from the Editor….

Vol. 9 Issue 1 July 2013

Greetings! W i th the Commonwea l th Government committing billions of dollars to the full implementation of the National Disability Insurance Scheme by 2017 it can be claimed that the needs of people with disability, and their carers, is being heard and acted upon across Australia like never before. Amidst our natural cynicism towards the behaviour of our political masters, both major parties should be applauded for their commitment to this vital initiative. H o w e v e r t h e e v e n t u a l implementation of the NDIS is not cause for us to rest on our laurels and feel that we have achieved all righteousness. Far from it. For instance, there are many parents struggling to find appropriate community accommodation for their child with a disability. Aging parents are worried about what care there is for their child when they become too old to care. So let us not think of the NDIS as the end of the journey. It’s just the start.

* * * * * * * * * * Feel free to share this newsletter with your friends. If you don’t already, let me know if you would prefer to receive this by email. Email me (address above) with the names of anyone who would like to be added to the mailing list. Your feedback is always welcome.

Enjoy the read.

Rev Trevor Whitney Disabilities Ministry Chaplain

UCA, Presbytery & Synod of SA

Pastoral Relations

email: twhitney@sa.uca.org.au

Index

From the Editor 1

Story 1

L’Arche in Adelaide 2

Resource Website 2

Poem 3

Book Review 3

DDA 4

Prayer 4

Kid’s Books 4

A L’Arche home: a mother’s hope

For 24 years my husband, Andrew and I have lovingly cared for our 27 year old daughter, Kelly. At 4 years old she contracted viral encephalitis and began to have seizures. Gradually she lost her language and independ-ence. Some days now even swallowing is difficult. She needs constant sup-port and assistance with all things. She represents a very vulnerable group of people. Try to imagine your-self in a place of very deep vulnerability, a place where you can never express your needs, or say how you feel because you cannot speak, a place where you are unable to express any emotion. Imagine having to depend on some-one for your every need, every day. Imagine, if you can understand but are unable to let anyone know, and therefore everyone assumes that you don`t. Imagine the magnitude of your loss if you were once able to speak and be independent and are now no longer able. This is a place of the very deepest vulnerability and dependance. It is also a place for potential abuse and ne-glect. You will never hear the cries of these people in our society because they cannot speak, they will always be hidden. Kelly needs constant care by a community of people who are present with her and love her. We know that as we get older we will be unable to do all that we are doing now. But we also believe in a loving ever-present God who knows all things and who`s spirit abides in and with his people. It is a God who truly cares for the weak and who knows all things. Where could we find the kind of care that truly reflects God`s unconditional love, especially for his most vulnerable people? Our search was painful and long. We had no peace till we found L`Arche ... and finding L`Arche was only the beginning!!! We needed to understand the journey of faith that is lived out in L`Arche. We can see Jesus alive in L`Arche. The faith-filled people who are L` Arche live in community with the most disadvantaged and vulnerable of our society. They give their hearts and lives.

We have learned so much from the wisdom and faith of Jean Vanier and the L’Arche communities around the world. We are grateful to have come to know L`Arche and our faith has deepened. Now we are believing that we could become a part of a L`Arche community in Adelaide. A group of Christian people have begun to meet in 2013. There is a great need for prayer support so that we can grow together in faith, love and friendship, to learn what the Holy Spirit`s vision might be for an Ade-laide L`Arche, and for God`s help

cont. p.2

Uniting Church in Australia

L’Arche homes were started in the mid 1960s by Canadian theologian Jean Vanier. They are faith-based homes for adults with intellectual disabilities, & today can be found all around the world, & Australia, but not in South Australia. While there are unique reasons why such an ex-pression of community has not yet evolved in our state there have been very encouraging signs in recent times that such a home may eventually become a reality. In recent years there have emerged people with a passion for seeing such community — parents who would like to see their adult children with intellectual disability move into such a home, those who have worked on similar community and faith-based projects in our state, one who has worked in an over-seas L’Arche home, another who offers fellowship & faith-based support to families that include children with intellec-tual disability through a L’Arche-based support group called Faith & Light, & disability advocates. A f t e r many discus-sions in recent years a meeting was arranged for January this year for anyone who would like to meet together for discussion, ref lect ion & prayer around the vision of planning for such a home in Adelaide. I expected about 7-8 to attend. Fifteen people gathered for lunch, sharing their hopes & dreams, & for prayer. This number included 3 fami-lies who have adult children who they would like to see move into such a house. This response was cause for much rejoicing. Since then there have been further meetings, with fellowship, reflection on important L’Arche / Vanier themes such as community, & some practical discussions around what needs to be done to make such a house happen some time in the next few years. A seed of hope has been planted, & we pray that the seed will grow and bear much fruit. If you know someone who feels they could commit to sharing in this vision invite them to contact me (editor), ei-ther by the email on the front page, or at 0403 711 653.

__________

For a sample of Vanier’s views on community ,& related topics, go to: http://www.youtube.com/watch?v=LrPjteRtmnI

and provision. We are in a place of dependence, and we can see God at work. My husband and I pray every night for a L`Arche community in Adelaide where our daughter can live with others who care and love as an expression of their faith in Jesus Christ. Where the gifts of all its members are shared and acknowledged and each person`s presence is greatly valued. Adelaide needs the shining light of L`Arche ... may it be so! Norelle Pearce (c/- Andrew & Kelly) Editor’s note: Even though Norelle, Andrew & Kelly live near Melbourne, Vic., they attend L’Arche meetings in Adelaide when possible.

Jean Vanier , with a young friend

from p.1

A L’Arche home

Kelly, Andrew & Norelle Pearce

Disability Resource Website

www.presbyterysynod.sa.uca.org.au/disability-ministry

This UCA site offers disability resources such

as back copies of Disability News newsletters, kid’s

books, reviews, relevant media / disability issues,

pastoral care information, liturgy, prayers, poems

and stories.

For congregational & personal use.

Pastoral theologian, and former mental health nurse, John Swinton tells the true story of an elderly lady with dementia who paces the corridor of her nursing home anxiously repeating the one word “God” over and over again. No one knew what to do until one day a nurse walks the corridors with her and then, with great insight, says “Are you afraid you will forget God?” “Yes, Yes,” she replied emphatically. To which the nurse replied, “You know, even if you should forget God, He will never forget you...” The lady immediately became more peaceful, and her anxious pacing of the corridors ceased. This story is at the heart of this profoundly important pas-toral volume, and it persuasively addresses the issue of who, and whose, we are when we forget God. When our deteriorating cognitive function leads us to no longer know who we are, we still, in God’s eyes, maintain our full personhood and God-given identity. Theologically, our identity, our hope, does not stand or fall on our cognitive capacity, but to us being held uncondition-ally in God’s memory. If our identity did depend on our cognition then the ravaging effects of dementia would lead the person concerned to be regarded as a non-person. The author extends the notion of ‘being held in the mem-ory’ to the communal responsibility of the congregation to hold those of their community of faith in their collective memory by detailing the life stories of those from their midst who acquire dementia. Not only is this book an invaluable resource for those who care for those with dementia, but it also serves as an utterly reassuring reminder to all of us, that no matter who we are, or what we do, nothing can prevent us from being held in God’s memory.

“Our hope lies in the fact that we are

living in the memories of God.”

John Swinton “Dementia: Living in the Memories of God,” p.197

Dementia

LIVING IN THE MEMORIES OF GOD

by John Swinton William B. Eerdmans Publishing Co. available through Amazon: $16.50

“Public Display of Autism”

a poem by Tina Moreland

If he falls to the floor, kicking and screaming,

because there’s no chicken nuggets, it’s just his

way of coping. Be patient, you’ll get your turn to

order.

If she bumps her head and starts to hit herself in

the face, don’t stare, it’s her frustration.

Mom will handle it, she sees it everyday.

If Dad is cutting his child’s food, he’s not treating

him like a baby. He just doesn’t want his son to

choke.

If she ignores your child on the playground, she’s

not a brat. She’s just not good at social interac-

tion. She would love to play with your child,

she just doesn’t know how.

He may be too big to sit in the shopping cart.

No, he’s not lazy. He wants to run around,

but his Mom needs to shop. She’s not up for

chasing him today.

If she has to be carried out screaming it’s proba-

bly because of a meltdown. Be helpful, open the

door. Don’t just stare or whisper. No, it’s not

because she didn’t get the toy she wanted.

If it were only that simple.

Don’t talk to her like a child, unless she is one.

Don’t yell, she’s not deaf. She may not talk,

but she can understand.

No, it’s not bad parenting. Discipline won’t help.

This is autism, it’s his life. Don’t judge him,

he’s not judging you.

Hudson

HATES

School

Hudson is good at a lot of things, but

spelling isn't one of them. In fact,

having to do spelling tests is one of

the many things he HATES about

school. After another horrible day

Hudson declares he will never go back

to school. But one final very different

test helps Hudson understand why he

is special... and how he can learn to

learn!

Little Trisha, overjoyed at the thought

of learning how to read, struggles when

she finds that all the letters and num-

bers get jumbled up. Her classmates

make matters worse by calling her

dummy. Finally, in fifth grade, she is

lucky enough to have a teacher who

recognizes Trisha's incredible artistic

ability — and understands her problem,

and takes the time to lead her to the

magic of reading.

Twenty Years: Twenty Stories

celebrating 20 years of the

Disability Discrimination Act

http://www.humanrights.gov.au/twentystories/index.html

Twenty years ago life for millions of Australians got easier. The then Deputy Prime Minister in the Keating government, Brian Howe, introduced an Act that would, for the first time at a national level, make it unlawful for people with disabilities to be discriminated against. The genesis of change was the Disability Discrimination Act (1992) , which commenced operation on March 1st, 1993. Sponsored by the Australian Human Rights Commission Twenty Years: Twenty Stories marks the Disability Discrimination Act’s twentieth anniversary with twenty inspiring and instructive stories about the lives of people with disabilities, on film. The short stories captured on film vary greatly. You can see a film that looks at a family struggling with the issue of mental illness. There are stories of people with disabilities striving for access on transport, something that most of us take for granted. There’s the story of a deaf athlete striving to compete against able-body athletes, an issue that would seem to be all but invisible to most of us. Each film creates for us an ever clearer picture of the lives of those around us who live with their disabilities, and its effects, each and every day of their lives. They also give insight into the types of issues faced by the carers of people with disabilities. The films can all be viewed, along with transcripts and audio, at the website at the top of this article. The anniversary of the DDA was recognised at a function on April 10 at the Hawke building, Uni SA, Adelaide West. Human Rights Commis-sioner, Graham Innes, and others spoke, Hot Tutti entertained, and four of the films were viewed.

A Prayer seeking genuine welcome

As we seek to have open hearts, open minds and open doors…

Help us to move beyond opening the door to welcome only those

who can climb the steps to enter.

Help us to move beyond opening our hearts to love only those who

look like us.

Help us to move beyond opening our minds to accept only those

who think like us.

And help us to create an environment, in our church and in our

community, where all are welcome.

In your name we pray. Amen

adapted from Rev. Dr. Thomas W. Binford, III

www.inumc.org/pages/detail/1087

by Ella Hudson

Publisher: Frances

Lincoln Children’s

Books, 2011 Booktopia: $11.70

about dyslexia

by Patricia Polacco

Publisher: Philomel, 1998

Amazon: $9.46