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What does it mean to be a member of the Disability Community?
Before the rise of the Disability Rights movement, many people with disabilities were isolated from each other or stuck in disability-specific silos that really did not afford them the opportunity to be exposed to people with other disabilities and their experiences. As the movement began and evolved, there was a greater sense of the need to come together as a people, to combine our voices and our efforts as a group, as a community.
As Disability Policy emerged and developed through the 1980s and 1990s, it appeared as though the new cadre of leaders were developing something more than a philosophy based on the needs of their specific disability, but rather a more collective push towards solidarity and a unified movement for ALL people with disabilities. In No Pity, Joseph Shapiro described it as a “hidden army” of people who have an instinctive understanding of the stigma of being disabled. Either they had a disability themselves, or someone in their family had one. The ranks of this army were vast, given that more than one in seven Americans had a disability that would be covered under the ADA.” (Shapiro, 1993)
Having a disability automatically makes you a member of the disability community. Whether you choose to embrace that as part of who you are, is what determines if you are an active member or not. It means that you recognize your disability and celebrate it as one part of who you are. In doing so, you are then able to find commonalities with others of similar experiences and backgrounds and similar and different disabilities. Because people are not always born with their disabilities, it is possible to become a member of the disability community during any part of your life.
Being a member of the Disability Community does not mean that you always have to get along with or like other people with disabilities. It does not mean that you can’t disagree, in fact, what it does mean is that you have a shared respect for each other’s experiences and feelings which as a result, allows you to further develop yourself.
What is Disability History?
Whether it’s the community you live in, a church community, an ethnic community, or the community you live with in your home, all communities have histories. These communities are bound by the people, places, and events that shaped them and made them what they are. The Disability Community is no different. Disability History is made up of people, places, things, and events that had an impact on people with disabilities. Some examples of disability history that people know about are the Eugenics movement, Christopher Reeve’s outreach work, Marlee Matalin winning an Oscar for “Children of a Lesser God.” These are all events in Disability History, but are probably well-known because they were remarkable events in history in general. On the other hand, examples of disability history that people (much less young people with disabilities) rarely hear about include the Deaf President Now shutdown of Galludet University, the burning of Paul Longmore’s book, or the protest and shutdown of the HEW building in San Francisco. Yet these events are critical to Disability Rights movement and the development of its future leaders.
Exposure to disability history gives young people with disabilities a sense of where we’ve been and where we need to go. Being aware of and understanding the people and events that are responsible for or contributed to our entitlement to a “free and appropriate public education” or the development of “self-determination” are only two examples of achievements made by people with disabilities for people with disabilities. They give us as a people, a context for developing and feeling a sense of pride in ourselves and our disabilities.
What is Disability Culture?
As a result of the disability rights movement and disability history bringing people with disabilities together, it also led to the development of a culture. The feeling of sharing a common experience is the initial sign of something more than just coincidences and experiences, but a deeper level of kinship. Any time people with disabilities come together, whether in hospitals, schools, camps, protests, workshops, or at conferences,
“People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.” (Institute on Disability Culture, 2001.)
Disability culture emerged as a result of the oppression we, as people with disabilities, face on political, social, economic, and cultural levels. It’s kind of like the Force described in the Star Wars movies; something that binds us, penetrates us, and allows us to celebrate who we are.
The functions of a disability culture (Gill, 1995)
- Fortification: definition and expression of our value as a community that gives us energy and endurance against oppression
- Unification: The expression of our beliefs and heritage in cultural activities brings us together, gives us support, and underscores our common values
- Communication: Our developing art, language, symbols, and rituals help us describe to the world ands to each other who we are as a people
- Recruitment: The expression of our culture is a positive thing and encourages people with disabilities to “come out” and join the community, integrating their disabilities into their own identities, and making them feel like they belong.
Why are these important for youth with disabilities?
One of the key benefits of participation in youth organizations for young people as noted by Scales and Leffert (1999) is the opportunity for identity development. Finding a safe and healthy environment to belong, grow, and stretch one’s boundaries is important for all young people as a piece of youth development. It can be even more powerful if this place has people who have common experiences and can relate to each other on important levels. This kind of environment is extremely beneficial for YwD who are often not aware of the disability community and lack familiarity with “disability culture.” Disability is often perceived by society as a negative thing, something that sets certain people aside as “abnormal” or “different” and this stigma is very hard to cope with, especially if someone does not have positive examples of people with disabilities in their lives already.
By incorporating the notion of a disability culture and connecting youth with disabilities with the disability community, there is the unique ability to affect young people at the point in their lives when they are likely feeling the most insecure and isolated because of their disabilities--adolescence. This will in turn promote a sense of togetherness, a sense of a shared experience of turning oppression and discrimination into empowerment rather than follow the path of previous generations in our movement that remain divided over issues, retreating in disability-specific silos of isolation and inability to see the bigger picture, a united movement.
Exposure to Disability Culture and the Disability Community affords young people with disabilities an opportunity to gain peer support that is rarely offered in mainstream leadership development opportunities; a chance to engage in dialogue and activities with other young people with disabilities.
How can I learn more?
Gill, Carol., (1995) A Psychological View of Disability Culture, Disability Studies Quarterly
http://www.independentliving.org/docs3/gill1995.html
The Institute on Disability Culture
http://www.dimenet.com/disculture/
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