this has been a discussion that I have had many times in the university and in the work environment.
Accommodation is really what I have heard individuals struggle with. Invisible disability/disabilities is a challenge for those who live with them and for those who are not sure how to accommodate or include these individuals.
I appear to have (on most days) invisible disabilities. However, on a bad pain day (one of my challenges is physical), it becomes very obvious that I have a hard time walking and lifting things. I also have serious environmental, food and other allergies--these although invisible can kill me in minutes if I am not aware of my environment and diet all the time and make others aware. this alone has caused an air of exclusion to rise up when those planning events do not want to exclude certain food (such as peanuts) or inform guests not to smoke (not such a problem now) or not to wear perfume (when asked I find people still ignore or do not understand this. Several injuries and incidences (and genetics and health conditions) that have lead to disability are complex and the stories are not ones I want to share with everyone. Sometimes people are not satisfied with the label of the disability, they want to know how it came about or how it effects the person. Knowing something or one level when required (for say accommodation) does not give anyone who is not a friend the leverage to ask for more information. Technically, a doctors note is all that is "required". Personally. I am all about educating whenever possible, but have experience serious discrimination when I have been open about my experiences.
Further, for those with disabilities that are "visible" it is not required by you to state anything other than your required accommodation (for example why you are in a wheelchair or use a walker or if you were born without vision or hearing or if you have had an injury or disease that resulted in your present disability. It is your choice.
the question about when something becomes a disability rather than a condition is convoluted and perhaps set up mostly for funding agencies and doctors. BUT I believe it changes from one definition to the other when-- first the individual acknowledges it, and-- second when that condition has presented itself for long enough that one would recognize that the situation is not going to change and the "condition" is affecting the persons ability to interact in their life (job, school, home, friendships) and is likely to be permanent. All these things are so very complex and personal. A person who is born without vision has a different sense of the situation than a person who has a degenerative disease that will lead to blindness. the moment when the condition or health issue changes from health problem. disease, injury to disability is indeed a difficult moment to define.
earlier someone asked why deaf was separate from disability--the reasons for this as I understand them are that in our society, most persons who are deaf (not necessarily hearing impaired) do not consider themselves disabled (that is a label from outside). they are a unique society with their own languages. However, in moments when it is important to join with other groups, to fight for specific and universal access rights, many individuals who are deaf join with the larger disability community.
so there are my thoughts on it (well a couple of them anyway). I know that a discussion like this is fraught with toes that can be stepped upon. It is not my intention and I do hope not the intention of anyone in for an open dialogue. We as a group of individuals who face daily struggles trying to adapt to an environment that does not keep us in mind as it builds...we must challenge it and do so together (in specific and in diverse groups). this world only makes change when it is nudge and often kicked into doing so.
Monday, October 13, 2008
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