Years ago, when I first started work at Access Living, I had lunch with my new boss. While she ate chicken wings, she gave me some history of the organization, talked about her own experience as a person with a disability, and gave some context to the disability rights movement. What I remember most is what she said about the independent living movement. And it isn't the events, the issues, or the people of the movement that I remember most. It is the perspective through which the parties involved in the independent living movement approached issues and events. The lunch with my new boss was the first time I heard the term 'Independent Living Model' used. The Independent Living Model is a way of approaching challenges to independence faced by people with disabilities. Traditionally, the responsibility for navigating barriers to independence was placed on the disabled person. It was up to the person with a disability to change in order to achieve independence. This way of thinking was called the Medical Model. The Medical Model meant that the disability needs to be treated in order for the individual to navigate barriers and achieve independence.
The Independent Living Model didn't change the barriers faced by people. Whether it's Medical Model or Independent Living Model, the barriers are the same. But the new model changed the way people viewed the barriers. With the Independent Living Model, instead of disability being viewed as something to be fixed, disability is viewed as a natural part of life that can't necessarily be changed and that will impact everyone at some point. With Independent Living, rather than change the individual in order to achieve independence, one must change the physical barrier.
When I first learned about the Independent Living Model, my eyes opened in a dramatic way. The new model gave me a new perspective through which to look at everything that had happened to me as a person with dwarfism, and everything that lay in front of me as a person with dwarfism. I remember trying to bring as little attention as possible to my physical difference in an effort to fit in. Sometimes, if I needed something, some sort of accommodation, I wouldn't ask for it, thinking that an accommodation request would just highlight my differences, and thinking that it was up to me, without an accommodation, to figure things out. Of course, I did have some accommodations. Pedal extenders helped me drive. My parents equipped our house with stools. But whenever possible, I avoided accommodations. The new model taught me that it's perfectly acceptable to ask for accommodations.
More important though than any physical challenge and accommodation, the Independent Living model helped me view social barriers through a more productive filter. All people with dwarfism face social stigma, in so far as we have to deal with situations and with people that are not accepting of physical difference. Today society seems to be embrace differences better than it has in the past, but people with dwarfism continue to face difficult social situations.
In the past, I interpreted the situations as a fact of life. Intolerance comes with the territory I thought. It was up to me to deal with it and fit in as much as possible. The Independent Living Model helped me process those situations differently. Today, I interpret the situations not as my problem, but as a problem that stems from lack of awareness, ignorance and fear of difference. I still have to work hard to make the situation better, but it isn't up to me to change, and to fit in. What I need to do is change attitudes, raise awareness, and empower others to embrace difference.
I still have to face the situations today, and I often get upset when I find myself in a situation where someone else is intolerant of my difference. But in the long run, the situations are much easier to deal with when I identify the problem not as my failure to fit in, but as the other party's failure to embrace diversity.
These days, I am reminded of that original introduction to independent living by all of the initiatives around bullying. Similar to independent living models, which takes the issue outside of the individual and puts the responsibility for change on the community, anti-bullying initiatives put the responsibility for change on the broader community.
Many anti-bullying initiatives developed around the country deal specifically with schools and students, but I think the issue goes outside of schools for all of the marginalized communities the measures are designed to protect. I am excited, because at this year's Little People of America Conference, there is a fair amount of programming geared toward bullying issues. I hope the dwarfism community can use this opportunity to raise more awareness around dwarfism, and perhaps put some tangible tools in place that people of short stature can use to protect themselves from bullying.
As far as I know, there are no specific measures in the United States geared toward little people, though I am sure some existing measures can be applied to dwarfism. But here is a story from England that directly relates to the experience of people with dwarfism. The story is about two people with dwarfism who were harassed in a bar and outside of the bar because of their dwarfism. As a result of the experience, authorities in the town where the incident happened are adopting measures to make night life safer for people with disabilities.
I am sad this happened to the two little people in England. But I am thrilled at the response. In this case, the community is making an effort to change, and to confront bigotry and intolerance. Historically, too many times, bigoted behavior at bars and in other social arenas has resulted, not in a community trying to become better equipped to deal with diversity, but in people with dwarfism shuttering themselves away from an intolerant community. Let's hope other communities follow England's lead.
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