Thursday, June 18, 2009

Blogging Against Disablism Day

I have both a congenital sensory impairment (legal blindness) and a chronic illness (fibromyalgia and CFS/ME/CFIDS).
Frequently, both communities are grouped together since both things can be considered 'disabilities' however, their needs and concerns are different. I'm honestly not sure how effective this is and I'm not sure how well each group can understand the other.
Honestly, it is in the best interest of those with congenital and acquired physical/sensory impairments to promote the image that they can do almost anything with the right, usually minor, adjustment. (Such as a ramp, reader, etc.) The emphasis is on how basically capable this group is as a whole and that's how it should be.
I realize that physical/sensory disability can be associated with chronic health problems. Many people with spinal cord injuries have chronic pain for example. Plus, health problems can lead to disability.
Chronic Illness seems so different. Yes, it may require similar use of aids & appliances and the need for personal care attendants. However, I'm not sure how well the two fit together.
Personally, once I learned 'how to be blind' I pretty much had it figured out. I got the 'blindness skill toolbox' if you will and was able to go on with my life. If an obstacle came up, I usually even had an idea of what would help eliminate it. The support I needed was mostly about society and how to change it.
Then my fibromyaliga and CFS/ME/CFIDS kicked into full gear. Things became unpredicitable. Yes, I needed to learn a new set of tools but that box will never be static. My enemy is now multifold: my body, society, my doctor, and minute aspects of the environment around me.
One example is attendant care. A person with a disability may need attendant care to be able to go out into the community. They are frequently housebound without attendant care but once they have appropriate attendant care many things become possible including working. For a person with a chronic illness, attendant care won't necessarily enable someone to go out into the community or any other quality of life enhancement. Sometimes all it will do is help slow the rate of degeneration.

As for public appearances, I'm pretty sure that when I get out of my snazzy red wheelchair and take a few steps to my seat I'm doing a dis-service to another young person because it spreads the idea that maybe the next person who comes by will be able to do the same thing. Or when I use my chair on Monday but not on Thursday someone will get the idea that I was 'cured.' Should I not do what I can because it may somehow harm the public image of other people with disabilities?
I am usually pushed by Mr. Wacky. If I'm sick enough to need to be in my chair, I'm not well enough to push myself long distances. However, I doubt many people without a chronic illness would want to be pushed.
People with static disabilities want to present themselves as basically functional and competent.
People with chronic illnesses seem to want and need different things depending on the nature of their exact illness. Overall, they seem to want to be believed to be truly physically sick and to be believed about their current level of ability at that moment. Instead of struggling to be seen as more capable than they appear, the struggle actually seems to be the opposite.
While there is strength in numbers and collations are very effective in matters of civil rights, I'm just not sure that grouping disability with chronic illness is the most effective thing for both groups long term.

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