I have a really cool job. I connect adults with all kinds of developmental/intellectual/cognitive disability labels to the resources and happenings in our community. The organization I work for has a strong mandate for inclusion – we reject segregation of people with disabilities as oppression. When I look for events I am specifically mandated to think beyond “swimming” and “gym” and “library” — would a schedule of events like that interest you? Some of the more exciting options I’ve explored lately include pride groups, medieval banquets, bike collectives, belly dancing, and a marijuana activist group, just to name a few.
I’m challenged daily to think outside of the box and actually explore the stereotypes that exist around the demographic I work for. I thought I ‘believed’ in inclusion before I started this job, but now that belief is a full-on life paradigm. Now, I just see a bunch of really cool people who deserve to be treated as individuals — not forced into segregated, stereotyped, simulacra lives.
You can volunteer, and they call it a job, but it’s not really a job. You have a friend — but not really a friend. They are motivated in some false way to be in your life. And you have a house, but not really a home. Not your home, anyhow.
The CEO of the Alberta Association of Community Living speaks as a strong voice for inclusion of people with developmental disabilities, and I heard him speak on how we often create a kind of a parallel universe for people with disabilities. You can volunteer, and then you have a job, but it’s not really a job. You have a friend — but not really a friend. They are motivated in some false way to be in your life. And you have a house, but not really a home. Not your home, anyhow.
Really, the shift away from mandatory institutionalization began not that long ago. There are still a number of institutions in Canada and the US today, but we’ve evolved into developing group homes. I always imagine living in a group home to be like living forever with a roommate you didn’t choose on the world’s smallest budget and while little to no control over most of the things you do on a daily basis. People’s daily lives easily become run by schedules and compromises. It’s what happens when bureaucracy takes over day-to-day life.
Families who are anti-segregation or who can’t afford the added cost of contributing to an extra household often have adults with disabilities still living at home. The only weird thing about that is that it makes it just that much harder to transition to adulthood — what parent doesn’t have a hard time letting go of their kids so they can make their own choices? Not living at home is vital to some of that coming-coming-of-age we all do.
The latest shift seems to be adults with disabilities living individually in the home of a family or individual who provides some or all of support that person needs. It’s still pretty new here, so I can’t really speak to the potential, although I do have some pauses about it. There is still huge potential for abuse and power-over situations, but at least there is usually some attempt for the person to have their own space and live as independently as possible.
I’ve heard of organizations that have spaces donated, or fundraised, for this purpose so rent and mortgage aren’t barriers and the person can continue living in the space – THEIR space – as long as they like. This model seems like it would have some power, but there is still a need for good training and philosophy behind it.
I would love to be able to give that opportunity to someone — what if the long-time tenant who rented the other side of your duplex lived independently and received assistance on her terms? If you two are friendly, you might still catch up in the front yard, and laugh about how messy your houses are, and Facebook each other. You’d want her to have the option to make her own friends and pursue her interests.
How are homes different when they’re offbeat because they help residents live more normally?
So many of our homes are offbeat because we’ve got a different lifestyle; we are burners hosting hula hoop parties all year long or we are strict locavores or we made a kawaii bathroom. How are homes different when they’re offbeat because they help residents live more normally? People with impaired eyesight equip their homes with different clocks, braille knobs and other accouterments. People with wheelchairs install chair lifts. Some people have a home nurse visit. The people in our lives who, in the past, may have lived in sterile, clinical housing are now more and more acknowledged as having a right to truly make a home. What does an offbeat home for a person with developmental/intellectual/cognitive disability labels look like?