(dis)ability 2013 by jobpostings magazine

Living with a rare iLLnessConquering invisible disabilities Can be amongst the greatest Challenges, but its possible!

ParaLymPian Josh vander vies | adventurer sPencer west

FaLL 2013

Fall 2013 | JoBpostings.Ca

Feature19 Living with a rare iLLness Rare diseases affect over 300 million people worldwide, but there is still a stigma around unknown conditions. We examine the difficulties associated with having a rare disease and shed light on this shadowed kind of disability.

the Front Pages06 success stories Nicola Chivers, HR analyst at TD Bank Group, talks ideas and enthusiasm to fulfil your goals.

08 getting outta here Going abroad is certainly more of a chal-lenge for people with disabilities, but with organization, research, and motivation, anything is possible.

10 the home advantage The Canadian government is investing time and money into programs for all people. Find out how you can benefit!

insPiration12 water doLLar disaBiLity Mountain climber Spencer West was born with sacral genesis but doesnt let it stop him. Read on to hear his incredible tale of scaling Kilimanjaro to raise funds for water in Africa.

16 reaching your PotentiaL Born without arms and legs, Josh Vander Vies has become an inspirational figure, playing boccia for the Canadian national team, triumphing over his disability in every aspect of his life.

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THE FRONT PAGEStable oF Contents

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JoBpostings.Ca | Fall 2013

THE FRONT PAGES ad indeX

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indeXPuBLisher nathan laurie [email protected]

associate PuBLisher mark laurie [email protected]

communications and ProJect manager david tal [email protected] @davidtalWrites

editor James miChael mCdonald [email protected] @mcjamdonald

art director anthony Capano [email protected]

deveLoPer mishraz ahmad bhounr [email protected]

contriButors kate aenlle, angelina attisano, Jamie bertolini, lauren della vedova, nailah king, hillary di menna, laura eley, kyle reynolds, megan santos, sam Weltman

nationaL account manager mary vanderpas

education account manager shannon traCey

Brand amBassador bernie [email protected] @careerunicorn

photos from istockphoto.com are used throughout this issue; individual artists have been credited.

masthead contactwhoshiringiFc td bank Financial group02 FintraC07 imperial oil

07 export development Canada11 Canadian pacificoBc the home depot

schooLindeX18 humber, the school of business, Continuing education

generaLads03 neads 05 awake Chocolate15 Canadas luckiest student23 Career edge24 scholarships CanadaibC insurance institute of Canada

WANT A PART-TIME JOB THAT DOESNT

SUCK?Dont limit yourself to working

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the latest positions from Canadas top employers.

Want to make a difference?FINTRAC is recognized as a leader among the worlds financial intelligence units. Join the fight against terrorist financing and money laundering!

To learn more about FINTRAC and its employment opportunities, visit http://www.fintrac-canafe.gc.ca

Vous voulez faire une diffrence? CANAFE est reconnu comme tant un chef de file parmi les units de renseignement financier autour du monde. Joignez-vous CANAFE dans la lutte contre le financement des activits terroristes et le blanchiment dargent!

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Jobpostings publishes its (dis)ability issue annually. it is distributed to over 105 universities and colleges in Canada. Contents of this publication are protected by copyright and may not be reprinted in whole or part without permission of the publishers.

success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome. booker t. Washington

DisabilityAwards.ca

Canadas portal to awardsand scholarships for

students with disabilities


THE FRONT PAGES editors note

We all face challenges. There are plenty of typical obstacles: getting good grades, finding the right job, dealing with difficult coworkers, even making the perfect omelette! Unfortunately, some of us have more challenges than others, daily struggles to overcome.

Growing up with a disability isnt easy. Simple tasks that able-bodied people overlook can be a constant burden for people with disabilities. These troubles, big or small, can give us reason to hesitate and limit ourselves. Because of this, many people with disabilities are only using a small portion of their po-tential.

The reason behind this issue is to motivate you to do more and to show you that nothing is impossi-ble. Struggles, for the able-bodied or for people with disabilities, give each person a unique perspective on the world and the chance to rise above their challenges using their own experience and abilities.

In the pages to follow, we speak to a number of incredible indi-viduals with disabilities that have achieved greatness, pushing past their obstacles to compete in the Paralympics, travel the world, and even climb Mount Kiliman-jaro. We look at rare diseases in an attempt to shed light on an often overlooked kind of disabil-ity. Weve also included informa-

Push your Limits

tion on financial opportunities for people with disabilities to ensure everyone has a fair shot at a stable future.

Although the people interviewed have gone on to do amazing things and live fulfilling lives, we believe everyone has the ability for greatness; sometimes we just need the inspiration to bring it

out. Hopefully this issue provides you with the needed boost to push your limits and conquer your own Kilimanjaro.

From the desk of James Michael McDonald

04


success storiesWondering how to get to the top? read on to find out how this young

professional is succeeding in the business world.

What drew you to HR within the financial services industry?The HR program at York University caught my interest for many reasons: the courses aligned well with my per-sonality, and there was an abundance of specialization avenues, but with a defined career and certification path.

How did you find your current position?I joined TD as part of an Ability Edge Internship (Career Edge Organiza-tion) in which I completed several ro-tational assignments across Corporate HR. I was initially offered a contract position with the Learning Technol-ogy team, which I gladly accepted. Several months later, I was invited to join the Talent Management team in a permanent position as a Specialized HR Analyst.

Tell us a bit about your responsibilities.My duties have evolved dramatically

as I joined the team in the middle of an ongoing implementation project. Initially, the focus was to deliver, pro-mote, and transition knowledge from our testing team to the frontline users and long-term support team. Recent-ly, Ive been working with business leaders to provide analytic measures of success, challenge, and opportu-nity.

Whats the most challenging aspect of your position?Managing expectations and staying on track. In a large corporate environ-ment, the stream of emails is constant and it is a challenge to determine and communicate which requests align to the teams objectives, and to balance my ability to provide assistance with my capacity to do so.

What is the most rewarding part of your job?Resolving problems, whether that in-volves sharing technical knowledge,

troubleshooting computer issues, or delivering solutions to business part-ners through more formal project work.

What do you think it takes to be successful in this career?Passion for learning combined with do-it-yourself enthusiasm and undy-ing persistence. When given a task, always do some background research before going back with questions. This keeps you informed and your manager will appreciate the higher-level questions and the ideas you can now contribute.

Any future career aspirations?My ideal position would involve idea generation. I excel at brainstorming and enjoy the challenge of analyzing a tricky situation and offering poten-tial game-changing solutions. Id also like to be a mentor, offering insight to inspire, influence, and shape perspec-tives of newer employees.

Any advice you have for students looking to land their first job?Enthusiasm is your greatest asset; al-ways focus on possibilities, not road-blocks. If your brain is focused on the reasons it wont work, it doesnt think of ways it could. Know what makes you unique, infuse this trait into your elevator speech and use it to articu-late your worth when asked Why should we hire you?

nicoLa chiverscomPany: td bank group

Position: hr analyst

emPLoyed: 2 years

degree: honours in bachelor of human resources management

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THE FRONT PAGES suCCess stories

Theres more than one way to make a difference. Thats why at Imperial Oil we offer multiple career paths that align with your ambitions. From developing new innovations in the oil sands to delivering high quality petroleum products, whatever your career, youll always have a place on a team thats working towards creating a better future.

Hiring students and graduates from engineering, science, business and trades & technology.

imperialoil.ca/careers

Discover whats possible for your career.

www.edc.ca/careers | www.edc.ca/carrieres

Export Development Canada | Exportation et Dveloppement Canada

Interested in international trade, global markets and the impact of Canadian exports? EDC offers you a unique and rich opportunity, and is recognized as a global centre for trade expertise. Our employees are among the most accomplished trade experts in the world.

What we look for: Bachelor of Commerce/Business Administration and/or MBA with a concentration in Finance, Accounting, International Business or related field (Sales, IT, HR etc.); individuals who have a desire to work in a fast-paced environment with competing priorities and deadlines; ability to interpret financial statements and strong analytical skills; commitment to providing excellent customer service; ability to communicate effectively in both official languages and must be legally eligible to work in Canada (Canadian Citizen or Permanent Resident).

EDC is committed to employment equity and actively encourages applications from women, Aboriginal people, persons with disabilities and visible minorities.

Vous vous intressez au commerce international, aux marchs mondiaux et aux rpercussions des exportations canadiennes? EDC vous offre alors la chance de vivre une exprience riche et unique. En effet, EDC est un centre dexpertise du commerce extrieur reconnu lchelle mondiale, et nos employs sont au nombre des plus grands spcialistes du domaine.

Ce que nous recherchons : baccalaurat en commerce/Administration des affaires et/ou MBA (finances, comptabilit, affaires internationales) ou dans un domaine connexe (ventes, RH, informatique etc.); dsir de travailler dans un milieu affair, o les priorits peuvent tre divergentes, et les chances, serres; trs bon esprit danalyse et capacit dinterprter des tats financiers; engagement fournir un excellent service la clientle; aptitude communiquer dans les deux langues officielles et aptitude lgale travailler au Canada (citoyen canadien ou rsident permanent).

EDC souscrit au principe de lquit en matire demploi et invite les femmes, les Autochtones, les personnes handicapes et les membres dun groupe de minorits visibles poser leur candidature.


getting outta here

experience the most during your time abroad.

Making the decision to study abroad isnt always easy. There are lots of things to consider like finances and how prepared you are to live in a foreign country. The decision can be made even more difficult when you have to take your disability into con-sideration.

One way to ease your transition into a foreign country is to try and learn the language of the country youll be going to. Although this is not a

specific disability-related tip, know-ing the official language is extremely helpful. You dont have to be fluent, but learning some basic phrases can go a long way if you should ever need assistance.

Before you start packing away lan-guage books, there are some other things you should make sure youve coveredfor instance, finding out what studying is like in the country youll be living.

Uwe Hahnewald, a business admin-istration student, is visually impaired. When he decided to go to a different country to study, he made sure to do his research upfront.

I like to know a little bit about where I am going, he says. I familiarized myself with the subway and bus sys-

tem, or which shops are in the area I am living in.

Getting to know the neighbourhood and city youll be living in can be a great help in making a smooth transi-tion into your new surroundings. Do-ing research can also give you an idea of how accessible certain areas are, as well as what the public transporta-tion system is like, should you require something like Torontos Wheel-Trans service.

According to Melissa Nisbett, com-munications manager with the Cana-dian Bureau for International Educa-tion (CBIE), students can find out in advance what kind of environment theyll be in by speaking directly with the schools that they plan on attending.

Institutions can provide assessment

THE FRONT PAGES studying abroad

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tests for students to identify issues and follow up with students to identify the best locations for each student, she says. Students can do their own re-search for institutions by contacting the accessibility office, or the inter-national student offices of the places they are interested in.

Hahnewald agrees. Get in touch with the school to see whether they offer disability services and what kind of accommodations they offer. If pos-sible, try to get a hold on a former disabled student who can share their experiences with you.

Speaking with students like Hahn-ewald and getting a feel for what life in a foreign country will be like for someone who has a disability is a great way to get the next best thing to a first-hand experience. Knowing

what youre in for before you get on a plane might also make the decision to stay or go much easier.

Hahnewald also recommends making a trip to the city where your school is, as studying abroad is a long-term decision and, sometimes, you just need to experience things for your-self. He was fortunate enough to have vacationed in the country where he studied so he had an idea of what life would be like for him if he lived there.

Getting assistance from organizations well before you get to your new loca-tion. Organizations like CBIE, for example, encourage their over 150 members, (which include colleges, universities, and partner organiza-tions), to serve vulnerable groups in-cluding individuals with visible/non visible disabilities.

We also provide sessions for our members on the best practices for stu-dent placements at our annual confer-ence, says Nisbett. Our members prepare their students through assess-ments with either the international student office or accessibilities office.

There are many other organizations out there that assist students with dis-abilities to achieve their post-second-ary education goals, like the National Educational Association of Disabled Students (NEADS). They encourage the self-empowerment of post-sec-ondary students with disabilities, and advocates for increased accessibility at all levels so that disabled students may gain equal access to college or universi-ty education, which is their right. Or-ganizations like NEADS may also be beneficial to students with disabilities, since NEADS board members are all consumers with disabilities, with the exception of the open rep.

When making the decision to study abroad, students may overlook travel accommodations. Queens University, for example, produced a fact sheet for students with disabilities hoping to study abroad that outlines everything you need to know before you pack your bags. It includes links to guides, videos, mailing lists, and other re-sources from reputable organizations in this field like Transitions Abroad, as well as region-specific resources.

Uprooting yourself to study abroad is arguably one of the most exciting and challenging experiences for a stu-dent. Hahnewald, who had a great experience studying abroad, recom-mends that other students who want to do the same give it a shot and not let their disability determine whether or not they should go. I recommend studying abroad because it expands your horizons, he says. I think con-fidence, organization, and research is everything [if you want to study abroad]. The more I know upfront, the easier it was. | Kate Aenlle

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Supporting people with disabilities is an essential part of ensuring that they have bright and promising futures, es-pecially when it comes time for them to find employment. The Government of Canada is taking steps to ensure that people with disabilities meet their career goals, through the Canadian Economic Action Plan.

Last year, they invested an additional $30 million over three years in an opportunities fund. According to the Ca-nadian Economic Action Plan, this investment will en-able more Canadians with disabilities to obtain work expe-rience with small- and medium-sized businesses, as well as raise awareness among employers of the contribution people with disabilities can make to their business, and en-courage them to hire people with disabilities.

In a news release from the Human Resources and Skills Development Canada, The Honourable Diane Finley, Minister of Human Resources and Skills Development, describes why it is important to invest money in programs to help people with disabilities find employment. Canada

needs all of our available talent at work, says Minister Finley. That is why Economic Action Plan 2013 is increasing opportunities for people with disabilities, help-ing them gain the skills and train-ing they need to better participate in Canadas labour market.

Another way the Canadian Eco-nomic Action Plan is increasing opportunities for employment among people with disabilities is by trying to propel the increase in their employment through the Ca-nadian Employers Disability Fo-rum. The program will be man-aged by employers, for employers, to support education, training and sharing of resources and best practices concerning the hiring and retention of people with dis-abilities. This will ensure that the skills of people with disabilities will be promoted, in order to show employers that theyre valuable to the workforce.

These plans and programs will hopefully increase employment among people with disabilities. Re-

ports show that employment rates for people with disabili-ties are on the rise and, hopefully, the continued progress of the Canadian Economic Action Plan and the Canadian Employers Disability Form will keep this trend going.

In the 2013 government budget plan, people can expect the continuing support for these programs. It outlines:

The introduction to a new generation of Labour Market Agreements for Persons with Disabilities by 2014, which will better meet employment needs of businesses and the employment prospects of people with disabilities.

Reforming and extending the Opportunities Fund with $40 million per year starting in 20152016, in order to provide more training solutions for people with disabilities.

Extending the Enabling Accessibility Fund, a fund that supports capital costs of construction and renovations to improve physical accessibility for people with disabilities by $15 million a year.

The budget plan also stated, since 2006, the governments top priority has been the economy and job creation. In years to come, these programs should help create more op-portunities for employment for people with disabilities, as well as increase their accessibility which, in turn, will pro-mote a more diverse workforce. | Kate Aenlle

the home advantageCanadas investment in people with disabilities.

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THE FRONT PAGES government investment

Canadian Pacific (CP) is committed to employment equity and diversity. Through Workplace Accommodation Policies, CP is ensuring all eligible employees are able to come to work every day.

The decision to relocate CPs Cal-gary headquarters to its Ogden Yard presented a unique opportunity to demonstrate the companys desire to provide workplace accessibility to all.

Peter Quaiattini, who works as a da-tabase administrator, has been ac-tively involved with planning CPs new headquarters to meet and exceed accessibility and employment equity requirements.

CP is an inclusive employer, says Pe-ter. It is critical that every component of our office, from internal and exter-nal applications, parking, to our wash-rooms, are accessible to everyone.

Peter believes the same principle holds for CPs external relationships, You never know who is on the other end of the keyboardperhaps a customer or fellow employee with a vision im-pairment or a motor-skill deficiency.

Peter, who is legally blind, says he en-joys working with CP because work-ing in such a large company has al-lowed me to excel in what I can do, and to focus on that, rather than on what I cant.

The level of expertise that Peter dem-

onstrates in his field belies the fact that he is legally blind. Since the time I joined CP, the company has provided me with the tools required to excel in whatever Ive been asked to do.

For example, Peter was provided with the JAWS adaptive screen reader pro-gram, which converts text into speech.

As adaptive technology has advanced, so too have the standards to which corporations are held. With the full support of CPs executive group, Pe-ter has worked successfully to ensure CP stays ahead. With the upcoming move to Ogden Yard, CPs Facilities group consulted with Peter to ensure his safety and needs were being met.

Members of our Facilities group have shown a keen interest to learn the re-quirements to make Ogden safe and accessible, both inside and out, for those of us who are visually impaired.

In the design and implementation of the plans, weve been working hard to ensure the facility will be welcoming to all, and that special needs are con-sidered.

Special consideration has been taken for lighting and air flow, wheelchair-accessible washrooms and hallways, automatic doors on the main entry and washrooms, and lower-height kitchen counters allowing for accessible sinks and microwaves. And, of course, the office furniture will be adjustable for individual needs and comfort.

Canadian paCiFiCs neW ogden headquarters

weLcoming and incLusive

In addition, Facilities has been work-ing with CPs Signals and Commu-nications group, the City of Calgary, external safety suppliers, and the Canadian National Institute for the Blind (CNIB) to ensure that pedestri-an crossings, roadways, and pathways around the Ogden entrances are ac-cessible and safe for everyone to use.

These considerations include ramped curbs with tactile walking surfaces at sidewalk intersections, and an audible beacon at the pedestrian rail crossing used as an orientation tool to deter-mine the direction of the continuing pathway for the visually impaired.

Employees are already looking for-ward to the new amenities that the new building will offer such as a gym, cafeteria, running track, outdoor seat-ing areas, a reflection room, a private location for daily prayers or down time due to sensory impairments, and plenty of green space.

There will also be a Mothers Room for women to tend to pre- and post-maternity requirements. Outside the building, there will be both special needs and expectant mothers desig-nated parking spots.

CPs new headquarters are approxi-mately 12 kilometers southeast of downtown Calgary. The main build-ing is two floors, comprising 214,000 square feet. Employees will begin re-locating in August 2013.

THE FRONT PAGESCanadian paCiFiC


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water doLLar disaBiLityspencer Wests inspiring treks raise funds for water in africa.

Feeling thirsty? Most often, that brief longing for hydration can be quenched by a quick trip to your kitchen tap, (unless youre blessed enough to indulge in a Brita water filter). But what if access to drinking water wasnt so easy? What if, instead of 15 steps, you had to walk 15 kilometres to a source of replenishment? Sadly, this is the case for millions of people in developing nations like Kenya, Ethiopia, and Tunisia, where sources of clean, drinkable water are scarce.

Words Kyle Reynolds // Photos Free the Children

spenCer West


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Its a sad reality, but its not entirely unsolvable. And ac-cording to Spencer West, nothing is impossible.

West is a self-proclaimed normal guy who loves swim-ming, mountain climbing, and playing Mario Kart. He may argue that he is no different from you, but at a total height of two-foot-seven, many (mis)perceive him as oth-erwise. Born with sacral genesis, a genetic disorder that af-fected his lower spine and prevented him from uncrossing his legs, West underwent surgery to remove his lower limbs at the age of five.

Initially, West felt like he would never become a contrib-uting member of society. But today, with the support of

friends, family, and thousands of people across the world, he is now part of a movement that has successfully brought clean water access to 100,000 people.

Since 2008, West has been redefining possible by taking on a series of seemingly impossible feats, including a gru-elling climb up Tanzanias Mount Kilimanjaro and, most recently, a 300-kilometre trek from Edmonton to Calgary. In the past five years, West has transcended his physical differences and proven that he is far from what many once referred to him as: disabled.

It all started when his friend asked him to volunteer to build a school in Kenya for underprivileged children. Feel-ing discontent with his job and detached from material po-sitions, West heavily contemplated the option.

When my friend invited me to go to Kenya, I was like, Thats crazy. I cant find happiness here in North Amer-ica, Im not gonna find it in Kenya, says West. Alas, he took a leap of faith and hasnt looked back since.

That was my biggest fear: trusting my gut and going on my own, he says. Once I overcame that and stopped lis-tening to what society said, and did what I thought was right for me, thats when things started to get better.

Upon sharing his story with a group of children in Kenya, a young girl expressed that she didnt know something as traumatic as losing ones legs could happen to white peo-ple, too. That one phrase inspired West to use his story to motivate people to not only look at challenges differ-ently, but to get involved with something theyre passion-ate about. He found solace in joining forces with Free the Children and immediately began his journey to bring sustainable clean water projects to communities inflicted by severe drought.

Today, West serves as an international leadership facilita-tor in Kenya, India, and at the Arizona-Mexico border. He also leads hundreds of volunteer students on the Me

MOUNT KILIMANJARO IS THE HIGHEST FREE-STANDING MOUNTAIN IN THE WORLD AT 5,895 METRES OR 19,341 FEET ABOVE SEA LEVEL. SPENCER

CLIMBED MT. KILIMANJARO IN SEVEN DAYS, MOSTLY ON HIS HANDS.

15,000

10,000

20,000

5,000

654321 7

DAY 7 - 19,341 FEET -


INSPIRATION

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to We foundations international trips. Last June, the world watched as West conquered Mount Kilimanjaro and raised more than $500,000 for his cause. He used his wheelchair for part of the walk, but tackled about 80 per cent of the trek on his hands. Despite the difficult terrain and his friends violent confrontation with altitude sickness, West admits it wasnt his toughest challenge.

The challenge for We Walk 4Water was actually much harder than Kilimanjaro, says West, referring to his most recent hike from Edmonton to Calgary. We were doing about 30 kilometres a day, which is almost a full marathon, for 11 days. It was the same motion over and over again so your joints were just destroyed by the end.

West decided to embark on the walk with his two closest friends after learning that during the dry season in Narok, Kenya, the average family must travel 15 kilometres to ac-cess clean water. Additionally, about 80 per cent of serious illnesses in developing countries are connected to poor wa-ter and sanitation. Determined to find a solution and raise awareness, West walked in solidarity with those suffering in developing nations and was joined by the likes of singer/songwriter Nelly Furtado, Survivor winner Ethan Zahn, and actor J.R Martinez.

According to West, he was overwhelmed by the public re-sponse, and was particularly optimistic about the support

he continues to receive from young children.

Those are the kids that inspire me: that work so hard to overcome bullying, that work so hard to raise money to build a school, that work so hard to run the campaigns, says West. And thats why I continue to do what I do, because they are the ones that are effecting the biggest change.

Wests best friend, Alex Meers, joined him on both excur-sions and attributes Wests success to how he makes people feel when they are around him.

He is just a genuine person who pushes his own limits and encourages others to do the same in their own way, says Meers. Its rare to come across meaningful friendships with people who encourage you to bring out your best.

He and West both agree that it doesnt require losing your legs or having a traumatic experience to become a motiva-tional speaker or to make a positive impact on the world.

I think its really important to look at something that youre passionate about and [be] able to talk about that correctly, says West. With any journey, you have to take some risks and step outside of your comfort zone in order to move, in order to grow. At the end of the day, regard-less of whatever Im doing, I just want to know that I did everything that I could to make the world a better place.

spenCer West on day siX oF his seven day Climb.

spenCer West

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reaching your FuLL PotentiaL with a disaBiLity

born with limited use of his arms and legs, Canadian paralympian Josh vander vies turns cants into cans.

INSPIRATIONJosh vander vies

When you try to define the word dis-ability, its often associated with an inability to perform certain everyday tasks that most people are able to do. But for 28-year-old Canadian Para-lympian Josh Vander Vies, that as-sumption is far from the truth.

Born without arms and legs, Vander Vies is a two-time Paralympian and boccia player for the Canadian Na-tional Team, and models himself to be an inspirational figure for those with and without disabilities. At a young age, doctors doubted his abil-ity to cope without the use of his limbs, but he has since proven the critics wrong. Vander Vies is a UBC graduate, has competed and traveled around the world, and lives a more-than-normal life with his partner and family. He discusses the importance of striving to live a normal life despite having a disability in his blog Disabil-ity is Not Negative, which was posted on his website.

Its up to adults with disabilities to build positive attitudes about them-selves and other people with dis-abilities by doing ordinary things in creative and amazing ways, writes Vander Vies in his post. And through his athleticism, and willingness to share his story to audiences around the world, he has proven to be that spokesperson and role model. Giv-ing up is the easy way out, he writes. Not giving up, risking your ego, and working hard at accomplishing a tough goal is being alive. Success will follow.

Its inevitable that there are many

questions that follow a disability at birth or later in life. People often won-der how this affects everything from their personal life to their potential future careers. However, Vander Vies stresses that a disability isnt what stops you. Other things do a great job of this though: negative attitudes, giving up, not taking chances, or not working hard, he says.

Those born with disabilities often-times are more sheltered and pro-tected by their parents, Vander Vies writes. This can be especially dam-aging. Kids without disabilities are allowed to take chances and do risky thingsdont forget to give that op-portunity to your child with a disabil-ity as well.

He discusses the importance of par-ents fostering positive attitudes for their children with disabilities. It is up to parents to support their child when the going gets tough and they want to throw in the towel, he writes. Often enough, failure hurts, but any failure can be turned into a learning experience.

Without the support from his fam-ily, courage, and determination to be bigger than his disability, Vander Vies would not be where he is today: train-ing and competing internationally, and speaking to audiences of thou-sands.

Kids with disabilities need to learn the value of hard work because they will be working hard for the rest of their lives ... There are many negative things in the world. Disability is not one of them. | Megan Santos

image sourCe: Jd booth

CONTINUING EDUCATIONbusiness.humber.ca/ce

CONTINUE YOUR EDUCATION IN BUSINESS; EVENINGS, WEEKENDS, ON-CAMPUS,ONLINE, ON YOUR TIME.


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Today, there are roughly 7,000 different types of rare dis-eases affecting approximately 2.8 million Canadians.

Some of the diseases certainly may cause you to maybe be disabled, some diseases may affect your neurological cognitive function, says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disor-ders (CORD). The single thing that all kinds of rare disor-ders have in common, is that theyre very hard to diagnose. For some, it can take years to identify. The doctor may or may not agree theres something wrong, nobody will know what it is, and it many take many years in chasing down specialist after specialist, and test after test, she says.

CORD is an umbrella organization for rare disease groups across Canada and works alongside governments, indus-tries, clinicians, and researchers to develop treatments and services to for all rare diseases nationwide. Currently, CORD is working on developing an orphan drug policy in Canada, says Wong-Rieger, which would increase access

to drugs for rare diseases for Canadians and also improve the access to these drugs ... so that patients can actually have these drugs covered under the drug plans because most of them are quite necessary.

An orphan drug refers to the medication used to treat rare diseases. Theyre called orphan drugs because in the past, companies and researchers who were developing these drugs ... would often abandon them because it cost so much to develop the drug, she says. There is no direct cure for existing rare diseases and, according to Wong-Rieger, the medication that is prescribed simply treats symptoms linked to the disorder (headaches, inflamma-tion, etc.) However, there is no actual treatment for the dis-ease itself, thus explaining the significance of a drug policy.

Wong-Rieger describes today as the most exciting time for orphan drug research and development. Certainly, 3035 years ago nobody paid attention to them, she says, but now, especially with the orphan drug policies that have

Living with a rare iLLnessthey may be classified as rare, but today rare diseases affect over 300 million people worldwide.

Words Megan Santos // Illustrations Pay404 Media

rare illnesses


rare illnesses

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taken place in the US, Europe, and coming into Canada, theres a renewed interest in financial support for research and development on these rare diseases. Additionally, the increasing interest in genetics today is a benefit since 80 per cent of rare disorders are genetic. Now that weve mapped the human genome, she says, we know how to identify many cases genetic defects and theres a huge amount of interest in it and lots of money is going into it.

Along with cancer research, development of rare disease treatment is considered the fastest growing interest in terms of healthcare.

Its an amazing time for people with rare diseases because,

It took four years for Carrie Gallagher to finally under-stand that she suffered from more than just a sinus infec-tion. Gallagher, an account manager and health and well-ness trainer for Balancing Lifes Issues, suffers from a rare disease called granulomatosis with polyangiitis, (GPA for short). Affecting roughly one in 25,000 Canadians, GPA is an autoimmune disease that damages the small blood ves-sels of the kidneys, lungs, sinuses, and other organs.

Gallagher says that as an active individual who exercised regularly and took kickboxing classes, she knew something was wrong when she began to feel ill and experienced diz-ziness and rashes.

I just never felt right; this went on for about three or four years, she says. I was constantly feeling like I had a sinus infection and just a terrible cold because Id be stuffed up all the time out of the blue and then it would go away the next day.

Looking for answers from specialists, Gallagher says that, for years, no doctor had any idea what it might be. It wasnt until an evening in early January 2012, when Gal-lagher began to cough up blood, that a diagnosis arrived.

It was really blood in my lungs from blood vessels burst-ing from the disease, she says, after doctors had initially thought she suffered from pneumonia. After rushing to the emergency room, she was finally diagnosed with GPA within 24 hours.

For the last year and a half of living with GPA, Gallagher says she always promised herself to be positive.

I think, of course, its very scary, especially at a young age and especially in terms of a career, she says. I think the advice that I would give to people is when something hap-pens (like illness or death), just look at the positive of it.

Gallagher attributes her strong support system for helping her deal with GPA.

like I said, up to a few years ago nobody cared and no one did anything, says Wong-Rieger. Twenty-five years ago, people thought of rare diseases as people with two heads or something and they had no idea what were talking about.

Since the public, governments, and researchers have be-come better aware of the existence of rare diseases, there has been an even bigger push to find cures.

We take a look into the lives of three women, living and working with three different rare diseases. They take us through their diagnosis process, and share their fears on how they believed this would ultimately affect their careers and personal lives.

carrie gaLLagher aCCount manager, health and Wellness trainer

granuLomatosis with PoLyangiitis (gPa) one in 25,0000 people


Becky Dennis believes humour is the best remedy in cop-ing with her rare disease. Dennis, an author and marketing guru, has been living with encephalitis (which, in laymans terms, is the swelling of the brain), for the last five and a half years. Affecting up to 10 per 100,000 people, encepha-litis can be acquired in many ways including car accident and bacteria. She contracted the disease through a mosqui-to bite; however, the diagnosis process was far from simple.

It took them two and a half years, which was scary from a job perspective because I was constantly at the doctors appointments, she says. Initially, Denniss doctor had be-lieved she suffered from a stroke or may have had multiple sclerosis. But finally, after meeting with a doctor in Boston, Dennis was diagnosed with encephalitis.

The onset experience of the encephalitis had been a scary time for Dennis.

I was very afraid; the first six months I was very ill and

Becky dennis author oF brain WreCk, ChieF marketing oFFiCer

encePhaLitis 510 per 100,000 individuals

At the time, I was dating my then-boyfriend so he knew me when I was normal, healthy, and graduating from col-lege, then the stage of not feeling good all the time, and of course when I was diagnosed.

Gallagher is proud to say she is medicine free today, after months of taking Rituxan and a high-dosage of Predni-sone, (a type of steroid). Frequent visits to her doctor for blood work and specialist appointments have kept her away from needing the medication today.

The best way to say it is I live with it, I do things myself to maintain it, says Gallagher. So I try to maintain things I can control and my lifestyle just to be as healthy as pos-

sible in any way to help myself from flaring up again. To accomplish that, she maintains a gluten-free diet to avoid any inflammation and makes sure she gets eight hours of sleep every night.

I know it sounds silly but its really important to do these things because, when youre living with something like this, the better the chances you are living without another flare.

Since her diagnosis, Gallagher has also began doing re-search to inform others of her condition and to stay posi-tive in the face of adversity. I want to learn everything I can to help others, she says, and use that in my career.

was sleeping probably 16 to 18 hours a day, she says. So I would have to set an alarm for the meetings that I ab-solutely couldnt miss. Along with the sleepiness, Dennis says she felt confusion and short-term memory loss. She had a difficult time with everyday tasks, like fixing her hair or remembering how to simultaneously walk and talk.

The onset is the most severe part of the illness itself; then if you start to recover different things start to come up, she says. I look at my encephalitis as a blessing and a curse because a lot of people have recovered quite well, but the curse is a lot of my symptoms are invisible to most people, so they dont see how hard I have to work.

As a marketing officer, Dennis job description relies heav-ily on meetings and presentations.

People ask me a multi-part question, so I have a pen handy to write down multiple parts of the question, she says. Its sometimes a scary experience because when youre

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Mine started off as a tremor in my right pinky finger, says Soania Mathur. For the last 15 years, Mathur has been living with Parkinsons disease, and for 12 of those years she has practiced as a family doctor, a career in which she continued to pursue at the time of her diagnosis.

Parkinsons disease affects about one in every 100 people over the age of 60, so it occurs more often than a rare dis-ease. What makes Mathurs diagnosis unique is that she dis-covered she was living with Parkinsons at 27 years old. Af-fecting only five to 10 per cent of those diagnosed, Mathur has what is referred to as young onset Parkinsons disease, which includes anyone with the disease under the age of 40.

At 27, just as Mathur wrapped up her studies in family practice and readied herself to pursue a career in the field, she was diagnosed with Parkinsons disease.

[The tremor] was just intermittent and very occasional, so of course, being a doctor I ignored it until it spread to the rest of my hand and ultimately my arm, she says. By the time it became more persistent in my right hand, I went for an evaluation from a colleague of mine and he diagnosed young onset Parkinsons disease at my clinical exam.

Unsure of how this would affect her career, Mathur says she went into denial.

It was very difficult, but I ended up practicing for 12 years

with the Parkinsons. For the first two years it was manage-able, she says. It was difficult to help my patients through their issues when I was dealing with trying to hide my own.

At the 11-year mark of her career and life with Parkinsons, Mathur says she decided to temporarily put her practice on hold. I went on short-term disability for about three or four months just because I was burning out.

She decided to work part-time in attempts to make her return back into the field, but her worsening symptoms and side ef-fects to the medication, (which can sometimes be worse than the symptoms themselves), kept her from practicing.

My husband said youre just going to drive yourself into the ground, essentially minimizing the productive life Ill have after, says Mathur. My neurologist basically put it this way to me: do you want to walk out of the office or do you want to crawl out? I said I choose to walk out and it just became unmanageable to work so thats why I left.

Although Mathur falls in that five to 10 per cent, she contin-ues to strive to live a positive life for herself and her family.

For my children, I think its important for them to see a positive role model to understand that they will face obstacles in their lives, she says. Ultimately how they ap-proach those obstacles will define them as human beings and strong women that I hope they will be.

soania mathur Family physiCian

young onset Parkinsons disease (under 40 years oLd) aFFeCts 5 to 10 per Cent oF those diagnosed

doing presentations and somebody asks you something, in my head Im like could you please not do this to me?

Despite the symptomsthe confusion and loss for words at timesDennis strives to be a role model for others. If theres anything I need to offer right now, its being that

voice because I am more capable than a lot of other peo-ple who have survived this. She says shes always been the type of person to laugh even at the toughest times. I guess Im thankful that my sense of humour wasnt compro-mised because thats what really helped me get through.

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rare illnesses

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