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by Nick Wilkie
As I sit down to discuss disability culture and pride, it is important to say that we all make very personal choices about what we identify with. We may see ourselves as part of a particular group of friends, or as belonging to a club or organization, or as part of a certain neighborhood or family or religious community. We might enjoy activities that our friends enjoy and identify with that group of people and that activity. But out of all the positive things we identify with, for youth with disabilities their diagnosis typically is not one of them.
In the next few paragraphs I will address this concern and the premise that taking pride in yourself and your disability can contribute to a better outlook and understanding of disability and disability culture. Further, by participating within the disability community with other people with disabilities and disability organizations, young people can be a part of the collective community, contributing to and belonging to something larger than themselves.
As a Transition Specialist at the Metropolitan Center for Independent Living (MCIL), I asked some of my colleagues, as well as youth consumers, their thoughts on getting connected with disability culture and disability pride through participation in organizations like MCIL. I wanted their thoughts about how it can contribute to social belonging in the community for youth and young adults with disabilities. One of the questions I asked was, "If you could paint a picture of social belonging for youth with disabilities, what would that look like?" My MCIL colleague, Amanda Bennett, shared the following thoughts:
I still see a lot of social segregation. In high school, I was friends with lots of students in the special education program. Every day their teachers would have them sit together at the back table, and this table earned a nasty label. There are many programs that try to combat this by pairing people with and without disabilities together. It still doesn't seem quite right because the individual with a disability is often talked down upon or the person is involved just for community service hours. In my experience, I have noticed when I interact with people without disabilities I usually have to be the one to make the first move. So my picture depicts a time people will be educated enough to realize we all have something valuable to share with one another and people won't hesitate to find out what that is.
Amanda also talked about the first time she experienced or felt disability pride:
[It was] when I started interning here in August 2010! I read about the independent living [IL] movement in my graduate program, but it didn't really sink-in until I was around people who were passionate about the IL philosophy. Growing up, I did everything in my power to make my disability less obvious. I used to see my disability as a roadblock to achieving my goals. MCIL staff have taught me my disability is an asset to this organization because it allows me to relate to and more effectively assist consumers. Corbett Laubignat, MCIL's Peer Mentoring Coordinator, phrased this in a way I particularly like: "Your disability is like a superpower when your experiences help others." Well, then, here I come to save the day!!
The foundation of Centers for Independent Living (CILs) is the pride that people with disabilities have. We want to see consumers do everything they wish to do. As long as individuals (youth especially) have goals and seek to find their voice, CILs with be there to assist them. We seek to be a vital part of the community and have since our inception in Berkeley, California, in 1972. Amanda explains more when she writes, "I think CILs have a huge impact on disability pride and culture. They foster the growth of disability pride by emphasizing that discrimination is rooted in the environment and society as a whole, rather than a deficit in individuals." Another of my colleagues, Ann Roscoe, the Independent Living Manager at MCIL, notes that CILs contribute to pride and disability culture by providing time and space for people with disabilities to participate in social and educational activities.
It is within environments like ours where pride can be grown and harnessed. Youth, specifically, can discover community here. Many of our classes can be applied to self-discovery. It is not about what individuals "can't do." It's about what they can do with the appropriate mind-set and the right accommodations if they are needed. Through this, success and independence can be achieved. If young people embrace these ideas they can change their feelings about themselves, and in doing so, possibly overcome the stigma that they impose on themselves.
For many high school students and other young adults, learning to address their challenges is one of the largest things that they accomplish while involved with us. One student told me, "I have learned to be more comfortable with my challenges [while attending classes] at MCIL." For some, the only time they address these issues related to disability is when they come in to see us. By learning in this environment they can disclose and discuss their challenges with staff and peers. This allows them to contrast/compare their experiences with others. Difficult as it can be, this approach assists individuals come to terms with their situation and takes them away from the avenues of denial. Sometimes denial can be self-imposed and other times it is brought on by families and support staff that do not truly understand the young person's diagnosis.
Youth with disabilities need to feel included and part of something. They also need to continue to advocate for themselves and their community. And they need to redefine what their diagnosis means to them and help shape that true meaning for other people. And one way they can do that is through experiencing the disability culture and disability pride – as well as the social connections – that are found in Centers for Independent Living. As our MCIL director David Hancox has observed:
As described by Ed Roberts, considered the father of the independent living movement, IL is about how people with disabilities think of themselves. He asserted that a positive self-awareness about one's disability can make you very powerful. Being proud of one's uniqueness, one's personal qualities – no matter what they may be – is extremely liberating, and that can be very powerful. And, being able to identify oneself as part of a larger group such as the disability culture – which is a rich, vibrant and complex culture – can reinforce that sense of pride and belonging.
When asked what a picture of social belonging for youth with disabilities would look like, Ann Roscoe summarized, "Really integrated, people from various ethnic backgrounds and people with all kinds of abilities." And CILs are one place where youth with disabilities can help create that picture of social belonging for themselves and share it with others as part of disability culture and pride.
Nick Wilkie is Transition Specialist with the Metropolitan Center for Independent Living, St. Paul, Minnesota. He may be reached at 651/603-2018 (phone/fax or email@example.com). For more information visit MCIL's Web site at http://mcil-mn.org/. To learn more about Centers for Independent Living, visit the National Council on Independent Living Web site at http://www.ncil.org, which also has links to CILs around the country.
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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/241). Citation: Palmer, S., Heyne, L., Montie, J., Abery, B., & Gaylord, V. (Eds.). (Spring/Summer 2011). Impact: Feature Issue on Supporting the Social Well-Being of Children and Youth with Disabilities, 24(1). [Minneapolis: University of Minnesota, Institute on Community Integration].
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/241/241.pdf.
The University of Minnesota is an equal opportunity educator and employer.