“Why does Fredericton need a L’Arche community?”, asked Margaret and Rodney Savidge in a recent Brunswick News commentary.
A L’Arche community in Fredericton is necessary not only for those young adults and older/senior adults with intellectual disability who need care and compassion but also for those in the ‘mainstream’ living and working in the community which they share.
In the words of Jean Vanier, Founder of L’Arche, “the story of L'Arche begins with a huge gap of injustice and pain. It is the gap between the so-called ''normal'' world and the people who have been pushed aside, put into institutions, excluded from our societies because they are weak and vulnerable. This gap is place of invitation in which we call people to respond.”
A L’Arche community fills the gap not just with a place, a home for adults with intellectual disabilities — but also it fills the gap that many among us have in our own lives. The gap of feeling and being needed, of feeling useful; of doing our part to make the community in which we live work for everyone, especially for the ‘least among us’. Bridging the gap between those who ‘can’ and those who ‘can with proper supports’ benefits everyone, and I do mean everyone. Persons with challenges are too often seen as a burden to all of us tax paying citizens by those who just don’t know. I find it offensive. Not only that, it’s wrong thinking and has no place when speaking of the needs of persons with challenges to daily living. You or you or you could become, in a single instant, a ‘person living with challenges to daily living’. You’re not special in that regard. Are you lucky? Maybe! You could become the parent of a child who will require lifelong supports and once adult that means accomodations with regard to where he will live. Staying in the family home from cradle to grave isn’t always a realistic option.
“It’s a dream for me to live in the community,” declared 36 year old Garrett Sinclair, when recently interviewed by Brunswick News. Mr. Sinclair lives with intellectual disabilities that make realising his dream a bit more difficult than typical for a person his age. He’s gone a few decades beyond an age when young people venture out on their own, away from hearth and home and the daily Mom and Dad support. Garrett relies upon limited supports from others to ensure his independent living goes smoothly and he is safe on a daily basis. The ‘system’ has a duty to ensure that all the Garretts in our province have safe and secure lives when parental supports are no longer available or not as available as they had been for year after year after year. Parents of adults with disablity are ‘aging out’ of their ability to meet the daily challenges caring for their child requires along with maintaining their own health and wellness as they enter their senior years. They feel guilty that they just can’t do it anymore. They must not feel guilty nor made to feel guilty. What they need is help! Not in a year, two years, five years. They and their adult children with disability need help NOW!
Imagine being 70-80 year old woman of 120 pounds caring for a profoundly involved son with the mind of a toddler who weighs 240 pounds and unable to walk. Imagine you are his primary caregiver with limited in home visits from familial help or government-subsidised help. What’s going through your mind right now? Panic? Imagine living with the daily dread of wondering what happens when you can’t do it anymore. What happens to your son or daughter, brother or sister?
When Garrett was 22, just 16 years ago, his mother related that someone from Social Services suggested he living in a nursing home! That, my friend, is an attitude that should have gone the way of the dinosaur back in 1981, the International Year of Disabled Persons (as it was called). Actually, it’s an attitude that should have burned away decades before.
Remember that fellow, Franklin Delano Roosevelt? He led a country in the midst of war while coping with his own wars. The wars raging within his body ravaged by polio which cost him the use of his legs and left him with life-long pain. He hid his disability from public view as best he could but documentaries and docu-dramas about his life gave us a glimpse. In his position, a disability would have raised questions. Being ‘less’ physically able didn’t make him unable. The same is true today for those of us who live with challenges to daily living and full inclusion.
What Garrett wants and what his family wants for him is not unreasonable. He’s a young man who wants to go to work, participate in things to entertain himself, have his own place with the stuff of his life around him. What person his age doesn’t want that?
This is why Fredericton needs a L’Arche community.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.
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