I’m a passionate advocate for community-based care and living that allows people with disabilities to stay in their communities, among people they know and love, rather than being forced into institutions. This can take a number of forms, from someone living independently in a private home to supported living in a group home for people who need, or want, more assistance and company. Creating a viable and effective system for community-based care should, in my opinion, be a priority, at the same time we make safe institutional services available for those who want them (and yes, some people with disabilities do want to live in residential facilities).
One of the key problems with supporting community-based care comes up in the type of support offered. People may be able to access a place to live, assistance with food and hygiene, medical appointments, and other basic needs. What they don’t have is support in their communities, which effectively devalues their lives, reducing people with disabilities to objects that need to be fed, watered, and turned, but not given a fully enriched, loving, and dynamic environment. We are not plants, but some government agencies certainly treat us like it.
Community-based living is hard when your community is inaccessible, or you don’t have enough aides to help out; if you want to volunteer at a community organisation, for a while, you may be rejected, may find it inaccessible, or may not be able to get an aide to accompany you. You may encounter so much resistance that it’s just not worth it to you, even if you feel passionately about the cause. If you want to hang out at the local coffee house with friends, it may be such a hassle to find seating and confirm that food and drinks are safe for allergies that you just don’t bother. You may have trouble getting into public events, using public resources, and actually being out and about in your community.
In other words, you live in the community, but you are not a community member.
So you stay at home, effectively trapped by social attitudes. Maybe you watch television or develop rich friendships online, read books and write and do other things you can do in your home. Your life isn’t worthless and it isn’t without value, but it’s not necessarily the life you want to lead, or the life you deserve. Yet, on the surface, your life is meeting the standard for ‘community-based living.’ You’re not in an institution, after all, and you’re living independently or interdependently with assistance, so the government can count you as a positive statistic and move on.
Nondisabled people looking at our lives from the outside often say that it would be so terrible to be disabled, that life wouldn’t be worth living. These kinds of attitudes are especially apparent in debates over assisted suicide, where the assumption is that of course people are so miserable that they’d want to die rather than go on living. Less attention is paid to the context, though, of what makes a life worth living; do people want to die because they are disabled, or because society is inaccessible and they aren’t living the lives they want to live?
Society collectively makes our lives valueless by isolating us and placing us in positions where we are reminded that our lives are lesser. The problem with, for example, someone with paraplegia being unable to leave the house except for very specific occasions does not lie with the paraplegia. It lies with the community the person lives in, making it hard for the person to use a wheelchair for mobility and engage in activities; disability doesn’t stop you from going to the beach, say, or driving carriage horses, or flying a kite. The infrastructure is what stops you.
People putting energy and investment into saying that our lives aren’t worth living are missing the point; our lives are worth living and they do have value. What we need is support from our communities to help us live to the fullest; the same support nondisabled people take advantage of without thinking about it. The stairs for people who find that a comfortable method of entering buildings, menus provided in print for people who read, movie theatres with raked seating so people can catch a show. Nondisabled people are living in a world tailored to them without being aware of it; they think their lives are worth more than ours because of the disability divide, when really it’s a social and infrastructure divide.
Many of the accommodations that would allow us to engage more fully in our communities would have little to no impact on nondisabled people. Ramping buildings, for example, makes them easy to access for most visitors; it doesn’t make them impossible to get into for nondisabled people. Making sure beach paths are accessible for wheelchair doesn’t mean nondisabled people can’t use the same path, but it does mean that disabled surfers will have an easier time hitting the waves when they want to. Offering Braille menus or having a waiter orally go over the offerings expands the possibilities, rather than narrowing them.
With all this effort expended on reminding us how worthless our lives are, people could be making a real different in our lives by building communities that support and welcome us. Community-based living and care could truly be community based, fully integrated, an opportunity for us to live, work, and have fun among the people we share the world with. Every time I see someone making an argument that our lives are valueless and tragic, I see a person falling for a fallacy, mistaking the disability for the problem instead of the society.