Making Disabled Lives Possible
Or: How Advocacy for Independent Living Liberated Disabled People
Image Description: Wheelchair accessible symbol painted onto pavement with striped bars on either side delineating an accessible parking and loading zone.
When I was a disabled youth trying to imagine my future as an adult, I was not aware of the independent living movement. It was much later that I learned the history of independent living, and how people with disabilities before me fought for control over their lives and inclusion in society.
Previous successful advocacy made my life with a disability possible. It opened ideas and built the laws that demanded more accessibility and addressing discrimination. I’ll be forever grateful to the generations of disabled people who demanded ramps, accessible transit, employment opportunities, and all the aspects of a full life that many people without disabilities take for granted. These changes were not given easily nor willingly — decades of work went into laws like the Americans with Disabilities Act, which stemmed from the belief that the disability experience was worsened by societal structures built to exclude disabled people.
What Is Independent Living?
Access Living says it best on their website about the history of independent living:
“This history of the independent living movement stems from the fundamental principle that people with disabilities are entitled to the same civil rights, options, and control over choices in their own lives as people without disabilities.”
This advocacy movement was greatly influenced by other civil rights movements and also the concept of de-medicalization — that disabled people were not merely patients who must obey doctors, but also people living their lives.
“People with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. He posited that such issues as social and attitudinal barriers were the real problems facing people with disabilities. Solutions could be found in changing and “fixing” society, not people with disabilities. Most important, decisions must be made by the individual, not by the medical or rehabilitation professional.”
For me, independent living is about building a society where accessibility and inclusion are part of the central fabric. It also means having access to tools, resources, and services that support my life as a disabled person, such as accessible transportation, assistive devices like my wheelchair, and services that keep me healthy and living in my home (not in a hospital or facility).
What Is Interdependent Living?
One of the struggles in living with a disability is that there is no single place I can go to ask for help solving a problem with access or assistance. Instead, I have to troubleshoot on my own. This has gotten easier with tools like the Internet and social media, so I can possibly find others, seek out advice, or even search for a rare straightforward solution. But it is a fragmented experience.
When I need my local community to address an issue, I have to search for the right government agency, the right person at that agency, and say the right magic words to get their attention. Filling in a pothole on my neighborhood sidewalk isn’t so easy. I sometimes get tempted to do it myself! And this is just one example of a million issues that may crop up over a period of time.
What I would like, what I think we need to aspire to, is a greater sense of interdependent living — not that we have to go out of our way to help others in need, but that we naturally work to solve problems together for the well-being of all (it is not like that pothole isn’t a community-wide issue). For example, in my household we say that my husband reaches things on tall shelves and I work on IT problems. We help each other with the skills we possess.
What Is Next?
I hope the feeling is temporary, but I worry about the fabric of our society. I worry that we don’t want to help others as much (or anymore) and that we forget we are all subject to the ravages of time and experience. Anyone can become disabled, yet we don’t want to build (neither structurally nor attitudinally) our world to be inclusive of this fact.
My hopes would be that accessibility and inclusion be the first, middle, and last item checked off. Whenever we build (remodel) or create anything, we should be asking if it is accessible for all. Then we should check and double check that it actually is. Independent living should not be out of reach for anyone, because exclusion is very expensive to fix.
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