to assessment is also based on a functional view of independence. As Ann Macfarlane puts it, "IL means more than being able to make yourself a cup of tea and feed the cat."

The dominant model does not view people who use support services as fully rounded human beings, with the same needs and aspirations as everyone else. As Gerry Zarb said in his paper to the European Network on Independent Living (ENIL) conference last year:

"It's more like that they are implicitly viewed as mere 'vessels of care' that--putting it crudely--you feed at one end and clean up at the other!! (Sorry, but it makes me angry)."

The Independent Living Movement has been pushing for new ways to assess a person's support requirements. These are to be based on a social model approach that identifies the barriers to participation rather than an individual's physical or mental incapacity. A social model approach is

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strengthened by the Human Rights Act because rights such as the Right to Liberty, the Right to Respect for Private and Family Life, and the Right to Freedom of Movement are inextricably linked to attitudinal and environmental barriers.

However, even with an assessment based on minimizing the barriers to participation, there will always be disabled people whom, in order to exercise choice and control over their lives, require advocacy and other supported decision making resources, to better enable access to services. Such resources are essential to enable people access to their human and civil rights.

Without advocacy and other Independent Living support services, many people--especially older disabled people--will “choose” the residential care option because they do not see any viable alternatives, and/or because they are called upon to make such decisions in a time of crisis. By default, most adult disabled people of any age will accept a traditional assessment of their need.

There is also a pressing need for access to advocacy for people who are already living in institutions. Although National Care Standards are supposed to require examination of options for leaving residential care as part of the review process, the evidence demonstrates that this is not adhered to routinely.

Advocacy services are often found in Centres for Independent Living (also known as CILs). CILs are community-based organizations that are controlled by disabled people and provide a range of services that improve our access to Independent Living. CILs help us exercise our right to participate equally; to remain in the community. The right to a family life and parenthood has been central to CIL activity. The larger CILs encompass access to all aspects of society, including mainstream education, training, employment, welfare and support services, housing, transport, public buildings, leisure and information.

There are 15 CILs in the UK and a number of similar organizations who provide roughly the same kind of services although they do not call their organization a CIL. These centres for Independent Living have been a critical network for supporting Independent Living over 20 years.

AND YET, despite most people’s intellectual acceptance that Independent Living is a fundamental human right, disabled people still find themselves living in institutional settings against their will. As so often happens in all walks of human endeavour, the gap between words and action must be narrowed.

The housing support charity, John Grooms, reported last year that 8,000 young adults are living in care homes primarily designed for older people. Between 1997 and 2002, the number of people with physical and sensory impairments in local authority supported residential and nursing care showed a modest decrease from just over 10,000 to just under 9,000. For people with learning difficulties, on the other hand, there was an increase of nearly 20% from 25-1/2 thousand to more than 30,000. The figure for users/survivors of the mental health system or the psychiatric system is even more dramatic, rising by more than 40% from about 8,000 to above 11,000.

The Valuing People Support Team also estimates that there are still around 1,200 disabled people in long-stay hospitals (Personal Social Services statistics). While acknowledging that some disabled people, after considering all personal support options, choose to receive their support in a residential setting, I think it is deeply troubling to note that there are nearly 300,000 people supported by local authorities in institutional care, and less than 8,000 people currently receive direct payments to enable them to live independently.

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Why is this? Well, mainly because the funding structure of the community care system creates a financial incentive for the use of institutional care. If this is not the entire answer to the question "Why", it is certainly the main one. There are significant numbers of disabled people who have attempted to leave residential care, only to be told their support costs more than their “placement!”--that they exceed the Local Authority “usual cost policy”.

Strangely enough, the more familiar local authorities become with Direct Payments and notions of independence, the more they seem to lay down policies whereby these so-called “expensive” users have little option other than to return to, or stay in, residential care.

I will give you an example of a woman who lives in an authority where they have taken analogous care cost very literally. She had been living in one room in a home for five years. The local Centre for Independent Living had worked with her to put together a personal independent living scheme. She had found a flat, assessed her needs in partnership with her social service care manager, prepared herself diligently for employing Personal Assistants, doing everything from preparing job descriptions to learning PAYE. At the eleventh hour the Local Authority pulled out because the Direct Payment was going to cost the authority £130 more per month. She is still living in that room.

Residential care is often only cheaper because it provides a lower level of support. The example above highlights how much more, and better quality support, she and the local authority would have got for an extra £30 a week. I would say that is good value in comparison with warehousing her in a home.

As research has demonstrated, Independent Living cannot simply be accounted for in terms of Unit Cost Comparisons. Is no one figuring the long-term cost benefits of such individuals living and contributing to their communities? How many people are we really talking about? Who is costing the social and psychological benefits of Independent Living?

Prof Lord McColl, in a House of Lords debate (during the passage of the Direct Payment Private Members Bill), drew our attention to the fact that disabled people who live in the community are a lesser drain on health care services. They present fewer high cost health issues--kidney infections, chest infections, stress-related illnesses, were but a few of the examples he cited.

In the recent “Olmstead” case, the Supreme Court in the United States ruled that unjustified isolation or segregation of disabled people through institutionalization is a form of unlawful disability-based discrimination. The Supreme Court also ruled that Federal Government has an obligation to provide funding to keep people out of institutions.

The Disability Rights Commission believes that there are important lessons to be learned from this landmark ruling in the U.S. and that the principles it has established are equally relevant here.

The government is very busy right now developing the Single Equality and Human Rights Commission (expected to come into force in 2006). This could be the perfect forum to establish a body empowered to take up HR cases. Perfect, except for one major consideration: The challenge is to shift their emphasis from promotion of human rights to enforcement!

Conclusion: The arguments for a right to Independent Living are complex but vital. As I have said earlier, there are several tasks to be initiated or developed and funded.

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Firstly, there is an urgent need to commission the cost benefit analysis work, which I believe will provide evidence in the long term that Independent Living will bring down the cost that dependency brings to health care and welfare benefits.

Second, a right to Independent Living needs to be enshrined in a new fully comprehensive Civil and Human Rights legislation.

Third, the government needs to commit to a minimum level of expected provision. This needs to be set a level where no one is forced to enter residential care against their will, no one is forced to become an "informal" carer for lack of any alternative, and no one has to turn down a job because they cannot afford to pay for the assistance which will get them to work. Significantly, this also means that the government has to abandon the idea that there is "a point at which the cost of Independent Living becomes prohibitive".

Finally, there needs to be a change in the way providers/commissioners work with users. This means respecting the view and voice of the user, and taking for granted that the objective is to meet user-defined needs. This change has begun but there need to be more rewards to practitioners who demonstrate achievement in the following areas:

* Adherence to a social model approach to assessment of need.

* Ability to operate comfortably with disabled people's dignified risk-taking.

* Ability to adapt the jobs that need doing (e.g., lifting people onto the toilet) rather than forcing users to adapt to restrictive working practices.

* Have a greater knowledge base of Independent Living.

* Ability to communicate in different ways--e.g., British Sign Language, Makaton, pictures, braille etc.).

By acknowledging and addressing these tasks and capabilities, I promise you we can enrich society in myriad ways, as well as improve the moral and physical health of the nation.

There is a growing expectation for this approach from disabled people, not just in this country, but across Europe and beyond. Last year hundreds of disabled people from across Europe made the journey to the European Parliament in Strasbourg. It was called the “Freedom Drive”. This Freedom Drive originated from the European Network on Independent Living (ENIL), and is supported by Independent Living organizations across Europe.

The purpose of the Drive was to foster, and support, the active citizenship of disabled people in the European Union. Among the demands made by the delegation when they met with MEPs in Strasbourg were:

* Action to address the growing number of disabled people being institutionalized. * Promotion of the appropriate implementation of the philosophy of Independent Living. * Action to highlight and address the significant human rights abuses that many disabled

people experience.

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The time is right, the expertise is available, the case has been made for Independent Living. It’s now up to us all, across professions and interest groups, to work together for it to become reality for all disabled people regardless of impairment.

Thank you.

"WE ARE NOT SICK; WE KNOW WHAT WE NEED"By: Helen Henderson

Editor's Note: The following article is reprinted from the Toronto Star, June 3, 2006.

"The consumer has the problem ... also the solution. What we need is somebody to enforce the solution so that I will never again be left lying in bed, helpless, neglected, desperate."--Bridget Young

There's a lot more work to be done but it looks as if Ontario may take a step toward recognizing that people with disabilities are able and willing to take charge of their lives. The subject is at the heart of an inquiry into whether the province should move to regulate an increasing number of service professionals, including the men and women who help people who move and communicate differently go about the business of daily living.

Most personal care workers are respectful of the people they help with bathing, dressing, preparing meals and so forth. But the risk of abuse is always there. The question is would regulating the profession reduce that risk or merely increase the bureaucracy? A preliminary report from the Health Professions Regulatory Advisory Council suggests personal support workers will remain outside the constrictions of government regulation--which is good news for many people with disabilities who have made that point in submissions and appearances before public hearings.

"There is a large and distinct segment of the population, myself included, who are getting on with our lives whilst coping with severe physical impairment," Hazel Self, a former registered nurse who injured her spinal cord almost 30 years ago, wrote in a letter to the council. "We call it maintaining our independence, having choice and control and being in charge of our lives. We are not sick; we know what we need."

Self, a long-time advocate for independence and former president of the Centre for Independent Living in Toronto, wrote, "My attendants are highly qualified; they have a listening ear, they acknowledge my expertise, they have a pleasant attitude and a respectful manner, they are trustworthy and reliable.

"These attributes are not gained by having a (personal support worker) certificate or nursing training, as the sad litany of disciplinary actions attests to. I find these attributes in my neighbour, the salesgirl who helped me try on clothes, the daughter of the superintendent of my building, and others whom I have met over the years and hired as attendants."

That being said, no one would argue that there's a lot of room for improvement around the issue of attendant care and personal support. Ideally, people with disabilities would like to see a system in which they have some mechanism for quality control and an effective complaints system.

For many, a good first step would be the expansion of Ontario's direct funding project, which gives those who qualify the money to hire and schedule attendants of their choosing.

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"We believe the key to reducing harm lies with empowering the service user," says Sandra Carpenter, program manager at the Centre for Independent Living. "Attendant services must be viewed as a disability accommodation, not a health service."

But the current direct funding program funds only a maximum of six hours assistance a day.

"We need that maximum raised to at least nine hours daily," Bridget Young told the advisory committee's public hearings in Toronto last week. "We all want higher quality," said Young, who also spoke on behalf of Anne Abbott, another determined advocate for improved attendant care services.

"If standardization of education and the certification process will result in better quality, then so be it. Certainly, at the very least an obligatory national registry of all (personal support workers) should be implemented so that they can be tracked, reported, rewarded, etc."

Young also emphasized the need for accountability and the right of people with disabilities to live without fear of reprisals if they complain about service. Current rules state "that I am allowed to participate in my service plan so that the plan is designed to suit my needs," she told the advisory council. "In reality ... if I try to complain or make changes, I am labelled the problem."

Last month, in its preliminary report to Ontario Health Minister George Smitherman, the Health Professions Regulatory Advisory Council said consultations with groups representing people with disabilities indicated that "dignity, independence and choice" were fundamental to their needs.

It indicated these fundamentals were better served if personal support workers were not regulated. But it also noted "a general interest in creating a registry of PSWs ... maintained by a central body, accessible to employers wishing to hire PSWs (and) a resource for employers performing reference checks."

The advisory council expects to make final recommendations in September. For more information, see: www.hprac.org

Email: [email protected] Reprinted with permission--Torstar Syndication Services.

BOOMERS ARE RENOVATING WITH "GOLDEN YEARS" IN MINDMany Making Adjustments to Grow Old in Their HomesInstallations of Grab Bars, Raised Toilet Seats on the IncreaseBy: Vicky Sanderson

Editor's Note: The following article is reprinted from the Toronto Star, May 29, 2003. It can happen like this: Looking in a store window, you find yourself staring at a middle-aged woman who reminds you of one of your parents. But it's March, and your parents are in Florida. The realization dawns. That parental look-alike is you. Aging is inevitable, and DNA will do its work.

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At least you're not alone. Canadians as a whole are getting older. In less than two decades, half of all Canadian households will be headed by people over 55. Like generations of oldsters, this bulging demographic group will want to grow old in their own homes. With a little foresight, that's a reasonable option, especially for the large number of homeowners who plan to renovate over the next few years. Victor Helfand is the owner of Barrier-Free Architecturals, a Toronto company that sells senior-friendly home-improvement products, such as raised toilets, grab bars and shower seats. He's been in business for three and a half years, and he says that his clients increasingly include middle-aged people renovating with an eye to the future. Jim Wolff, owner of Wolff Construction in Thornhill, is now installing grab bars in about half the bathroom renos he does now for boomer clients. That's a huge jump over the last five years. Helfand says that more and more people are opting for shower stalls without lips because, in 15 years, the room may have to accommodate a wheelchair. Shower seats are also becoming more common. (Admit, even pre-old age, wouldn't it be nice to sit down in the shower to shave your legs or attend to foot care?) Other senior-friendly options include tilted mirrors (better for those in wheelchairs), or a "soft" bathtub made of acrylic and foam, so that a fall in the tub won't be deadly. Cathy Solman is only 50, but when she decided to renovate the main bathroom of the Pickering home she's had for almost 20 years, she chose to add a grab bar, raised toilet and whirlpool. "The whirlpool isn't really that senior-friendly, although it's awfully good for relaxing tired bones at the end of the day. But the raised toilet and the grab bar are for safety and comfort--things you need to be aware of past a certain age," she says. In the kitchen, Helfand suggests adding extra lighting in work areas for weakened eyes, and installing lower light switches and non-slip flooring. If money is no object, about $2,000 will buy you a mechanism that will raise and lower five feet of cupboards at the touch of a switch. "It's a great idea for seniors," says Helfand. "I certainly thought about installing one for my mother when I found out that she was climbing on top of the kitchen counter to reach her Passover dishes!" Other tips include making doorways wider, eliminating thresholds, and ensuring that entry to the house is level. Faucets should have central controls; they're easier for arthritic hands to move up and down. Knobs that glow in the dark can be added later. While adding the basics needn't add inordinate costs to a reno, Jim Wolff says not everyone is ready to renovate for their golden years. "I try to convince people that it's a good idea to install a grab bar, or at least lay down a piece of plywood under the drywall and tile," he says. "Some aren't sure. But it makes sense. A kitchen or a bathroom renovation can cost a lot of money. Middle-age people who have paid off their mortgage can spend money like crazy on extensions or refinishings. Why not make it work for you for a long time?" Barrier-Free Architecturals is at 2700 Dufferin St. (at Castlefield), 416-783-5331.

Wolff Construction in Thornhill can be reached at 905-509-5048.

MOVING EXPERIENCEAs the Population Ages, More People Face a Housing Dilemma--Remain in Their Family Home or Move to a Residence Where Someone Else Does the Cooking?

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By: Pedro Arrais

Editor's Note: The following article is reprinted from the Victoria Times-Colonist, June 7, 2006.

How do you know when it is time to pack up a lifetime of memories, sell the family home and move to a seniors' residence? As life expectancy approaches 79.9 years for men and 82.4 for women in Canada, according to Statistics Canada, the question gets asked more often.

A large number of seniors start to consider a life change when they lose their spouse. According to retired palliative-care physician, Dr. Mary-Wynne Ashford, sickness or death of a spouse can have a profound effect on seniors. "Not only are they losing their present--they are losing their past."

Jane Dewing is a moving consultant with 25 years in the housing industry and owner of Changing Places, a one-person business that helps clients, mainly seniors, make housing choices and changes. "There is no 'Ah-hah' moment that tells an individual that it is time," says Dewing. "You can use any checklist you want, but in the end every person is different."

Some essential points to consider are:

-What type of care you need now--and in the future?

-Do you want a private or community setting?

-Do you want to stay in the same neighbourhood?

-Compare services offered as part of the rent.

-Do you qualify for subsidized housing?

-What are the extras and how much should you expect to pay for each?

-How many meals are offered? Is there any accommodation for special meal requirements?

-Are there any restrictions on pets? Smoking?

-Ask if there is a security deposit charge.

-Check to see if the activities offered are what interest you.

-Check with friends or other referrals.

-Take a free tour of residence.

-Ask about trial stays at residences that you are considering.

But even if the time is right, the decision is never easy. Most people try to stay in their homes as long as they can, relying initially on family and then non-profit and private care providers to take over personal care and homemaking.

Charlotte St. Clair, 81, and her husband, Vic, who is 89, considered a retirement residence but settled on renting in an adult-oriented apartment building. "I talked it over with my husband and

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family and I felt I can still live in an apartment with just a little help with cleaning and personal care," said St. Clair. "I don't need somebody cooking for me all the time." She downsized into a two-bedroom in a quieter building in a different part of town from a three-bedroom they were in. They say they're settling in nicely.

The final decision may be based on simple economics, a desire to be closer to family, or health issues that require some type of medical supervision or monitoring. Adult children of seniors can also be an important influence as they see subtle changes in their parents. It can be a difficult and trying time as a senior wrestles with a fear of losing independence.

Seniors' housing choices range from independence to intermediate care to full care. The trigger for residential care is when the facilities stop referring to their offerings as apartments and start calling them beds. Care options are:

-Abbeyfield houses--An inexpensive option for the social senior, run by a non-profit organization. Residents have their own rooms but share washrooms, kitchens and living areas. Meals are prepared by a house manager.

-Independent Living apartments with a combination of housing and hospitality services. Residents generally have the option of housekeeping, laundry services and the number of meals they require. Independent Living can include rented, owned and life-lease options.

-Assisted Living--Residences offering a wider range of personal support services such as grooming, bathing or taking medication. Residents can still direct their care but need some assistance. Some facilities have nurses and 24-hour emergency response to medical emergencies.

-Residential Care--Adults living in this setting require assistance with activities of daily living. This type of accommodation includes intermediate care, extended care and private hospitals. A senior's financial situation has a bearing on the choices available. Those who have owned real estate are often more fortunate because they can use the funds from the sale of their house to pay the rent. Low-income adults--defined as any individual or couple with income under $25,000 a year--can apply for assistance with rent.

Victoria Senior Citizens Housing Society executive director, Kaye Melliship, says that some of her income-assisted suites can rent for as low as $235. Her clients usually pay up to 30 percent of their income for rent. At the other end of the range, more well-heeled seniors can expect to spend up to $3,940 for rent and one meal at Somerset House on Dallas Road.

Independent Living is about independence. It can also just be about one less chore to do. Asked why he is in the Alexander Mackie Lodge in Langford, Sy Blair had a simple answer, "I got tired of cooking."

Owned by the Royal Canadian Legion's Prince Edward branch No. 91, the newly built Lodge is a four-storey building with 75 subsidized suites. The facility is staffed 24 hours a day, and provides weekly housekeeping, in-house social activities and two meals a day.

The 90-year-old Blair has been a widower since 1982. Although he gives high praise to the “lovely” staff at the lodge, he reiterates, "I just got tired of cooking and washing up the dishes."

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Housing Resources:

-Senior Living Magazine publishes an annual housing guide, Right, for seniors that covers what's available on Vancouver Island.

-The Senior Services Directory, published by Seniors Serving Seniors, lists services available to seniors from activity centres to veterans' services, and includes a section on housing options.

ASSISTIVE DEVICES IN SIGHT FOR BRITISH COLUMBIANSBy: Linda Bartram

Editor’s Note: Linda Bartram is President of AEBC’s Victoria, British Columbia, Chapter. The following article is adapted from “A Participation Model for a Personal Supports Program for People with Disabilities in British Columbia”, prepared by Karen Martin and Christine Gordon, May 2006, for the Provincial Equipment and Assistive Devices Committee.

British Columbia currently has no universal equipment and assistive devices program for people with disabilities. British Columbians who need access to these vital personal supports must try and find their way through a myriad of programs with different eligibility criteria, whether this is through a variety of provincial ministries or through service organizations. If a person with a disability does not fall into a particular population or category of disability served by these programs, then they fall through the cracks. Accordingly, Statistics Canada reports that people with disabilities in British Columbia have the highest level of unmet need in Canada for equipment and assistive devices (Statistics Canada, A Profile of Disability in Canada, 2001; 2001 Participation and Activity Limitation Survey, Catalogue No. 89-577-XIE, December 2001).

The Provincial Equipment and Assistive Devices Committee (PEADC) is a coalition of more than 35 community organizations that has been working together since 2004 to try to change this situation. In a Briefing Note to government entitled Equipment and Assistive Devices for British Columbians with Disabilities, PEADC argued that the provision of equipment and assistive devices needed to be better coordinated and better funded, and urged government to enter into a partnership with the community in order to achieve this goal.

In October 2005, Claude Richmond, Minister of Employment and Income Assistance, recognized the importance and urgency of the need and took the leadership to initiate the Personal Supports Working Group, which brings representatives from PEADC together with representatives from five government ministries (Health, Education, Advanced Education, Children and Family Development, Employment and Income Assistance), and one crown agency (Community Living BC). The goal of the Working Group is to develop a provincial plan for the provision of personal supports with equipment and assistive devices (EAD) as the starting point. Personal supports are an integral part of the government’s disability strategy, which is aimed at achieving the third of its great goals--the best system of support in Canada for people with disabilities, seniors, those with special needs and children at risk.

One of the first tasks of the Working Group was to forge a vision and shared values base for personal supports. The vision, values and principles that have been developed reflect the aspirations of people with disabilities and the ideals of both the community and government. PEADC has developed a Participation Model for the delivery of personal supports that borrows some of the most promising practices from other parts of the world, and creates some brand new

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ones based upon the direction in which our vision, values and principles led us. Here are some of the key features of the proposed Participation Model:

The model is a description of a dynamic process with the person with the disability as the driving force. The desired outcome is participation, to whatever degree the individual desires.

The model describes a process that begins with the individual. Each individual has goals and a plan for achieving those goals. A goal can be as straightforward as wanting to go shopping once a week, or as complicated as travelling the world in order to participate in educational or sporting events.

An individual plan becomes the doorway into assessment. The assessment focuses on what functional supports are needed to achieve the goal. It is guided by the user, in partnership with family and EAD practitioners, and it considers the social and physical environment within which equipment and assistive devices will be used.

Personal Supports Centres are a mainstay of the process. They are places both virtual and real that provide information, peer support, assistance with making plans, training, exhibits and access to EAD practitioners. These centres build on community capacity by co-locating with existing services and community centres, and by coordinating all personal supports service provision under one unifying delivery philosophy and framework.

The model envisions that each of the functional areas has a series of credits attached to it that translate into purchasing power for equipment, assistive devices, delivery, installation or fitting, training, maintenance and repairs. The number of credits that are given to individuals will depend upon their plan and the assessment of their functional needs.

Although the Personal Supports Centres provide many physical and virtual doorways to enable users, wherever they live, to make plans and get assistance with assessing functional needs, they are unified by the same philosophy and policy framework. However, there is only one doorway to funding. Financing the credits will happen outside of the view of the user through coordination of all of the existing funding sources. Users who have no other available payer are funded through a new stream of expenditure that is dedicated for the purpose of equipment and devices. The model envisions an eventual integration of all of these funding sources.

Once credits have been assigned, individuals are free to use their credits in the marketplace with dealers and distributors who are prepared to abide by a set of standards. The marketplace is constrained as little as possible so that users can meet their unique needs and the market itself can be free to innovate. Credits can be banked for an extended period of time. This enables users to manage their credits in order to take advantage of technological change or to save credits. For example, the purchase of recycled equipment may lead to credit savings, which could then be applied to other equipment needs.

Education, training and peer support are as important as the equipment and devices themselves, and every user is guaranteed access to these resources through the Personal Supports Centres.

The process is dynamic with feedback loops that enable people to re-enter the planning process when needed. For example, follow-up and evaluation with EAD users may indicate modifications to equipment and devices are needed, as well as further training. For some individuals, as they achieve their goals and participate more fully in the community, their goals

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will change and Individualized Plans will need to be revised, while for others changes in their disability may necessitate changes in the individual plan and the EAD.

The Participation Model for Personal Supports transforms service delivery by anchoring every component of the process to individual goals, and by freeing the users to access the marketplace and make decisions about how best to meet their functional needs. It is focused on choice, including the choice that some users may make to let an EAD professional, like an occupational therapist or a speech pathologist, make their equipment and devices decisions on their behalf.

For more information about PEADC or for a copy of the full report, contact Linda Bartram, PEADC co-chair, at: [email protected]

NEWER VISION SOUGHT FOR VISUALLY IMPAIREDGovernment Needs to Start Supporting Visually Impaired, Advocates SayBy: Amy Dove

Editor's Note: The following article is reprinted from Saanich News, August 30, 2006.

Caption: Graeme McCreath, top, can print out material on a special braille printer, below. But, as an example of the challenges the blind face, McCreath notes that the device is 13-years-old, and if it ceases to work it will be almost impossible to replace.--Sharon Tiffin/Oak Bay News

Graeme McCreath gets up every morning and goes to work. He collects his patient list from the printer and goes about his day as a physiotherapist.

He does so without ever seeing a single patient. His printer raises each name and time into raised bumps, allowing him to read the day's tasks through braille.

His printer was purchased in 1993 for $5,000. It still works but he is certain that one day in the future it won't and McCreath can't afford a new one without assistance.

"My equipment is aging and there are no programs to assist anybody with equipment and there should be," he said.

McCreath lost his sight when he was 10 years old and he is sick of people treating the visually impaired as incompetent.

"The remnants of the Victorian age is the perception that the blind are always wanting and that other people must collect and care for us. We want to get rid of this image--it is not appropriate in the 21st century," McCreath said.

But that's never going to change under the current funding system, he added.

Charity collections are a Band-Aid on a real problem, McCreath continued. Social programs that provide funding directly to the individuals to purchase adaptive programs for work or to hire their own assistance is a better option than funnelling money through representative organizations.

"A charity-based philosophy for any group creates a negative image and where the blind are concerned, people think we are incapable and it's not right," McCreath said.

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Events, like the Sept. 1 Walter Gretzky golf tournament at Bear Mountain golf resort to raise money for the Canadian Institute (for) the Blind, may mean well but the fundraiser supports outdated views of blindness, McCreath said. Having celebrities collect money through an event that most visually impaired people cannot partake in reinforces the idea that blind people cannot sustain themselves. Fundraising should be done by the blind for the blind, McCreath said.

All proceeds from the tournament will go to the CNIB and a scholarship fund established by the Gretzky family. The money is then used to fund rehabilitation programs around the province. The CNIB is moving away from charity fundraisers but the need for money is a reality, said Bonnie Denford-Nelson, director of CNIB client services for B.C. and the Yukon.

"One way of making awareness happen is the fact that CNIB is holding this and, yes, it is not a direct correlation to vision loss, but it is a way of getting our name out," she said, adding that is when funding and education increases.

CNIB is the only rehabilitation-based organization in Canada for visual impairment and they receive little government funding, Denford-Nelson said. Fundraisers like the tournament give the non-profit organization a chance to appeal to the business community, she said. Making them aware of the cost of adaptive equipment--upwards of $2,000 for most software--teaches people about the employment barriers for the visually impaired.

Talking computers can run upwards of $25,000 and that doesn't cover additional scanners and printers to help people do their work.

Like any health issue that demands adaptive equipment for people to be active in the employment community, blindness should be covered by the government and not public fundraising, said Linda Bartram, Victoria chapter president for the Alliance for Equality of Blind (Canadians).

"That (charity) model just seems to have been taken for granted that that model would take care of people who are blind. The perception in the community is that they do, but because of lack of funds, that is not a reality," Bartram said.

Bartram was born with a degenerative eye disease which left her completely blind 15 years ago. She cautions that while the current system may not be ideal, it cannot be ripped apart without having something to replace it with.

That process is going to start by reevaluating the way we use basic language, she said. Using the word blind in a negative connotation reinforces stereotypes that blindness is a negative thing. "It puts such a negative spin on blindness," she said. Instead of focusing on the negatives of not having sight, people need to look at people's abilities more, she continued.

As the baby boomers age, things are going to continue to change, Bartram said. The existing perception of age and rehabilitation will change as more people demand treatment for things like loss of vision.

"Previous generations of older persons have not demanded that things be done for them. As baby boomers, we are and we will demand that things be done for us," she said.

There are currently more than 20 organizations and awareness groups, including the Alliance for Equ(al)ity, working to get federal funding for blind individuals.

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[email protected]

CONFESSIONS OF A SIGHTED CANE TRAVEL INSTRUCTOR

By: Caroline Rivera Coon

Editor’s Note: This article is reprinted from the Braille Monitor, July 2006: www.nfb.org

Over the thirteen years I have been a teacher of the blind with the New Mexico Commission for the Blind, I have learned much about blindness. At first I was guided by the coaching, instruction and correction of my blind supervisors. I also learned firsthand from other blind people.

I have held the hand of weeping seniors dealing with the double complications of getting old and becoming blind, heard the angry storms of consumers who had someone else to blame for their blindness, and chased blind youth who wanted to get to the donut shop before me.

I have learned that the personalities, comprehension levels and abilities of blind people are as varied as those of the sighted population, that blindness is truly just one characteristic of the many characteristics of an individual. In short, I have learned that, if there is one characteristic that will keep people from leading a successful life, it is not blindness but a pessimistic attitude about their blindness. This negative attitude is the liability, not the blindness.

Growing up with two blind sisters, Mildred and Eileen Rivera, our family always talked of them as amazing. It was not uncommon to hear a relative go on and on about my sisters doing as well as they did with so little sight. Today one is an attorney, the other a Wharton-trained marketing manager raising a family with a husband who is also blind. After attending a national conference on cutting-edge practices in training the blind, I called up my Federationist sisters and told them, “You aren’t amazing anymore. You are awesome sisters, but not amazing.” And they were glad to hear it. Today I know that to believe my successful blind sisters are amazing is to believe that blindness should have kept them from being successful. I now understand.

My sister, Eileen, first experienced the white canes in college. One Christmas she came home to Puerto Rico with her cane. She was getting around nicely with it and explained that it helped her move about more comfortably. My family accepted this because it seemed to work. My sisters no longer took someone’s hand to get from the car to the house or wherever we were going. I no longer felt responsible for their safety.

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Before I worked in the blindness field, my job was coordinating recreational activities for seniors at a nursing home in upstate New York. I called my blind sisters on several occasions and complained that if someone had shown some of the ladies how to use canes and read braille, they would be much better off.

When opportunity knocked, I came to work with the New Mexico Commission for the Blind, then under the direction of Dr. Fredric Schroeder. My sister, Eileen, assured me that it was “one of the most progressive in the country,” a belief I share to this day. Still I knew little about mobility and how it was successfully accomplished. In New Mexico I learned the alternative skills of blindness while blindfolded for a few months. Then I went out as a field teacher to blind adults and seniors.

My first mobility instructor, Doug Boone, taught me that when phoning new referrals, I was to ask them their height. By subtracting about four inches from this number, I could bring them a long white cane on my first visit to their homes.

At first I convinced my students to use the cane by explaining that drivers would know they were blind. Over time my philosophy and methods have progressed. Today I teach that the long white cane in the hands of experienced blind persons promotes independent travel and helps avoid hazards--that listening, focusing on one's surroundings, and knowing how to cross intersections keep one safe.

In addition to my usual work with adults, I work with teens during our Students in Transition to Employment Program (STEP). Most blind adults I work with are cooperative and unquestioning. In working with partially blind teens, I have learned that students need to be convinced of the value of learning and properly applying the most reliable alternative mobility techniques. The teens who had learned other ways of doing things want to know why these techniques are best. From them I learned the importance of explaining the techniques of structured-discovery cane travel. I have been busily learning new ways to illustrate these principles and incorporate them along various travel routes.

With both teens and adults I have learned that I need to keep my expectations high for my students. This is a continuing process because I sometimes realize I did not believe my students could do what they just did. When I recognize these thoughts as a hindrance to progress, I begin to weed them out. Although I would like to think that I have weeded out all my subconscious low expectations, it is probably not true. This kind of thinking is too prevalent in our society not to affect me. That is why I enjoy attending the National Federation of the Blind conventions with my sisters. I think of it as my annual tune-up.

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I wholeheartedly concur with the writings of Dr. Jacobus tenBroek, founder of the National Federation of the Blind. This wise leader said, “Given proper training and opportunity, the average blind person is able to perform in the average job in the average way.”

How do we provide proper training at the New Mexico Commission for the Blind? To begin, we apply the structured-discovery method. As Jeffrey Altman and Joseph Cutter wrote, "Structured Discovery is more than a collection of instructional methods and strategies. It is a philosophical view of blindness--a view which regards the major barrier to independence to be misconceptions about blindness manifested through low expectations and internalized by the individual."

We assess blind clients' strengths and weaknesses and develop plans to address these areas. The plans include instruction in the alternative skills of blindness, such as braille and cane travel. In addition, students and teachers collaborate with blind role models during training, which is carried out for the most part or entirely under sleepshades and using a long white cane.

To succeed, this rehabilitation must include confidence-building exercises, as well as seminars that deal with society's attitudes: exercises that enable blind individuals to apply their knowledge and skills in a society that often doesn’t believe that blind people can do much with their lives. Proper training enables a blind person to live a quality life and compete alongside the sighted population in the world--in other words, to pursue happiness along with everybody else.

I firmly believe that what our graduates are doing should be comparable to what their sighted peers are doing. Once our graduates complete their adjustment-to-blindness training with long white canes in their hands and new-found independence in their hearts, they have no trouble confidently advocating for themselves and following their dreams.

FROM CANE TO CANINEBy: Lynn Chu

Editor's Note: Lynn Chu lives in Victoria, British Columbia.

I received my first guide dog one year ago, and I am so glad. I had used a white cane since age 15 when I started losing my sight. I'm now 39 and am enjoying the benefits and responsibilities of having a guide dog, though there are additional considerations to keep in mind.

When I use a cane, I need to know which cane techniques to employ in which situations. I have to know when it is safe to cross busy roads or get a sighted person to help. I have to know where I am going and how to get there, such as which bus to take to a particular restaurant. When using a guide dog, I still need to make these kinds of decisions.

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But a guide dog is a living being with needs. When my dog does something good, it is necessary to praise her. We wake up at six o'clock in the morning and go to bed at ten in the evening. I feed her twice a day and relieve her five times daily. Having a guide dog is much like having a baby--a lot of work but rewarding.

A white cane is not the same company as a guide dog, and it doesn't always give you the same type of information. If there are individuals coming towards me or following behind, for example, my dog lets me know by barking or getting me to move to the side. Although I had to learn how to get around Victoria on my own before I could get a guide dog and there is more I have to do when using a dog than with a cane, I wanted to get a guide dog because I would feel more independent, and also more secure when alone.

THE BEST CHOICE I COULD HAVE MADE There are varying opinions on the role that schools for the blind play in increasing independence. Although I cannot speak to the situation today, I can certainly say that my decision to attend such a school in the early to mid 90s was one of the best that my parents and I have ever made. I started losing my vision when I was six. I attended elementary and junior high school in the integrated school system for these early years. In order to help me deal with my vision loss, itinerant teachers were provided and they taught me braille and computer skills. This intervention at an early age assisted me with the integration into a mainstream classroom. It wasn’t until the age of 14 that I started attending a provincial school for the blind, and I can say without a doubt that this was the biggest factor in helping me to develop my independence. The five years that I spent at this school were the most influential years in my life as an independent person. I had the opportunity to learn all of the academics required for post-secondary education but more importantly, I learned the everyday things that one needs to succeed in life. I was taught how to go grocery shopping, how to prepare a meal, how to do various household chores and how to get around my environment with orientation and mobility lessons. Furthermore, this school provided opportunities to blind, deaf-blind and partially sighted students that, at the time, would never be experienced in a regular school system. All sports were adapted and the students were encouraged to take part. I was actually given the opportunity to be a normal teenager for those five years. Everyone needs to feel that they are part of a group. While I know I could have been part of a group in the regular school system, I still always felt that I was different in some way. For those five years, I was a teenager, as opposed to a blind teenager. The teachers and the residence counsellors encouraged independence but were also there to provide support when needed. In my final year of high school, I had the opportunity to move into my own apartment off campus and pay the bills, prepare meals and do all other tasks associated with living independently. At the same time, I also was responsible for travelling back and forth to school each day. Because this was a school-run program, I had the residence counsellors there to support me if I ran into any problems. I feel that this program was perfect for me in preparing for the transition from high school to university.

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This school gave me the academics I required, the life skills I needed, and the experiences that every teenager, disabled or not, should have. All of these things in combination are why I am as independent today as I am. My time at this school prepared me for university, employment and life in general. And although I realize that these schools are not for everyone, I know that it was not only the right choice for me, but also the best choice I could have made.

SUCCESS IN EDUCATION: IS MAINSTREAMING ALWAYS THE ANSWER?By: Anthony Tibbs Editor’s Note: Anthony Tibbs is AEBC’s National Treasurer. He lives in Montreal, Quebec. What is the ultimate outcome we wish our education system to have on the students of tomorrow? In the primary/high school years, the desired outcome seems to be a little more broad, providing students with the basic foundations on which they can further develop their own minds, and to inspire self-confidence, independent thought, and the willingness (and capability) to pursue one’s own dreams and goals. I believe I was afforded these opportunities in the mainstream classroom, even with my vision impairment. I completed all of my basic education in this type of environment, as opposed to a specialized program (such as at the W. Ross Macdonald School), and for 11 of those 13 years I was a large-print user, requiring very little hands-on intervention support or assistance. As long as I was provided with the basic necessities--large print textbooks, in particular--I was able to perform well above average in almost all areas of the curriculum. Socially, being a part of the mainstream program was very beneficial, as it forced me to learn to adapt to an otherwise sight-dependant world, to learn to quietly and unobtrusively cope with the challenges that arise as a result of my vision--an incredibly valuable skill when one is entering post-secondary education, or the workforce. While being in the public education system may have prepared me well in some ways for the “real world”, the experience was not perfect. For the first six years of my schooling, I had no idea that “large print textbooks” even existed, much less that I could have access to them. I was in regular contact with an itinerant teacher for the blind, but large print textbooks were never offered as an option until we discovered in grade six that I was, in fact, entitled to these books if I wanted them. But the feeling of the itinerant was that this would make me “lazy”. Perhaps there is some truth to that, and that challenging me to overcome my limitations had its merits; however, considering that I changed from a student who was barely passing each year in grade six to an honour roll student from grade seven onward, perhaps it was too much of a challenge? There are undoubtedly other students, like me, who ought to receive more support than they currently do, and the extremely limited resources available to itinerant teachers of the blind (who might have 20 or 30 students on their caseload) may be partially to blame. When my vision dropped off very unexpectedly in grade 12, it was necessary to immediately switch to alternative-format materials in order to complete high school (braille, electronic text, tactile graphics). The lack of pre-existing materials in the mainstream education system was definitely a problem, and made completing high school more difficult than it might have otherwise been. I am not sure that, if I had always required that level of support and accommodation, I would

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have found the mainstream education system satisfactory: It can be done, but this route is definitely not for the faint of heart. Finally, while the mainstream classroom may have afforded many interesting “standard” social opportunities, I cannot help but feel that I would have benefited from knowing more students with blindness or low vision. Through the course of my schooling, I had met a few other blind and partially sighted students at different events, but interacting with a person once every couple of years and spending several months at school with them are two different things. It may have helped me to see that there are others in my situation (as I realized in grade seven), and to see all of the options available to students in terms of material access, yet this was never even discussed as a possibility, much less an option. In sum, I found my experience in the mainstream public education system to be generally very positive, and the end result has certainly not been a disappointment. On the other hand, I was, for the first six years of my schooling, one of those students left a little behind because I simply did not know that there was a better way (e.g., large print textbooks). Socially, there may have been some value to exposing me to more students (and/or adults) with vision impairments, simply to demonstrate that I was not alone in my fight for equality. But, at the end of the day, I am not at all disappointed at where I am now, where I am going, and how I arrived here: For me, the mainstream classroom experience was “successful". PROPONENTS SAY THE DECLINE IN BRAILLE INSTRUCTION IS LEADING TO ILLITERACYBy: John Faherty

Editor's Note: The following article is reprinted from the Arizona Republic, June 1, 2006.

Can't read this? Neither can nearly 90% of blind schoolkids, and proponents say the decline in braille instruction is leading to illiteracy.

Arielle Silverman has always loved to read. From Little Women in fourth grade to Jane Eyre in high school, books were a constant companion. She could slide her fingers across the page and feel the world. Those words, however, have done more than make her well read. They have secured her place in society.

Silverman, blind since birth, has now finished her junior year at Arizona State University with a double major, in biology and psychology, and a grade-point average of 3.9.

The Scottsdale native is ambitious, thoughtful and well-spoken. And the 21-year-old is convinced she couldn't have achieved this without her fluency in braille.

A generation ago, 50 percent of blind schoolchildren used braille, according to William M. Raeder, president of the National Braille Press in Boston. Now, he said, it's less than 12 percent.

Young blind students today are still instructed in braille, but in the past few decades more students have been mainstreamed and no longer receive daily instruction.

That is significant, because reading and writing braille is a skill that needs maintenance. The less often a student uses it, the more likely it is those skills will diminish or even disappear.

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The reduction in braille literacy has been mollified by the fact that there are now more ways than ever for the blind to acquire information. Much of the world is moving away from words on a page and toward electronic/digital information. The proliferation of books on tape means blind people no longer have to wait to "read" the latest bestseller. Talking computers have brought the blind to the world and the world to the blind.

These advances have placed a generation of blind young adults and children in an information paradox: They have more knowledge at their disposal, while their ability to read and write declines.

But proponents of braille always fall back on the same argument: If reading and writing are important to the sighted, they are important to the blind.

"If the literacy rate for sighted people was 10 percent, that would be a huge issue," Silverman said. "I think kids aren't being taught braille, and they aren't being given enough time to practice."

Congenital Disease: Silverman is sightless because of Leber Congenital Amaurosis, an inherited retinal degenerative disease. But her parents never considered not teaching her to read and write.

"I grew up thinking reading is one of the greatest joys of life," said Sharona Silverman, Arielle's mother. "Having a book in your lap is an incredible gift, and I was going to introduce that gift to both of my children."

Arielle's sister is sighted.

"Arielle had such a love of the written word early on. So she just flew with (braille)," her mother said.

Because of her parents' commitment to literacy, Arielle Silverman was sent as a child to the Foundation for Blind Children in Phoenix to learn braille. She could read by age 5. Silverman then was mainstreamed into the Scottsdale schools and graduated from Chaparral High. She is now president of the Arizona Association of Blind Students.

In that role, Silverman has pushed for better education for the blind, particularly an increased emphasis on braille instruction.

"Braille does not mean more than a sighted person's ability to read and write," Silverman said. "It's exactly the same. It's just the way we read what we read."

Law Debated: Arizona law starts with the presumption that blind students should learn braille. But that law is not seen as necessarily valid by the person in charge of implementing it.

"Just because there is a presumption does not mean it is not an archaic presumption," said Joanne Phillips, deputy associate superintendent for exceptional student services with the state Department of Education.

Arizona Revised Statutes Section 15-214, regarding the teaching of the blind, states that "proficiency in braille is essential for that student to achieve satisfactory educational progress." The law is based on the fact that braille still is the only way blind people can read and write. But it stops short of mandating braille instruction.

"There is no statutory mandate where every child who is blind must learn braille," Phillips said.

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You can argue that it does not matter how you read War and Peace, as long as you know the story and the genius of Leo Tolstoy.

"There is no correlation between braille literacy and educational achievement," Phillips said.

Karen Wolfe of the American Foundation for the Blind strongly disagrees. "You can't be literate just listening," she said. "Literacy helps us think and communicate our thoughts. You will never be truly literate without braille."

The AFB says the employment rate for the blind in this country is 32 percent. And Blindinc.org says that 93 percent of the employed blind read and write braille.

Still, the rate of braille literacy is dropping across the country. The reasons for the national decline are many, but the primary reasons are:

* Mainstreaming of blind students.

* Increased technology, such as talking computers and electronic books.

* More books on tape.

* Increased number of blind children born with additional physical or mental handicaps, often the result of premature birth.

The state of Arizona requires that the Department of Education evaluate each blind student to determine whether he or she can learn braille, but it does not require the retention of those records. So no one knows how many students in Arizona are learning braille.

Rehabilitation Act: The beginning of the decline of braille literacy can be traced to a 1973 federal decision called the Rehabilitation Act--Nondiscrimination Under Federal Grants and Programs. It mandated that public schools make accommodations for children with disabilities.

For many blind students, it meant the ability to come home. Prior to 1973, students who wanted an education had to travel to a school for the blind. In Arizona, the school was in Tucson. The education was first rate, but it was segregation for blind students.

The new law allowed children to return to their communities, to sit every day with their peers in schools that were mandated to accommodate them. But one significant flaw was with braille instruction.

Braille teachers suddenly had to travel from school to school or district to district to introduce braille to blind students one or two at a time. It was far more practical for districts with a few blind students to get by putting textbooks on tape and allowing test-reading aids for blind students.

The prevalence of books on tape meant they no longer had to wait for braille publications to read the latest bestseller. All blind people, not just braille readers, could take part in a cultural phenomenon like Harry Potter.

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Eventually, computers with voice capabilities came on the market. Braille began to be seen as a luxury more than a necessity. Knowledge was available without braille. Literature was available without braille.

The irony is that, as braille literacy dropped, new printing technology made braille much more accessible.

High-Tech Aids: Silverman lives in an apartment on the ASU campus. Her course load includes such classes as organic chemistry with Professor Seth Rose, in which he says things like "Heterocyclic aromatic amines are weaker bases than heterocyclic aliphatic amines."

When she gets to class, she sits with a BrailleNote laptop that allows her to take notes and review them later. From a distance, the BrailleNote looks exactly like the standard laptop computer used by her peers, but instead of the 26 letters of the alphabet, six keys represent the six-dot system of braille. Each letter of the alphabet is represented by a combination of the six dots.

Silverman points to this machine and others like it as an example of braille working hand in hand with technology.

"They are not mutually exclusive," Silverman said. "If I didn't know braille, I couldn't use my computers to the level I need them."

But the teaching of organic chemistry is very visual. Formulas and models are used, and Silverman can see none of them.

Rose helps "translate" some of his teaching material into a digital format that will have meaning to Silverman. If a class focuses on a particular compound, he will build a model that she can "see" with her hands. He expresses colours with different textures.

He is glad to do it, he said.

"It gives me a great feeling to know that when I hand a model to a student, that she can 'see' exactly what I've been talking about," he said.

Literacy Vital: With her intelligence and work ethic, could Silverman have made it this far without the ability to read and write?

"I doubt it," she said. "Would a sighted person be well-educated if they are illiterate?"

Silverman reads, writes and takes rapid-fire notes in braille.

"I have a feeling the way our brains are designed, learning how to read opens up parts of your brain," she said.

She adds that math and science notations are possible only for people fluent in braille. They could not be replicated by books on tape or by talking computers.

Silverman will occasionally listen to a book on tape, but only if she is travelling or if the book is not readily available in braille. In high school, she read Seventeen magazine in braille, but now she is more likely to read a medical journal.

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The American Foundation for the Blind celebrates independence and learning. It is the organization to which Helen Keller dedicated her life. So it is not a surprise how much it advocates the teaching and learning of braille.

The foundation says literacy is vital to a successful education, career and quality of life in today's world. Whether in the form of curling up with a good book, jotting down a phone number, making a shopping list or writing a report, being literate means participating effectively at home and in society.

"If our value system expects sighted people to be literate," Silverman said, "we need to expect blind people to be literate."

Reach the reporter at [email protected] or 602-444-4803.

STAYING THE COURSEThe Full-Time Job of Keeping a Full-Time JobBy: Kimberly Morrow

Editor's Note: The following article is reprinted from Dialogue Magazine, March-April 2006, courtesy of Blindskills Inc.

As an adult who is blind or visually impaired, you believe you have just come through one of the most harrowing experiences you will ever have. At the very least, you acquired an undergraduate degree, and perhaps you have even acquired a post-graduate education. You have gone through a gruelling interview process, during which you may have been asked every type of question from the highly appropriate queries about credentials to the heavily disguised questions regarding your ability to locate the restroom facilities and where you will relieve your dog guide. At long last, you have found an employer who is willing to provide you the opportunity to earn a respectable living. You have achieved the goal of securing full-time employment. You can finally rest easy and stop worrying, right? Not quite. In the case of any new hire, but especially in the case of a person who is blind or visually impaired, keeping a job takes just as much work and savvy as getting the job--and sometimes, even more. What follows are suggestions for sailing your boat in the mainstream and through potentially rough waters.

Maneuvring Around the Workplace--Before your first day, visit your new job site to get a feel for the places you'll need to navigate frequently. If possible, work through the routes on a weekend day or a day when the offices are closed, so that your co-workers will only see the confident, capable you, who is familiar with your surroundings. If you have a dog guide, talk with maintenance about the best location for relieving your dog. If you have any concerns at all about your ability to clean up after your dog, plan to tip a designated maintenance worker to assist if necessary.

Getting to Work on Time--Your employer is not responsible for ensuring that you or your sighted colleagues have adequate transportation to get to work on time. If at all possible, live near a bus line so you can travel to and from work independently. If this is not feasible, the paratransit system might be an option; however, don't count on it. Due to staff shortages and route changes, paratransit cannot always transport you to your desired location by, for example, 8 a.m. sharp. Carpooling is an ideal solution. If possible, locate a colleague who lives relatively near you and ask if she would enjoy carpooling. Let her know that you will pay for the cost of fuel if she will provide

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the ride. If you cannot locate a carpool, seek out a retiree or college student who may enjoy earning extra money in exchange for transportation.

Prepare for the Power Lunch--If you're going to eat in the office cafeteria frequently, talk to the manager of the kitchen staff. Let the manager know how best to help you, so that you can appear as independent as possible. Remember that a professional appearance at all times is critical. To this end, do not be too proud to ask for assistance through the line. An even better solution is to call ahead, place your order, and let the staff know when you'll arrive. Depending on the staff, your plate may have already been prepared when you arrive. If possible, ask for your food to be placed in "to go" boxes, even if you plan to eat in-house. This way, you only have one spot to locate after you finish your lunch--the trash can.

Accommodations--Be prepared to pay for your own accommodations, unless the company offers to foot the bill. Keep in mind that they could have easily hired a sighted person who would not require costly adaptive computer equipment or readers. What you do have a right to expect is assistance in locating qualified readers if you are unable to do so yourself.

All Systems Go--Know what programs you will need installed on your workplace computer before you arrive. Depending on the size of your company, either have your information services department install the software, including JAWS, Duxbury or other adaptive software, prior to your arrival, or hire the installation done on your own. Do whatever it takes to be prepared to type that first document on your first day of work.

Street Smarts on the Job--During the first weeks on the job, do far more listening than talking. Make sure you become familiar with the chain of command: Whom do you go to for approval of various projects? Whom do you speak with first if you have concerns about any aspect of your position or the work environment? Having a coherent picture of the rungs up the proverbial ladder will save you a great deal of time and potential hardship.

Making Friends--It is important to get and remain on the good side of your colleagues and to prove your capabilities. Never initiate discussions about your disability. If the subject comes up, politely answer your colleagues' questions, and then quickly move on to another topic of conversation. Remember that you have more in common with those living in the sighted world than you have differences. Invite colleagues out to lunch. If a colleague is ill, drop him/her a get-well card. And always remember to say "thank you." On holidays, remember the secretary who reads you that unexpected piece of impossible-to-scan mail or the security guard who always makes sure you're not waiting at the bus stop by yourself at the end of the day.

How to Handle Inappropriate Remarks--If you believe an inappropriate remark has been made about your disability, several steps should be taken prior to filing any type of formal complaint. First, be sure that the remark actually is inappropriate. If you believe an inappropriate comment has been made, talk with your immediate supervisor about the issue. If your supervisor is part of the problem, let your supervisor know that if the problem persists, you will need to approach his/her superior. If the issue does not improve, act upon your word. If the problem cannot be resolved internally, inform all parties concerned that you plan to file a complaint with Human Resources. When you approach Human Resources, find out if you can file an informal complaint before filing a formal one. This allows for mediation before the issue takes on job-threatening proportions.

Let your colleagues see you as a positive, upbeat, motivated professional who is willing to go the extra mile to get the job done. When the occasion arises for another blind job candidate to be

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interviewed, your employer will have you to thank for the attitude he/she has about the capabilities of people who are blind.

Dialogue is a publication of Blindskills, Inc.: P.O. Box 5181, Salem, OR 97304-0181; phone: 800-860-4224; email: [email protected] and website: www.blindskills.com

BLIND LEADING THE SIGHTEDYellow Cab of Austin Has Become an Employment Option for People who are Visually ImpairedBy: R.U. Steinberg Editor’s Note: The following article is reprinted with permission from the Austin Chronicle, June 9, 2006. Ever wonder what it's really like at a taxicab company? If you're old enough to remember the TV series Taxi, you can probably imagine Louie De Palma in his cage, barking out orders to Reiger, Nardo, and the others. If you never watched Taxi, it's just as well because that kind of cab company is history. Over at Yellow Cab of Austin, they use computers with mapping and geo-positioning software to track customers and drivers. The garage is immaculate, with seven bays, and they have their own body repair shop. The only one barking--well, he barks once in a while--is King, the seeing eye dog. No surprise, since five of the current 25 or so call-centre staff members are visually impaired. Louie would be positively livid. But not Tomas Smith who, as communications manager at Yellow Cab, manages the call centre and computer equipment. "One of our guiding principles is that we be an active participant in the community," says Smith, who has been in the cab business since 1978 (the year Taxi premiered on TV). A little over a year ago, Smith received an unannounced visit from Denime Sadler, who has been completely blind since age 7. "I had no idea he was coming. I didn't have any want ads in the paper. But he decided that I needed to hire a blind man to answer telephones," Smith said. He convinced me he could get help from the Department of Assistive and Rehabilitative Services. ... My intuition was he could handle the stress and excel. So I hired him." Sadler, who prefers to say he is a person who doesn't have "physical sight", moved to Austin in 2004 from Mississippi where he had been attending college. "I had a friend here already, but it was a rocky start. My first service animal and I were in an accident with a tow truck. Although we both survived, the dog had to retire. But from tragedy came triumph: I got help from the state and a job here." Sadler says he got the idea for working at the cab company because Capitol Metro contracts with Yellow Cab to provide transportation for people with disabilities. "I kept asking the cab drivers if there were any openings here, and one day they suggested I check it out myself." Sadler said he recently helped form a coalition to help increase public awareness about issues for people without physical sight. "The blind need to be taught they can be independent and businesses need to be shown we can work just as well--if not better--than 'normal people.' Our unemployment rate is 70 to 80%, which is a disaster." How hard is it to integrate people with disabilities into the workforce? Employers may complain about all the difficulties associated with the Americans with Disabilities Act, but a recent study by Cornell University says one of the obstacles to hiring people with disabilities is the negative

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attitude of supervisors and co-workers. Smith says he's spoken with people in state government, as well as with area-employment specialists, about what Yellow Cab has done. "The toughest thing is to come to the realization that there really isn't a difference between a sighted and unsighted person. We all have our shortcomings, abilities and disabilities. Once you can shed the prejudice, you'll find a body of very willing, able and motivated workers." Smith said Yellow Cab had to make sure door handles had levers. The company also had to mark the bathroom doors with braille, make sure nothing was protruding into hallways, and install screen-reading software called Job Access With Speech (JAWS) on call-centre computers. "Fortunately, we were already moving into a new building that was ADA compliant," Smith said. Chad Nezat, who has been visually impaired since birth, came to Yellow Cab in July 2005 after being laid off from his previous job. "Computer people at some companies don't like messing with JAWS or claim it has security issues. Then there are times when JAWS doesn't always work--that's been my experience with other customer-service jobs." Unlike many of his sighted co-workers, Nezat has been touch-typing since the fourth grade and was ready to work with Yellow Cab's computer system. "Most blind people learn how to type from an early age because we have to communicate in written form," he said. Everyone may not realize it, but all computer keyboards are "braille," Smith added. "If you look at the 'F' and 'J' keys, there are little raised areas--that's basically all they need to get oriented." Hugo Sanchez, who has only worked at Yellow Cab for a short time, also brings a skill some of his sighted co-workers don't have: He is bilingual. "Speaking Spanish is not only a good asset for me, I also think it will help generate revenue for the company, because we can provide something for a segment of the population that might not get served otherwise." Sanchez, who at age 44 is the most senior of the visually impaired staff members, says there are more opportunities for younger people with visual impairment today than there used to be. When he is not working, he is a proud father of four (his oldest is in the Marines), a ham-radio operator, and plays on the Austin Blackhawks, a world championship-winning baseball team for people with visual impairments. (For more information, visit the National Beep Baseball Association at www.nbba.org.) Although other businesses have been blind to Yellow Cab's success thus far, Smith is happy to report that the Yellow Cab franchises in San Antonio and Houston are also working toward hiring people who are visually impaired. "When we went into this, it was a learning curve. None of us had ever done it, but I got help from Ed Browning at DARS. Our San Antonio branch is currently moving forward with implementing the hiring of blind call-takers, and Houston is not far behind. And there's been an added bonus. We had to make a pretty big technical jump from old, dumb monochrome terminals to modern PCs so we could install the JAWS software. We liked the PCs so much better that we moved all of our software to them. Now, all of our call-takers have access to the new map software. This has helped the entire company." DETERMINATION CRYSTAL CLEARDrive to Help People Pushes Calgary Caregiver to Triumph Over Own DisabilityBy: Todd Saelhof

Editor’s Note: The following article is reprinted from the Calgary Sun, October 1, 2006.

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When Shirley Chandler first considered nursing, she had all the qualities--passion, personality and perseverance--to make her one of the country's top caregivers.

Twenty years later, the Calgary nurse is still viewed among the best in her field, with her love for helping others remaining her spark, even though she's developed a degenerative visual condition.

Chandler, who's almost legally blind in both eyes, refuses to let the early onset of macular degeneration to her central vision come between her and the love of healing fellow Calgarians.

"I try not to let this slow me down--some people would let it get to them and stop them cold, but I won't let it," said Chandler, a 43-year-old native of Vanderhoof, B.C., who can't drive, can't read without adaptive devices and has trouble watching TV and recognizing signs and faces.

"For the most part, you learn to cope with it."

Her diligence and zealousness make her the Calgary Sun's and Calgary Health Region's Nurse of the Month for August.

Add to that confidence and a sparkling joie de vivre, and as a nurse with Telehealth--the program using technology such as phones, computers and televisions to deliver health services over distance--Chandler is a key cog in the CHR's commitment to health and welfare.

She coordinates vital telehealth projects such as chronic disease management and discharge planning, which makes seamless the transition of patients from a city hospital to a rural setting.

The CHR's goal is to increase access to specialists for rural clients and patients in other health regions.

And the registered nurse commits to her coordination unconditionally, said colleagues Linda Wright and Kaly Shoker.

"Shirley always has a smile and is generous of her time and energies to her friends, co-workers and clients," Wright said.

"She is a joy to work with," Shoker added.

She excelled at being a nurse, with experience in medical surgery, in the intensive care unit and in the emergency room. Her time in the field even included three years working in Hawaii before the vision problems hit.

"I was very emotional," said Chandler of a condition that forced her to make serious career decisions in 2001.

"The thought of not being able to continue being a nurse was almost as distressing to me as the actual loss of vision.

"And because bit by bit by bit I was losing my vision and didn't know when it was going to level off, it was a very stressful time."

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With the help of her strong faith, support from friends and family and her own positive outlook, she made the best of a difficult situation, which eventually led to a position as a triage nurse with the grassroots HealthLink program, the CHR's dial-up medical information service.

"Working at HealthLink using adaptive software with the computers was a real cool way to continue with nursing and using the exact same skills and training that I had," said Chandler, who trained at Lethbridge Community College and then graduated with a bachelor of nursing degree from the B.C. Institute of Technology.

"It turned out to be a fabulous career move for me, and it's not something you can do just as a novice.

"That's the beauty of nursing--there's just so many avenues in the career path that still use the critical thinking, the analyzing, the assessment, the monitoring and the art and science of nursing."

Her attitude also opened up doors for other innovative jobs, including the one she works at now with Telehealth.

The CHR has helped her in every way with the posting, outfitting Chandler's workspace with a 21-inch monitor, adaptive software, a screen reader and a magnifying device that enlarges the print on her computer.

And Chandler sees herself as more than simply a caregiver and a coordinator. She’s making certain of that by sitting on the council for the College and Association of the Registered Nurses of Alberta and working her way to a master's degree by taking courses through the University of Athabasca.

"Nursing is more than just tasks--it's the whole picture," Chandler said. "It's seeing the patient not in the diseased condition but in the spiritual and psycho-social, and in the context of their own lives.

"Helping people in crisis make better choices was always something that appealed to me."

FINDING A HOME WITH LOVEAdult Foster Care the Right Fit for Daughter with Special NeedsBy: Amy Smith

Editor's Note: This article is reprinted from the Chronicle-Herald, December 17, 2004.

Nine years ago, Lorraine Bartlett was a widowed mother struggling to care for her severely mentally and physically disabled daughter of 22.

She was near the end of her rope, unable to provide the needed care for Tracy, who has a rare disease that left her blind and mentally challenged, with a cleft palate and webbed fingers.

"I just couldn't do it," she said.

Tracy spent time in a group home, then a special options home, but neither offered the right fit.

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"What I was looking for was somebody who would love her the way I love her, and that's what I have," she said.

Tracy went to live with Patricia and Lloyd Mansfield under the Alternative Family Support program, a foster care program for disabled adults.

Mrs. Mansfield said Tracy has blossomed in their Dartmouth home.

"It's the greatest joy in the world," she said.

Community Services Minister David Morse said Thursday the province wants to expand that program beyond the 120 homes in metro and the Annapolis Valley, starting in late 2005.

"This can offer a long-term family situation," Mr. Morse said at a news conference in Halifax.

But New Democrat MLA Maureen MacDonald, a social worker, said the province's emphasis on foster homes for adults is a fundamental shift in thinking.

"For years we've talked about treating those people respectfully as adults who happen to have a disability," she said. "How many adults do you know who want to go live in a foster home in foster care?"

Ms. MacDonald said she understands some want this as an option but expressed concern about who decides whether a disabled person goes into foster care or lives independently.

Mr. Morse also announced the province plans to have more supported apartments across Nova Scotia for those who require minimal support and supervision. People in these types of homes require various levels of help, ranging between two to three hours a day and two to three hours a week.

"This is one of the least intrusive options of support," the minister said. "Maximum independence is encouraged through this program. They work and live on their own."

He said right now some people are getting 24-hour care when it really isn't necessary.

"It's a shame to provide them with all these extra resources when they just need someone to look in on them," Mr. Morse said.

As well, a new program called Direct Family Support, starting early next year, will help individuals to remain at home and under the support of Community Services, rather than falling under the Health Department's auspices once they turn 19.

These three programs come under Community Supports for Adults, which provides residential help to about 3,100 Nova Scotians. About $1 million that has already been budgeted will be spent, mostly for the Direct Family Program.

Lorna MacPherson, acting manager of the program, couldn't say how many people are in the wrong type of residential setting. But she said by adding and expanding programs, the province hopes to free up some bottlenecks in the system, getting more people the care they need.

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But Ms. MacDonald said she didn't hear anything about the people who are waiting to get into the system.

"It's frankly almost embarrassing what the minister announced here today and how little concrete information they could provide us," the Halifax Needha MLA said.

"The real crisis in Community Supports for Adults is the fact that there are people who aren't already in the program at any level and can't get in."

Liberal MLA, Manning MacDonald, said the Tories seem to have a strategy of making announcements with money that isn't new.

"The money was in the budget already," the Cape Breton South MLA said.

While he said any help for people with disabilities is a good thing, Mr. MacDonald questioned the province's motivation.

"When David Morse talks about program enhancements, you know an election is on the way."

Courtesy of The Halifax Herald Limited.

PARENTS WITH DISABLED CHILDREN NEED TO THINK AHEADBy: Meghan Cumby

Editor's Note: This article is reprinted from the Daily Gleaner (Fredericton), May 24, 2006.

Lorraine Silliphant never wants to leave her son, but she knows someday she and her husband won't have a choice. Her 38-year-old son has Down syndrome. While he can do a lot for himself, he needs to live with his parents. That's fine, Silliphant said, until she and her husband pass on.

"Where's he going to live? How's he going to be financially secure? How's he going to have the things that he's used to?" she said. "How can he continue to live the life he's living without us being here?"

The New Brunswick Association for Community Living (NBACL) wants to help parents such as Silliphant find the answers. It will offer a program to help them plan for the futures of their children with disabilities.

Krista Carr, NBACL executive director, said leaving money and estates to children with disabilities is different for parents who have children with disabilities who receive government funds.

"It's much more complex than it is for the average family," she said. "[The children] are only allowed to have a certain amount of money and it has to be protected in certain ways in order for it not to be taken back by government."

Carr said families don't know how to best leave money for their children so they can continue to receive government support. Professionals such as lawyers and financial planners don't know either, she said. The new program will inform families about financial planning, but it will focus on educating professionals on how to deal with parents who have children with disabilities.

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"We will be able to give families people they can turn to, who have the expertise to do what needs to be done," said Carr.

The families will still have to pay for the professionals' service. As for low income families who don't have a lot to leave to their children to begin with, Carr said the program can still help them plan for where their child will live, and help them find the funding for it.

Silliphant said this will help relieve the anxiety she feels when thinking about her son's future without her.

"It gets scarier as you get older," she said.

[email protected]

EARLY CHILDCARE TECHNIQUES OF ONE BLIND MOTHERBy: Kathy Nessner-Filion

Editor's Note: Kathy Nessner-Filion works for Statistics Canada and lives in Aylmer, Quebec.

If there are any books written for blind parents, by blind parents, I am not aware of them. The purpose of this article, therefore, is to share some of my experiences of how I, as one of many blind parents across this country, figured out some practical techniques for raising young children.

Our first child, Philip, was born in 1984 and our second, Alena, in 1987. Since my husband and I had very little experience in caring for babies, we made as many preparations as we could during my first pregnancy. Together, we attended Pre-Natal classes and read as much material as we could. We bought a couple of sleepers and a package of disposable diapers for newborns and, using an old doll of mine as a model, we practiced putting the diaper on the doll and dressing it in one of the sleepers. This proved to be a really useful exercise for me.

Not all the practice or reading in the world, however, could prepare me for the overwhelming joy, wonder and love I felt when I held my children for the first time. Probably like all new mothers, I examined their little faces, their fragile little arms and legs, and their tiny fingers and toes. The only difference between myself and most new mothers, I suppose, was that I did this all by touch. Furthermore, once I brought my babies home, I had to figure out some alternative techniques for caring for them.

Both of our children shared our room until they were a little over a year old, as I felt more secure knowing my babies were as close to me as possible while we all slept. When they were a year or so, the crib and change table were moved into another bedroom because of my problem getting a decent night's sleep. I soon learned that, if I could maintain a state of semi-consciousness while I changed and nursed them during the night, sleep often returned quite easily. During more serious bouts of insomnia, I find that my orientation and mobility, as well as my ability to concentrate, are severely impaired, which is serious enough for myself as a totally blind person, but more worrisome when there are tiny babies under one's care.

As with all tasks, preparing a work area and having the necessary tools immediately on hand are very important--and probably more so when one is a blind parent with a very young baby. Changing a baby's diaper, for example, is often a rather messy business for anyone. As a blind mom, some extra precautions were quite helpful to me. On the two shelves below the change

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table, for instance, I made sure I had a bowl that I could fill with water if needed, change pads, a bar of baby soap, baby facecloths and towels, diapers ready for use, Baby Wipes, a box of Kleenex, a tin of Penitin cream and extra clothing, if there was enough room. A covered diaper pail was also placed beside the change table, where I could easily reach it.

Through trial and error, I learned to change a diaper with a minimal amount of mess, and was usually able to keep diaper rash at bay. Another important thing I learned was to make sure the dirty diapers were placed in the closed diaper pail as soon as possible. As gross as this sounds, some guide dogs find dirty diapers very interesting. Thinking that you might be able to put the diaper into the pail after you answer the door or the phone, for example, is not a good idea. It is best to clean baby and the entire change table area first before doing anything else.

When bathing my children during the first few months, I found it much easier to use the regular bathtub than the baby bath that came with the change table. I would place a facecloth or hand towel on the bottom of the tub so that the baby wouldn't slip, fill the tub with lukewarm water, just enough to cover their bodies, and holding their head and neck just above the water with my left hand, I would wash them with my right. Once they were able to sit up more independently, I learned quickly that I could not turn away from the tub for even a few seconds. I did this once, and Alena fell face-first into the water. I never made this mistake again!

When my children were able to eat solid food, spoon-feeding them was, for me, another challenge as a blind mother. I made sure they wore their larger bibs and, in at least two of our homes where there was wall-to-wall carpeting, I put a square plastic sheet under the highchair to protect the carpet. The plastic extended out maybe two to three feet on each side. Now that little hands could reach and grab things (and swipe them right off the highchair tray!), I also had the food jar or bowl out of reach on the kitchen table. The trick was to get some food on the spoon, bring it towards the baby without spilling its contents, and introduce it to the mouth. Since I have never been very good at holding things straight so stuff will not spill, the plastic sheeting on the floor was there to protect the carpet from me as much as from Philip and Alena!

Holding the spoon in one hand, I used my free hand to find the baby's cheek and turn his or her head towards the front of the highchair, and also towards the oncoming spoon. I would not chase them around the highchair; they had to come to the spoon, which I held over their tray. If they wanted the food, they very soon learned to turn towards me and let me slip the food into their mouths. In a short time, both babies actually guided my hand, and soon I was able to place the dish of food on their tray for them to eat independently.

I also learned some general but very useful tips. Babies quite regularly spit up, and they also slobber a good deal as their teeth are coming in. I had a good supply of bibs that I kept on Philip and Alena all day. When one was dirtied, I removed it and replaced it with another. In most cases, this prevented me from needing to change their clothing so often. To protect my own clothing, I always laid a receiving blanket or a small towel over my shoulder when I was carrying them in my arms.

Receiving blankets were also one of the important items to be kept in their diaper bag when we were shopping, travelling or visiting friends. When they became hungry, I was able to lay the blanket over my shoulder and nurse them under it. People knew what I was doing, of course, but all they could really see were the baby's feet. I realize there are many opinions on nursing babies in public, but this method is the one that made me feel most comfortable, and Philip and Alena do not seem to have suffered for it.

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When my children were young, I was not aware of any accessible thermometers, so I learned to find out if they had a fever by putting my lips on the top of their heads when they were babies, and when they had more hair, by touching my lips to their foreheads. I also found ways of having medicine applicators notched so that I could tell if I had the correct amount when drawing the liquid from the bottle.

Scraped knees and elbows and a few deeper cuts were as common an occurrence in our home, I imagine, as they are in families with two sighted parents. The best way I found to manage these situations was to get the child into the bathroom as quickly as possible and to calm him or her down enough so that they could take my hand and show me where the injury was. In this way, by touching it as gently as I could, I was able to figure out just how serious it was and usually how large a bandage I would need. Even while crying and screaming, they were always able to tell me how much it was bleeding and to help me trace the size of the wound with my fingers. Then it was a reasonably simple matter of cleaning the area and putting antibiotic ointment onto the pad of the bandage. I then asked them to guide my hands to the injury so that together we could cover it properly with the bandage. I believe this helped them to concentrate on other things instead of the pain.

For reading stories to my children, I was able to purchase and borrow a number of print/braille books and, in fact, I have kept a few of them for sentimental reasons--and for reading to my grandchildren, if I should have any!

If I needed to leave the house and my husband was unavailable to help, I would carry the kids in a snugly on my front when they were tiny, and in a carrier on my back when they were older. By the time Alena was able to sit in the back carrier, Philip was four years old and able to hold my right hand when we went out to do errands, while I held my guide dog's harness with my left.

My marriage to my children's father ended when Philip was eight years old and Alena was five. He is a sighted man. Driving the kids to Beavers, Cubs and dance classes, and helping me to get the weekly groceries were all ways in which his help made my life easier. When I became a single parent, it was important to organize my life in a different way. Although each of us had both children on numerous occasions, Philip lived mainly with his father and Alena lived primarily with me. Apart from those times when I could arrange rides for her, Alena became accustomed to travelling to and from appointments, ballet and art classes, and to Brownies with me on foot or on public transit.

Shopping trips had to be well organized and well timed, as, like most single parents, I no longer had another parent to fall back on for childcare when I left the house. I had an arrangement with a couple of grocery stores where I made a list of the items I needed, faxed it to the store, and then went with my guide dog and bundle buggy to pick up the order later the same day. This was a method that generally worked very well for me with large orders, and one I preferred.

When Alena began school, I established the best working relationship I could with the principal and her teachers. A good deal of print information came home in her backpack that she could not read to me, and I often had to take it back to the school to be read or have it explained over the phone. Volunteer readers who helped me with my mail were able to assist me to a certain degree with school-related correspondence but since it became clear to me that Alena needed some extra help with reading and math, very soon I needed the school's assistance to find a tutor. When this was arranged, her schoolwork improved.

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The school years presented me with challenges quite different from those I experienced at home when my children were very young, but these are best explained another time.

Alena is now 19 years old and is attending her second year at the University of Ottawa's School of Management. She lives with me and my second husband. Philip is 22 and lives in Edmonton, Alberta, where his father also resides. He is the Assistant Manager of a store in West Edmonton Mall, does some contract work for Travel Alberta, and also some modelling for the fashion section of an Edmonton newspaper.

OPENING UP THE WORLDBy: Jo Dunaway

Editor's Note: This article is reprinted from Transition (BC Coalition of People with Disabilities), November/December 2005.

Eddy Morten and interpreter Brenda Erlandson sit facing one another and, as their hands move in an intricate dance, the words pour out. For my benefit, Brenda speaks them aloud. She is interpreting through tactile signing for Eddy who is deaf-blind.

Eddy was familiar with this way of speaking before he needed it himself—his older brother was deaf-blind from birth and this was how they communicated.

Eddy, who has Usher syndrome type 1, was born deaf, but did not begin to lose his vision until the age of eight. The retina of his left eye detached, leaving him with sight only in his right eye. His vision slowly deteriorated and almost disappeared by the time he was 10 or 11.

Many years ago, surgery to repair his left eye was unsuccessful. At about age 20, he began to develop cataracts which he had removed two years ago.

"It's better now," says Eddy. "Before the cataracts were removed, it was like looking through the windshield of a car that has been outside all night—all foggy and fuzzy. But the cataract surgery cleared away a lot of the fog. Now it's like looking through a tunnel--a very narrow tunnel, but clearer."

He can see best in the evening light and wears dark glasses to ward off glare in bright sunshine.

Eddy is an athletic, confident and independent person who likes to be out doing things. Whether it's a long walk or a trip to the grocery store or attending a meeting or workshop, his constant companion for the last seven years has been Harmony, a friendly black Labrador.

"We're always together," says Eddy. "She's a trained guide dog and she's very hardworking. It's her job to keep me safe."

But when they are at home, Harmony is off duty--a big loveable pet who greets guests and plays with Eddy's two young sons when they visit.

Until about 15 years ago, Eddy communicated primarily through visual use of American Sign Language. "I needed to be quite a distance from the other person to be able to see their hand movements. With tactile signing, it's the opposite--I have to be very close to the person. It's an intimate way of talking."

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Although tactile signing makes use of American Sign Language, the speakers are actually feeling the shape of the signs in the movement of each other’s fingers. It's a technique that takes getting used to.

"Some people aren't comfortable with such close contact," says Eddy. "But, once they get comfortable, it's fine."

Eddy says there is also no denying that some people are just a better fit together. He and Brenda have worked together and been friends for more than nine years and their conversation is rapid and fluid. "Very rapid!" laughs Brenda. "Eddy is a fast talker."

He is also a humourous, animated speaker, enhancing his signing with body language and gestures, as well as smiles and other facial expressions.

Brenda, and the other interpreters Eddy calls on, are his personal supports--supports who think and breathe, rather than other disability supports like computers or hearing aids.

Eddy will book an interpreter when he attends a workshop or a meeting of the BC Association of the Deaf-Blind. Interpreting in such a setting is intense--physical, visual and auditory information need to be interpreted. So two or more interpreters will usually spell each other off. An intervenor may also be there to guide Eddy to his destination, describe his surroundings for him, and help him do things like locate refreshments and washrooms. Intervenors do interpret, but they don't do the intensive interpreting needed for something like this interview.

In addition to his personal supports, Eddy also has the help of some technology. Many bank machines, for example, now have braille on the keypads, so he can perform his own transactions. He frequently carries his own device about half the size of a laptop with both a regular and a braille keyboard. In addition to holding downloaded information from his computer when he is at meetings or travelling, it can be used to communicate with a sighted person through written messages. He also communicates via email by using a program that greatly increases the size of the lettering or another program that converts it to braille. All of these disability supports enable Eddy to live as independently as possible--which he has always tried to do.

He has always been involved in athletics and by high school had decided that he was going to be an Olympic wrestler. He participated in the Paralympic Games in 1980 and 1984. Then wrestling was dropped as a Paralympic event but undeterred, Eddy switched to judo. His thrice-weekly training sessions were with sighted and hearing athletes, so Brenda accompanied him to relay visual signs and instructions given by the coach. Eddy won a Bronze Medal in judo at the 1988 Paralympic Games in Seoul. A rotator cuff injury put an end to judo, but Eddy continues to run, lift weights, work on a stationary bike, and walk with friends or with Harmony.

"I can see a little bit, so I'm confident on my own," he says. However, not everyone is, so Eddy helps out.

He works with a program to help members of the small deaf-blind community get into the broader community and become more independent. He helps train intervenors and guides, and coordinates meetings between individuals and intervenors. "It's a very personal interaction, so it doesn't always work between two people. That's OK--if it's not a good match, we just try a different one."

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Eddy says that something as simple as a walk with a friend or intervenor can open up the world around a deaf-blind person. "They can tell you how the mountains look that day, describe your surroundings, tell you what the other people are doing--so you are part of it."

Tactile Signing: In tactile or hands-on signing, the receiver's hands are placed lightly on the backs of the hands of the signer to read the signs through touch and movement. The sign language used is often a slightly modified version of the local Deaf Sign language. This is especially the case when used by people with Usher syndrome, who may have first lost their hearing and later their sight. Non-manual elements of the deaf sign language, such as facial expressions, have to be substituted with information produced manually.

LIVING WITH MULTIPLE DISABILITIESBy: Carole Robertson Editor's Note: Carole Robertson is President of AEBC's Toronto, Ontario, Chapter. Living and coping with multiple physical disabilities presents many challenges. It is both a learning experience and an opportunity for personal growth. It has led me to reach out to many friends and family for assistance, which is much appreciated. For many years I've had back trouble, but while I was able to drive a car, it didn't present too many problems with leading a very active life. I was able to go everywhere and sit down if the need arose. However, six years ago when I lost much of my sight, the problems started to multiply. As I learned to adapt to not seeing, a challenge in itself, I found that I was severely restricted in transportation because of my back. I could not walk or stand for more than a minute or two, so I could not rely on public transportation. I had to depend upon others to drive me everywhere. My back became worse, my diabetes became unpredictable, and I developed other complications, such as vascular disease in my legs. I started going out with a seat cane and still use it at times. I found it was less painful to use a transport chair whenever there was any distance to cover. This made it harder to go out with friends who found it difficult to lift a wheelchair into their cars. I was spending more and more time at home. Although I was very busy, I was used to a much faster pace of life, and found that I was filling the hours with listening to taped stories and music, which would put me to sleep. This made me more sedentary. As I am very task oriented, I started to feel unsatisfied and unfulfilled. How could I become more active, energetic and have feelings of accomplishment? This world is so interesting that there is never any reason to be bored. I became more active in the committees I already belonged to, and am attempting to learn new skills to challenge myself. I'm even considering more exercise in the hopes that it will improve my stamina and my ability to walk. Positive thinking and action, and realizing all of the wonderful things I do have, make a big difference. The challenge is continuing to be active, even if it is by taking one small step at a time. Facing multiple disabilities need not be as grim as it appears, if one learns from the experience and welcomes new opportunities. TOWN STILL HASN'T GRASPED ISSUES OF ACCESSIBILITYBy: Michael and Doreen Yale

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Editor's Note: This letter appeared in the Huntsville Forester, August 23, 2006: www.huntsvilleforester.com

Why should the concerns of people with disabilities be an essential component of all Town planning and new projects? Why should disability rights be on an equal footing with cost considerations and feasibility studies?

As every one of us inevitably ages, it is a certainty that we will develop some type of temporary or permanent disability, or someone in our immediate family will do so. This certainty applies to all--whether a resident or a tourist, whether wealthy or not, whether a property-owner or a tenant, and whether an average person with their feet on the ground or an official on high.

Equally important is that some of us already have a disability, but are nevertheless entitled to, and guaranteed under various legislation, equal rights and opportunities leading to a similar quality of life equal to all other non-disabled persons.

When the advisory committee for persons with disabilities was first appointed five years ago, early in the first term of the present regime, the committee had the duty of providing a voice for people with disabilities in the rapid changes being then planned. The ODA (Ontarians with Disabilities Act) also required Huntsville to establish such a committee.

Perhaps never in our community's history was so much expansion and overall change to occur. It was obviously necessary that all Huntsvilleans be involved and taken into consideration.

As many of you know, my wife, Doreen, and I resigned from this committee two years ago, when the Mayor changed the ground rules, in our opinion, and put new restrictions on the work of the committee.

Our resignations were precipitated when the Mayor informed us that advocacy for the rights of disabled people was not part of our mandate; that we were advisory in nature, and that we could only recommend but could not proactively lobby for necessary changes to ensure accessibility and equality.

We were assured that the new protocol would work and that the Town was indeed aware of and concerned over the rights of residents and visitors with disabilities.

Has the procedure worked? Has Huntsville really understood and taken seriously the concerns of disabled folks?

I acknowledge that the new theatre and Town Hall are largely accessible. Just last week, audible traffic signals were activated at two downtown intersections. We can take pride in these examples. But let's be honest. These are also glitzy showpiece projects with good photo ops attached to them.

But our concerns apply to the daily lives and seemingly small issues which affect the quality of life for people with disabilities.

Item. We are all aware that while grandiose projects go up on all sides of us, indebting the Town for decades, local streets and sidewalks often remain unrepaired. While roads are smoothed and improved near new condo sites, old residential streets are dotted with potholes and their sidewalks marked with cracks.

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Item. There is a lengthy crack running along in front of our new Civic Centre, which feels almost like a small gully in places. The Yales brought this to the attention of the powers that be recently but it still remains there, ready and waiting for someone (even you!) to trip and fall. Must it take a broken leg or senior citizen's dislocated hip in order to repair it?

Item. The Town received about a dozen phone calls this past week, complaining about the noise the new audible pedestrian signals were emitting, particularly at night. Doreen was in the process of discussing with the district the question of the volume of the locator tones, and other possible adjustments to the new system, when the signals were shut down totally by the Town, just after noon last Friday. The Town Acting CEO said that the installer was not available to make adjustments until early this week.

The thing to do, the right and appropriate course of action, would have been for the Town to inform those who complained that the system was new, would shortly be adjusted, and to please be patient and understand that many people in town used and needed the new audible signals. In doing so, the complaints of a dozen took precedent over possibly hundreds of people with disabilities or who are elderly and need those crossings.

At the switch-on ceremony for the audible crossings, Town representatives were present but the Town Acting CEO didn't feel it necessary to let us know that she was present. This may sound petty but for a blind person who cannot see who is in the crowd, the onus is on the sighted person to come up and make themselves known. We were personally quite hurt by this lack of courtesy.

Item. Skateboarders scare the hell out of me, my guide dog and many people I know, with and without disabilities. Yet, despite bylaws and stated police concerns, there is not a day when skateboarders race down my street or along downtown sidewalks, in their own version of The Tour de Huntsville. There is no question of the danger they pose and the threat they bring to increase the number of disabled persons in our midst. I know a skateboard park is coming, but what about our health and safety in the meantime? What about strict enforcement of the law?

Item. There is a new walkway, a steep ramp, running from Main Street down to the Town docks, alongside Pizza Pizza, as mentioned in last week's edition of "The Forester". It was designed with a brick surfacing, allegedly to dissuade skateboarders. It has no handrail. It is for pedestrians only, it is alleged.

First of all, it will not discourage skateboarders who will no doubt take it as a challenge, their own personal Mount Everest to conquer.

Secondly, pedestrians do include mothers with strollers, a person with a wagon or cart, a bicycle rider, and so on. What it does not include is a person in a wheelchair. The ramp is dangerously steep. It appears that the only group excluded from use are those using a wheelchair.

Sarah Brown has told us that, budget permitting, the Town is hoping to build another walkway for wheelchair users next spring. This is unacceptable and nonsensical on many grounds. Separate but equal is not acceptable; it is called apartheid. A delay in accessibility, lack of accessibility from the beginning, makes no sense. The second path will take more room and cost money that should have been saved by doing the first path properly in the first place.

To exclude only wheelchair users from the one existing new path is to deny them equal access based on disability. Human rights legislation frowns upon this. My understanding also is that the

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Building Code requires new construction of indoor ramps to meet a certain grading standard. Whether this outdoor walkway falls under the Code or not, I am not sure, but the grade is steep and was not easy for me even with my dog, and was very difficult for an elderly friend of mine who walks with a cane.

To make this last example worse, the plans for this inaccessible and brick-surfaced ramp were not shown to the Accessibility Advisory Committee until the day they were passed by a Town Council vote. The expected discussion and negotiation did not take place.

You hopefully get the point by now. If so, you are an enormous jump ahead of the Town Council and staff who don't get the point yet.

Progress, growth and prosperity are good things, at least to many people. But many other people are marginalized in our community. They live in substandard or inadequate housing, because affordable housing is increasingly hard to find. Many live in poverty. Many have a range of disabilities, preventing full participation in Town life. These are the people the Yales are concerned with the most.

Their issues should and must concern all of us. Their anxieties and frustrations could be yours, in the blink of an eye. We only prove our worth as a community if we care as much for the least advantaged and give them voice as we do for the most advantaged.

People with disabilities must be equally involved in community thinking and planning at the first instance, from the very beginning of discussion and decision-making.

Huntsville's officialdom does not get it yet.

INTERNATIONAL CORNER

MAGIC TRAIN CHUGS ALONGThe Lifeline Express, the World's First Hospital on a Train, Reaches Remote Twilight Zones Where a Doctor is as Invisible as Hope, Writes Tanaz K. Noble

Editor's Note: The following article is reprinted from Tehelka, India, September 8, 2005.

"The results show success--more than we ever imagined," says Zelma Lazarus, CEO of Impact India Foundation, which runs the "Magic Train". Also known as Lifeline Express, they quietly move around the towns and villages of India conducting operations on split lips, visual impairments, other facial corrections and limb operations. "A minimum team of 40 surgeons and doctors donate their services daily on our train," says Lazarus.

The Lifeline Express has, over the last ten years, restored sight, movement, hearing and corrected cleft lips of over 300,000 disabled children and adults in 52 projects covering 16 states in the country. There are too many magic stories which run with the magic train.

A tribal couple waited with their three small children to be admitted on the train. They were born blind. There seemed little hope for them, "but we did not give up," says Lazarus. "Their case histories were faxed to the World Health Organization in Geneva and the prompt response

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informed us that a world-famous eye surgeon was passing through Delhi that very day en route to Japan. Today, all three children can see."

The volunteers are totally committed. Two young people, a boy from Canada and a girl from Australia, volunteering on the train, met and got married. On their wedding day, they requested guests to bless them not with gifts and flowers, but with contributions to the Magic Train.

The Lifeline Express, the world's first hospital on a train, is a unique collaboration with the Union government in taking a hospital to people in remote areas.

"Our reach is across the vast Indian subcontinent with 600,000 villages using the entire Indian railways--70,000 km of rail track--the largest in the world. Who would have ever thought that we would have made it this far along the track?"

The train has completed 75 projects in almost all the states of India and has medically served about 400,000 disabled poor in the remotest parts of the country.

Not to mention its six-month mission of mercy at the earthquake site in Gujarat in 2001, where it was the only hospital in the area; the others had crumbled.

"We were the first to arrive. We were in the middle of a sponsored project when we just had to leave. The Express was the only hospital for miles and miles. Donations started pouring in from abroad and we ended up staying there for six months," says Lazarus.

The Lifeline Express continues its mission not only in India, but also in China with three trains, a train in Central Africa, and a riverboat hospital in Bangladesh.

"We are now focusing on a replicable pilot project for India. Our aim is to reduce disability among one million people by 50 percent in the tribal belt of Thane District in Maharashtra in Palghar, Talaseri, Jawhar, Dahanu and Mokhada Blocks," says Lazarus.

They've already started identifying 50,000 school children for hearing and vision disabilities and providing them with corrective glasses. "This is just a start-up project," says Lazarus.

For its selfless service, Lifeline Express received the United Nations Award for Excellence in Public Service worldwide in the year 1994. This is a wonderful experiment where professionals donate their time, their talent, and their lives to become volunteers in such large numbers.

"This is largely due to the credibility we have established. We don't make big promises and then fail to live up to our commitments. Whatever we do, we do it with great pride and as best as we can," says Lazarus.

You can now understand why the Express is magic to those who, after years of suffering, discover that their wounds too can be healed.

TACTILE GUIDANCE SYSTEM INSTALLED ON MRT TO HELP THE VISUALLY HANDICAPPEDBy: Nur Azira Aziz

Editor's Note: The following article is reprinted from Channel News Asia, Singapore, February 26, 2006.

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It is more convenient for the blind to travel on MRT now.

39 stations around the island have been retrofitted with a tactile guidance system to help the visually handicapped get around more independently.

The S$7.4 million project is part of the government's long-term plan to improve the land transport system to make it more accessible and user-friendly.

The system will enable the visually handicapped to walk safely to the ticket counter, up the lift and eventually the train platform.

It also helps the blind to find the toilet easily.

Ng Swee Kuen, Association of the Visually Handicapped, said: "Actually for us, we are not afraid of going out, if there is something (that) can guide us, it's really useful to be independent. Let's say if (we) can't get anyone to help us, this tactile (system) is very helpful to us."

Six remaining stations, which will be part of the Circle Line, will be retrofitted by the middle of this year.

New public buses will also be wheelchair-friendly.

Some SBS 150 buses with manually operated ramps will be on the roads as early as April this year.

But will these improved facilities for the disabled come at an inconvenience for others?

"I don't think it will be very much inconvenient unless for people in a rush, then maybe it could be a little frustrating for them," said one commuter.

"Probably they need to stop longer at certain bus stops to allow these people to get up, but on the whole I think it's a very human thing to include these people as part of our daily lives," said another.

"I think the slight (in)convenience--we should bear with it to help these people to travel easier. In fact, if you(‘ve) travel(led) overseas before, you'll find that the bus drivers will get out of their seat and help the elderly and even the people with babies and all that, help them with prams to help them in their vehicle, I don't see the big deal."

The LTA is also spending $60 million to upgrade its road facilities over the next three to four years to cater to the elderly, wheelchair users and those with young children in prams.--CNA/ch

LOTOS WORKS TO IMPROVE ACCESS TO RECENT PARLIAMENTARY ELECTIONS IN AZERBAIJAN FOR AZERI CITIZENS WITH DISABILITIESBy: Jennifer Geagan ([email protected]), World Institute on Disability

Editor's Note: The following article is reprinted from Disability World, Issue no. 27, December 2005-January 2006: www.disabilityworld.org

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It is estimated that there are at least 250,000 persons with disabilities of voting age in Azerbaijan, a small, oil-rich former Soviet republic on the Caspian Sea. Like other developing countries, people with disabilities in Azerbaijan comprise at least ten percent of the population, yet remain largely invisible to the decision- and policy-makers who design and implement government programs.

In early 2005, LOTOS, a coalition of disability organizations located in Baku, the capital, began exploring strategies with the World Institute on Disability to make the November Parliamentary elections more accessible to Azeri voters with disabilities. The Azeri disability community and the Central Election Commission (CEC) had already advanced electoral access in the 2003 election, when the CEC worked with the Azerbaijan Society of the Blind to develop and test a ballot guide enabling blind voters to cast an independent ballot. The CEC also implemented a "mobile voting" program, authorized by Azeri election law, which enables homebound voters to participate in elections.

As a result of LOTOS and WID discussions, International Foundation for Election Systems (IFES) Senior Advisor for Human Rights, Jerome Mindes, travelled to Baku in July 2005 with financial support of World Learning/Azerbaijan and the USAID mission. Mr. Mindes met with leaders of disability and civil society organizations, the leadership of the Central Election Commission, representatives of USAID, the Organization for Security and Cooperation in Europe, and international democracy NGOs to assess the capacity of the electoral environment. His report provided specific recommendations for making electoral and political processes in Azerbaijan more accessible to citizens with disabilities, and found that the Azeri Election Law presents no insurmountable barriers to the full participation in elections by citizens with disabilities. The climate for at least modest advances in electoral access and participation of Azeris with disabilities for the November 2005 elections was positive and possible.

However, LOTOS did their own informal research and discovered that, in addition to addressing physical access to elections and ballots, the reality of engaging disabled Azeri voters in the election process was more complicated. LOTOS found that disabled Azeris, especially women, were ashamed to leave their houses, and many physically disabled people could not leave their houses to vote even if the polling places were accessible. Furthermore, many Azeris with disabilities did not have access to information about the candidates and felt that candidates don't ever address disability issues that matter to them, so they asked why they should go to all the trouble of voting anyway. The inaccessibility of most polling places may perhaps be Azerbaijan's smallest problem in engaging its disabled citizens in the democratic process.

In order to address the multitude of barriers facing Azeri voters with disabilities, LOTOS and WID proposed an ambitious project to increase the participation of individuals with disabilities in the November 2005 parliament elections through a voter education/voter registration drive in three pilot regions, and an election observation effort by citizens with disabilities and to strengthen the capacity of all of the disability organizations of LOTOS to participate fully in the electoral process by adapting an approach to citizen participation in elections that has been tested in over a dozen nations.

LOTOS would train the Central Election Commission, their regional staff and the poll workers at the polling sites to understand how to implement accessible elections for persons with disabilities and how to facilitate disabled people voting, including disability etiquette and the basic right of disabled people to vote. They would train disability leaders and members of all disability groups to understand their rights and procedures for the elections, and train journalists and public media

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staff (radio and TV) to promote public awareness and support for people with disabilities to participate in the elections.

LOTOS would also build ramps at key polling sites and would work with the national media to hold a candidates forum.

Unfortunately, in the few months available to prepare for and complete this work before the parliamentary elections, USAID was unable to provide additional financial assistance to fully implement the training activities and build access to the polling stations. However, LOTOS conducted two training sessions on disability awareness and disability etiquette for the polling station workers and workers of CEC, built ramps into two secondary schools in Baku that were polling stations, informed people with mobility disabilities living in the district about the two accessible polling places, and recommended scenarios for public service announcements to IFES and the CEC.

The CEC also took some steps to accommodate people with visual impairments by printing the ballots in braille but, unfortunately, although recommendations were made, the election process remained largely inaccessible to Azerbaijan’s deaf citizens, who were educated in schools using the Russian Cyrillic alphabet and could not read the election ballots that now use the Latin alphabet!

Looking towards the presidential elections in 2007, LOTOS hopes there will be ample time to implement the activities originally proposed for the 2005 elections. LOTOS plans to enlist the support of international funders and civil society NGOs, so that Azeris with disabilities become engaged in the political process and may fully participate in all future elections.

PRESIDENT’S REPORT: NEW CHALLENGES AND OLD CHESTNUTSBy: John Rae

Editor’s Note: The following are notes for an address delivered at this year’s Annual General Meeting of the Alliance for Equality of Blind Canadians, Kelowna, British Columbia (BC), May 6, 2006.

This year the Alliance for Equality of Blind Canadians/L'Alliance pour l'ÉgalitÉ des Personnes Aveugles du Canada (AEBC) is returning to its roots!

Founded as the National Federation of the Blind: Advocates for Equality (NFB:AE) here in 1992, and re-named the AEBC in 2005, Kelowna has always been the site of our National Office, but this is the first time we have held a membership meeting in Kelowna, and it's long overdue.

Canada's New Reality: On January 23, 2006, Canadians elected a new government, and Stephen Harper is now Canada’s 22nd Prime Minister. The Conservative Party is different, believing in less government, less regulation, greater flexibility for the private sector, and a hands-off approach to matters that are primarily reserved for the provinces. The new Conservative Government can be expected to focus more on traditional family values, the police and the military, instead of on multiculturalism, equity and the Charter of Rights and Freedoms.

This presents new challenges for all equality-seeking groups, including Canada's disability rights movement. Our movement as a whole, including the AEBC, must focus more on engaging

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politicians where we live. We will need to spend more time working with our provincial decision-makers. And this means building greater capacity through our chapters.

Highlights of the 2005-6 Year's Work: I can say with pride that the year just passed has been our most successful in terms of building our credibility at the federal level and with other disability rights organizations. We have taken our message to many new places and participated in many events for the first time. This report can provide only a brief summary of this work.

Voting Independently: AEBC's Elections Committee, chaired by Penny Leclair, has been very active in developing proposals for making Canada's electoral system truly accessible to electors who are blind, deaf-blind and partially sighted.

Following the January 23 federal election, approximately 30 blind, deaf-blind and partially sighted Canadians wrote individual letters to Canada's Chief Electoral Officer, and Linda Bartram, President of the AEBC’s Victoria Chapter, has filed a formal complaint of discrimination with the Canadian Human Rights Commission. We should all be extremely proud of our efforts to date!

We are ultimately seeking an electronic voting system, where we will have the opportunity to cast our vote independently and in secret, just as all other electors do. Switching to an electronic voting system will require amendment of the Canada elections Act, which will take time to achieve. In the short term, we are seeking other improvements including braille and large print on an improved template, a more accessible Elections Canada website, verbal announcement of their phone number on all radio and television ads, and improved training for poll staff.

What should be our focus--the political route, to convince Members of Parliament to amend the Canada Elections Act; the legal, to encourage more electors to file complaints with the Canadian Human Rights Commission; or the constitutional, to seek Case Development Funding from the Court Challenges Program to determine if mounting a challenge under Canada's Charter of Rights and Freedoms is a viable option? I trust we will pursue more than one of these options, as they are not mutually exclusive.

To the Supreme Court!: The AEBC, the Canadian Association for Community Living (CACL), the Canadian Hard of Hearing Association (CHHA), and Transportation Action Now (TAN) retained ARCH Disability Law Centre to seek intervenor status at the Supreme Court of Canada in the Via Rail case. The court has granted this request, and the case will be argued on May 19, 2006 (note: on May 19, the court reserved its decision on the Via Rail case until the fall).

For any members who may be wondering why the AEBC is participating in this landmark case, there are three major reasons: The organizations that have retained ARCH want to raise additional access issues concerning the inaccessible Renaissance train cars; we want to raise broader "equality issues" to affect how all statutes are interpreted; and the AEBC wants the court to know who we are in case we appear before it arguing our own issues, like the Canada Elections Act.

Assistive Devices: In 2004, the AEBC released the report, "Equality of Opportunity? A Report Card on Government Funded Assistive Devices Programs for Blind, Deaf-Blind and Partially Sighted Canadians", and today Linda Bartram is Co-Chair of BC's Provincial Equipment and Devices Program Committee (PEADC). This Government/Community Working Group has agreed upon a Vision for a long-awaited Personal Supports and Assistive Devices Program for BC, along with an agreement in principle on how such a program should be delivered. AEBC members believe such a program must be available in BC, and in every other province and territory in Canada (Please see Assistive Devices in Sight for British Columbians elsewhere in this publication).

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Education is Our Future: Itinerant teachers will have a profound effect on the next generation of blind Canadians. Robin East and Kim Kilpatrick made a presentation and staffed a booth at the 2005 Vision Teachers Conference in Halifax, Nova Scotia. This provided an opportunity to meet itinerant teachers from all across Canada.

Since then, we have attended the Annual Meeting of the Canadian Branch of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER), and we are participating in efforts to bring about the Expanded Core Curriculum (EEC) for blind students and expanded pre-school programs in Ontario.

New Barriers: While most of our work focuses on removing existing barriers, new ones continue to emerge. The new, hybrid electric car may be friendlier to our environment, but it is so quiet that it poses a danger to our safe and independent travel. Kim Kilpatrick of Ottawa, Ontario, prepared an article that has received wide distribution and a fair amount of media coverage.

National Needs Study: On November 2, 2005, the CNIB National Needs Study, "An Unequal Playing Field: Report on the Needs of People Who Are Blind or Visually Impaired Living in Canada", was released. It describes in stark detail the situation of persons who are blind and partially sighted, including chronic poverty, unemployment and isolation. During the launch in Ottawa, I described the study as "an indictment of the entire blindness system in Canada."

Presenting to the Parliamentary Subcommittee: Shortly after the launch, we joined the Council of Canadians with Disabilities (CCD) at the Subcommittee on the Status of Persons with Disabilities to discuss the content of the study. As I said on that day, "This was ‘a red letter day’ for Canada's disability rights movement, as it was an occasion when Canada's national cross-disability coalition, CCD, stood side by side with one of its national uni-disability members, the AEBC, to discuss blindness issues.”

CCD: Through our membership with the Council of Canadians with Disabilities, the AEBC has continued to play an active role in discussions concerning such diverse topics as Disability Supports, income security, labour market participation, the idea of a possible Canadians with Disabilities Act, and the International Convention on the Rights of Persons with Disabilities, which we hope will be ready for adoption by the United Nations (UN) General Assembly either late this year or early next.

Work with Other Organizations: We have developed stronger working relationships with several other national organizations. I spoke at the Annual General Meeting of Guide Dog Users of Canada (GDUC), and we have had follow-up discussions that I expect will lead at least to a cooperative working relationship between our two organizations.

In December, the AEBC participated for the first time in the annual celebration of the Canadian Association of Independent Living Centres (CAILC) to commemorate the UN's International Day of Disabled Persons. The presentations were simulcast throughout Canada on CAILC's website, and have been archived for those who could not hear the presentations live on December 2.

At last year's AEBC conference, we passed a resolution opposing the exclusive use of pdf files on websites, and we have been relying on that resolution regularly. AEBC's Web Design Committee Chair, Marcia Cummings, has offered advice on our access needs to the Canadian Association for Community Living, which is revamping its website, and is serving on a CAILC committee that is designing a virtual independent living (IL) site.

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I believe the IL Movement, which believes in community-based service provision where consumers themselves are in control and have choice and flexibility, could take on the delivery of some services for blind, deaf-blind and partially sighted individuals. But many IL Centres still need to develop a greater understanding of us and our service needs.

We have held meetings with Janice McNamara, Executive Director of the Canadian Hard of Hearing Association (CHHA), to discuss working collaboratively on elections, transportation, the Canadian Radio-Television and Telecommunications Commission (CRTC) and other issues.

New Memberships: The AEBC has become a member of three more organizations: the Court Challenges Program (CCP), the Accessibility for Ontarians with Disabilities Act (AODA) Alliance, and the Canadian National Society of the Deaf-Blind (CNSDB).

Committees: The AEBC's committee system is working quite well. They provide a vehicle for direct member participation in our wide-ranging work. Contrary to my own preference for broad-based participation, we have found that small focused committees tend to produce the greatest results. Nevertheless, I assure members that participation is open, and I encourage members to sign up and take advantage of these opportunities to make a difference!

Last summer, we received funding for two students to begin work on various aspects of accessible products. We established an Accessible Products Committee, chaired by Marcia Cummings, which is working on its next steps, determining which areas to focus on, and developing a list of manufacturers to approach.

Mentorship Program: To encourage more members to participate, and to better meet the needs of those we are mentoring, the Mentorship Program now focuses more on informal mentoring. The goal of the revised program is to provide mentees with a network of supports, and the Mentorship Coordinator will play a more active role, working with the mentee to help develop this network for each person.

Scholarship Program: Since 1998, the AEBC's Scholarship Program has given out 25 scholarships. The 2005 recipients were: Yves Brunet, recipient of the Alan H. Neville Memorial Scholarship, is working on a Master's program in Counselling at the University of Ottawa; Abebe Abay Teklu, the recipient of the T-Base Communications-funded Business, Education and Technology Scholarship, originally from Ethiopia, is currently a University of Victoria PhD student in the Faculty of Education's Department of Curriculum and Instruction; Quyen Le of Hamilton, Ontario, the recipient of the AEBC National Achievement Scholarship, arrived in Canada as a refugee from Vietnam at the age of 14, is now a fourth year McMaster University Psychology student, working towards her goal of becoming a clinical psychologist.

In 2006, the AEBC's Toronto Chapter will fund a fourth scholarship. Criteria for all four 2006 scholarships are available on the AEBC's website: www.blindcanadians.ca

New Policies: We have compiled all past membership resolutions, assigned them to committees, and continue to review and update actions taken twice yearly. Denise Sanders prepared a comprehensive package for all chapters with over 30 documents, including sample bylaws, job descriptions for executive members, fundraising, media tips, and membership development ideas. She also developed a comprehensive policy manual, including five sections: finance and fundraising, human resources, programs and activities, public awareness and advocacy, and reference materials.

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Awards: As a member of CCD, each year we have the opportunity to bestow the annual CCD Award on one of our members. This year's recipient is an individual who prefers to stay more in the background. She has developed numerous policies and focused on the internal side of our work. I am delighted to be able to give this year's AEBC CCD Award to our National Treasurer, Denise Sanders, who lives right here in Kelowna.

In order to recognize outstanding volunteer involvement in our organization, the Board voted to create the AEBC Volunteer of the Year Award, and Mike Hambly, President of our large Calgary Chapter, is the first recipient.

Funding: The past year has seen an extremely difficult fundraising climate for non-profit organizations, and the AEBC is no exception. Many donors contributed to various high-profile disaster relief campaigns; we changed our name; and there is even greater competition for the donor dollar.

Under the leadership of Fundraising Committee Chair, Rick Oakes, we continue to test a direct mail campaign, and have begun a new national initiative in Calgary with an automobile tow-truck operator. We hope to expand this fundraising activity to other parts of the country.

Thanks for Your Participation: I want to thank everyone who has participated in the past year's busy agenda--my Board colleagues with whom I work most closely, each Chapter President, our staff, and all members who have played a role in moving forward our agenda.

"The achievements of an organization are the results of the combined efforts of each individual," said former Green Bay Packers head coach, Vince Lombardi.

Future Priorities: We must continue to seek new members and to help all members to grow and find their niche within our organization. Many chapters have new executive members and new energy. This is very encouraging. We must continue to strengthen our organization by developing new ways of attracting and involving new members, especially younger individuals.

To better focus our work, we plan to merge the Membership Committee, chaired by Devon Wilkins, with the Mentorship Committee. This recognizes the increased connection between these two activities and our need for ongoing membership development.

Our listserv continues to be a place for lively debate of issues and the dissemination of useful information. One of the most fascinating discussions involved developing how we, as a group of blind consumers, define "equality." This remains a work in progress.

Part of this requires determining what services blind, deaf-blind and partially sighted Canadians need and want, who should deliver them and where, and to what extent consumers should be involved. This is a rightful and necessary role for consumers and a consumer organization such as the AEBC. We will need your thoughts and involvement as we continue to develop a more comprehensive view of equality, how we should approach the delivery of services throughout Canada, and how we should respond to the National Needs Study.

We can be proud of the active, hands-on Boards that have guided the former NFB:AE, as well as the AEBC. However, too much hands-on involvement continues to be required from these committed volunteers. We must move in new ways if we want to maintain the momentum we have developed, and become stronger and more effective.

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The Board has approved in principle the creation of a National Equality Coordinator, and we hope to initiate a national search to fill this position in the fall. It will be a full-time management level position. We expect the successful candidate to bring in some new ideas and help us move into an even more successful future.

We must engage decision-makers were we live.

We must continue to reach out to other organizations and build new alliances and partnerships, so our work can have greater impact towards achieving our mission statement: "To increase awareness of rights and responsibilities, so blind, deaf-blind and partially sighted individuals can have equal access to the benefits and opportunities of society." We believe firmly in the assertion, "Nothing about us without us." This gives our organization clear direction.

As a consumer organization, the AEBC has something to say on a wide range of issues and a rightful role to speak out, whether that be to politicians, transportation officials, website designers, software developers, automobile manufacturers, home appliance developers, medical practitioners, service providers or the media, which determines how our issues are discussed and how we are portrayed.

Our consumer voice needs to be heard whenever and wherever possible, but there are limits to what we can take on. Remaining active on the various fronts where our voice is needed requires new ways to increase our membership and our members' direct involvement. Your ideas are important and always welcome! It is the ongoing active participation from each of us that will continue to advance our extensive agenda!

Remember the words of Mahatma Gandhi: “If you want to change the world, be that change.”

Amandla!

IMPRESSIONS OF THE AGM AND MY STAY IN KELOWNABy: Judy Prociuk

Editor's Note: Judy Prociuk lives in Saskatoon, Saskatchewan.

I left Saskatoon on a beautiful spring day and boarded my plane to Kelowna, British Columbia, for the 2006 AEBC Annual General Meeting (AGM) at the Prestige Hotel. After a very brief touch-down at the Vancouver international airport, I was en route to Kelowna, arriving around noon on a Friday. It was a perfect day with the sun shining and the birds singing.

After quickly signing in at the hotel and getting reacquainted with my room-mate, Irene Lambert, we headed off for the afternoon focus group on leadership, facilitated by Colin Cantlie, former head of the Canadian Hard of Hearing Association.

I suspect that Colin, who was wearing two hearing aids, is an accomplished lip reader since, whenever anyone addressed him, he moved much closer to them. This also enabled those of us with residual vision to see him better. He did an excellent job of facilitating the discussion, saying that we already had good knowledge of the issues.

Colin talked about the character traits of good leaders. They should not, for example, be dictators,

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or afraid to admit they have made a mistake. Good leaders should also have followers who want to follow them; they must give the followers some cause or reason to belong to an organization.

Colin gave some examples of how things can and do go wrong in organizations. He said many groups fail because, when they try a tactic and it doesn't work, they get bogged down, assign blame and continue in this unproductive circle, instead of switching tactics or focusing on something else. He said everyone must learn to respect each other and not lose their temper. A little humour can go a long way, he said, and you can catch more flies with honey than with vinegar, to use an old adage.

Participants made many suggestions, and everyone who attended felt the workshop was an extremely worthwhile exercise. The three-hour session went by so quickly that it seemed like only 30 minutes. It is too bad that not all members of AEBC were able to attend.

Later that Friday evening, the Kelowna Chapter hosted a social with a wide selection of locally produced wines and a large assortment of delicious cheeses. Chairperson Chantal Oakes and her Central Okanagan Chapter did themselves proud in organizing the social and the Saturday AGM. Thanks also to the Oakes daughters, Tiffany and Whitney, who were available throughout the weekend to assist us.

On Saturday, May 6, the day began with a continental breakfast and registration continued. At 9 AM the meeting was called to order, and the approximately 44 attendees were introduced. John Rae gave his President's Report (found elsewhere in this publication), highlighting AEBC's activities and challenges over the past year. He also said that 2005 had seen a difficult fundraising climate for non-profit groups, including our organization, and that AEBC will have to pursue some new sources of funding.

At approximately 9:55, we were in for a special treat--we got to hear the Treasurer's Report directly from the auditor since he lives in Kelowna.

Treasurer Denise Sanders introduced John Diduch and promised that everyone could question him at the report's conclusion. The auditor being present to answer questions was especially important in light of today's tough climate for fundraising. John Diduch was reappointed auditor for the coming year.

Following the auditor's report, an hour was set aside to discuss the outcome of the CNIB Needs Study. The question asked was: Where do we go from here? Many very productive suggestions came out of the discussion, and everyone present felt it had been very positive. John mentioned that two or more resolutions associated with this discussion would come to the floor later that day; both resolutions were passed by AEBC's membership.

Just prior to lunch, there was a call for nominations and the following people were nominated as candidates for AEBC's board: Robin East as 1st Vice President; Anthony Tibbs as Treasurer; and Denise Sanders as Member Without Portfolio. After lunch, the three nominees had an opportunity to speak for five minutes each.

Then came resolutions. There was considerable discussion on the resolution that would have inscribed into the bylaws a guarantee of subsidies for Annual General Meetings, as well as increasing the number of proxies an individual could carry from five to seven. The resolution was amended to remove the part alluding to subsidies, but the resolution was defeated after considerable discussion.

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The resolution to require members to secure permission from AEBC's President before speaking publicly as a representative of our organization was also defeated. I felt particularly strongly that this latter resolution should not be carried. It was extremely close, with the floor having it winning by one vote, but it was defeated when proxy votes were included.

After the break, there was another call for nominations and, even though additional people were nominated, they declined to run. Robin East, Anthony Tibbs and Denise Sanders were all acclaimed in their respective positions.

John Rae presented Denise Sanders with the annual AEBC CCD Award. Marcia Cummings, AEBC's National Secretary, presented Mike Hambly, President of the Calgary Chapter, with a beautiful ceramic pot as the first recipient of the Volunteer of the Year Award.

After the presentations, we returned to resolutions. Unfortunately, there were more resolutions in the chapter package than time allowed for; only the first 11 were addressed, and the others died on the floor. Of the 11, nine were carried and two were defeated.

To read the text of the resolutions that were adopted at the 2006 AGM, visit: http://www.blindcanadians.ca/governance/resolution_list.php?year=2006

Just before adjournment, the Toronto and Victoria Chapters presented proposals for the 2007 conference. After listening to both presentations, we overwhelmingly chose Victoria over next year's Victoria Day weekend. The meeting adjourned at 5:30 PM on Saturday.

Everyone was free for the evening. Many AGM attendees congregated for a group dinner, and many also tried their luck at the casino with the coupons in their registration packages.

The whole weekend was very enjoyable. The weather cooperated beautifully, the Prestige Hotel was accessible, and the staff was accommodating. Thanks again to the Central Okanagan Chapter for hosting the 2006 AGM!

2006-07 AEBC BOARD OF DIRECTORS

President: John Rae, Toronto, Ontario; email: [email protected]

1st Vice President: Robin East, Saskatoon, Saskatchewan; email: [email protected]

2nd Vice President: Rick Oakes, Kelowna, British Columbia; email: [email protected]

Treasurer: Anthony Tibbs, Montreal, Quebec; email: [email protected]

Secretary: Marcia Cummings, Toronto, Ontario; email: [email protected]

Director Without Portfolio: Devon Wilkins, Collingwood, Ontario; email: [email protected]

Director Without Portfolio: Denise Sanders, Kelowna, British Columbia; email: [email protected]

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http://www.blindcanadians.ca/governance/resolution_list.php?year=2006


HIGHLIGHTS OF RECENT AEBC ACTIVITIES

* AEBC Meets with the Minister of National Revenue Concerning New System of Blindness Verification

Beryl Williams & Judy Prociuk met with the Honourable Carol Skelton, Minister of National Revenue, concerning the need for a method of blindness verification by the federal government, as provided for in membership resolution 2005-08, so that we do not need to obtain a doctor's letter each time we wish to qualify for programs and services.

2005-08: Registered Blindness Identification

Therefore, be it resolved at this Convention in Ottawa, April 2005, that the Alliance for Equality of Blind Canadians [AEBC] actively advocate, through all appropriate Government authorities, for the provision of an appropriate system of registration for Canadians, who fall within the eligibility criteria required for all current and future public and private exemptions, benefits and services available to them across Canada.

After a wide-ranging discussion on various options, Ms. Skelton said she would send the four recommendations from AEBC's brief to the Ministers of health and Human Resources and Social Development, and will get back to us by email.

For further background on this issue, please see AEBC's Brief on our website at: www.blindcanadians.ca/press_releases/index.php?BriefID=33

* AEBC Participates in CCD Council and AGM

At June's National Council and Annual General meetings of the Council of Canadians With Disabilities (CCD), CCD's 30 years of work was celebrated, and lively discussions took place on a possible national disability act and the state of the United States disability rights movement.

Marie White was re-elected for a third two-year term as Chair of CCD, and AEBC's President, John Rae, was elected 1st Vice President on the CCD executive.

* AEBC Active in Ontario Human Rights Controversy

The introduction of Bill 107: the Human Rights Code Amendment Act into the Ontario Legislature has prompted considerable controversy among human rights advocates in Ontario. The Bill is designed to overhaul the way in which human rights complaints are dealt with in Ontario.

Both sides agree the Ontario Human Rights Commission could use improvement. Supporters of the Bill believe the proposed new system will greatly streamline the consideration of individual complaints and give more time for work on systemic cases, while opponents fear the new system will only weaken the current level of protection and make it tougher for complainants to gain redress from discrimination.

Three days of public hearings took place in August in London, Ottawa and Thunder Bay respectively, and further hearings are to be scheduled in Toronto this fall. The AEBC has applied

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to appear at the Toronto hearings and is currently preparing a Brief, which will be available soon in the Briefs section of our website www.blindcanadians.ca or by contacting our National Office.

For further information on this debate, visit the Accessibility for Ontarians With Disabilities Act's website at: www.aodaalliance.org

* AEBC Active in Human Rights Cases

Making use of the legal protection that is in place is important in enforcing our rights. As a human rights organization, the AEBC is called upon to assist both members and non-members in pursuing cases before human rights commissions or the courts.

We are currently involved in cases regarding inaccessibility of Canada's electoral system, access to the education system, the extent to which a driver's licence can be considered a bona fide occupational requirement, and access to commercial websites.

For further information, please contact John Rae, AEBC President, at: [email protected]

* AEBC Participates in CATSA Act Review

The AEBC submitted a Brief, entitled "TRAVELING WITH DIGNITY," and Joyce Main participated in the Toronto hearing of the Canadian Air Transport Security Authority (CATSA) Act Review. The AEBC Brief and discussion focused on the need for consistent treatment by CATSA staff, increased and ongoing consultation with representatives from the disabled community, and ongoing training.

The Brief can be found on our website at: www.blindcanadians.ca/press_releases/index.php?BriefID=35

* Draft United Nations Convention Adopted

On August 25, 2006, the Draft UN Convention on the Rights and Dignity of Persons with Disabilities was adopted in New York.

DPI (Disabled Peoples’ International) Chair, Venus Ilagan, commented: "At the beginning of the current negotiations process, DPI made clear our view that there were no human rights to which disabled people do not lay claim. The draft instrument accepted here today recognizes and entrenches our rights in the UN Human Rights framework, and in this way is a huge victory for us all."

The next step is adoption by the UN General Assembly, after which the process of gaining ratification by nation states must be secured.

For a copy of the text of the draft Convention and Optional Protocol, please visit www.un.org/disabilities/convention/ or contact: Edoardo Bellando, UN Department of Public Information, Tel. (212) 963-8275, Email: [email protected]

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NEW RESOURCES

* Hello Yellow is a Canadian telephone directory service providing listings from the Yellow Pages that is currently available for Alberta and southern Ontario cities. Call 310-yelo or 310-9356.

* The Jewish Guild for the Blind has published a new $4.00 (USD) booklet called The Sighted Guide Technique: How to Safely and Effectively Offer Help to a Blind or Visually Impaired Person. To order, call (800) 539-4845.

* Enrichment Audio Resource Services offers free cassettes for people who are losing vision on topics such as eating without embarrassment, indoor mobility, managing medicine and grooming. To order, call (800) 843-6816.

* The Hadley School for the Blind has several new/updated distance-education courses available tuition-free, including Blindness Basics, Diabetes: Toward Self-Management, Safety in the Home, Introduction to Braille, Basic Nemeth Code, Using Excel and Internet Basics. For details, call 1-800-526-9909 or visit: www.hadley.edu

* VIP Games Zone offers three online educational games for blind children free of charge, including Typer, ABC and Numbers Stuff. All have built-in speech capabilities and the on-screen display enables sighted people to help children learn the games. Visit: www.vipgameszone.com

* MathTrax is a free computer application from NASA that helps blind students to understand math. Its text descriptions and "audio graph" allow students to "see" and "hear" mathematical equations. To download or learn more, visit: http://prime.jsc.nasa.gov/mathtrax/

* If you are a disabled parent or a parent of a child with disabilities, you can ask advice or share helpful tips in a new forum: http://disabledparents.proboards81.com/

* Dialogue: A World of Ideas for Visually Impaired People of All Ages is now published bi-monthly in large print, braille, 4-track cassette and email formats. Effective January 1, 2007, the annual subscription rate for all subscribers will increase to $42 (USD), but orders placed before December 31, 2006, will be processed at the current rate of $28 (USD). Contact Blindskills Inc. at 1-800-860-4224, via email at [email protected] or visit: www.blindskills.com

* Woodworking for the Blind Inc. provides monthly CD recordings (MP3 file format) of articles and features from woodworking publications, as well as of full-length books from time to time. Contact: [email protected]

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http://www.blindskills.com/

mailto:[email protected]

http://disabledparents.proboards81.com/

http://prime.jsc.nasa.gov/mathtrax/

http://www.vipgameszone.com/

http://www.hadley.edu/


* The Blind Handyman List is for blind people who want to share ideas about projects around the home or yard. To join, send a blank message to: [email protected]

* The Blind Phones List is a discussion list concerning the accessibility of cell phone features and applications, but not geared to any particular product. To subscribe, send a blank email to: [email protected]

* For information about accessibility issues regarding portable media players, such as Apple's iPod, consult a new online resource, Portable Media Player Portal: www.hartgen.org/portable.html

* Anna Dresner has created a blog where she'll update information relevant to her books: "Braille.com and Beyond", "Finding eBooks on the Internet", and "The iPod Experience". Visit: http://nbpupdates.wordpress.com

* A free screen reader called Thunder is available from a new non-profit community-interest company from Choice Technology. A computer running Windows 2000, XP or Vista, as well as speakers or headphones, is needed. Visit: www.screenreader.net

* Accessible Search, from Google Research Labs, prioritizes search results according to web-page accessibility. In addition to standard search criteria, it ranks pages according to how much graphic content they contain and how easy they are to navigate using keystrokes only. Visit: http://labs.google.com/accessible/

* Jim Byrne, a pioneer in the field of accessible web design, has published a new book for web developers called 60 Hot to Touch Accessible Web Design Tips. To purchase, visit: www.lulu.com

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http://www.lulu.com/

http://labs.google.com/accessible/

http://www.screenreader.net/

http://nbpupdates.wordpress.com/

http://www.hartgen.org/portable.html

mailto:[email protected]

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