I subscribe to a half dozen disability list-servs. I hear the voices of our disability community the news, complaints, conjectures, dreams, and exhortations. I love the sense of connection, but I dread the complaints, the fault finding, the reproaches, the "aint it awfuls." It grates. I have a hard time hearing my brothers and sisters complain. Why is that?
Often the complaints center on a lack of fairness, although rarely is the word "fair" used. It is implicit in the complaint. "[It isnt fair that] I get treated like a piece of baggage or [It isnt fair that] I was ignored." This implied lack of fairness translates into passivity.
That is what grates on me more than anything the complainers passivity. The complaints are specific about incidents but vague about overall causes and possible solutions. I get scared when I see others or myself cowed by discrimination. I have too often seen that disabled people are vulnerable. Whether we are stuck in a nursing home or denied access to education, we are often left out of the mainstream.
Who is going to change this state of affairs? It has to be us. Disabled people have to gain power and make change. No one is going to hand it to us.
I do not think we can do much about the unfairness of our impairments. I believe the very existence of our impairments is unfair. Our injured spinal cords, lack of vision, missing limbs, learning differences are a rotten thing to have happen. Just like death, they are inevitable and unfair. Can we avoid impairment and death? No. Can we change their inherent unfairness? No.
What can we change? We can change how society treats us because of our impairments. We can redress the lack of rights. We can work to eliminate the stereotyping, the looks, the exclusion, the waste of lives.
So whats my problem? For one thing I am forced to look at my own vulnerability as a disabled person. I stayed in the same job for 22 years. It gave me a feeling of safety along with a group health plan and retirement. But my IRA, retirement, and middle class trappings dont protect me from a too-narrow doorway between my wheelchair and a bathroom. Nor do they insulate me from my impairments medical demands and uncertainties. The doorway can be widened by a carpenter or a building code enforcement. And, my feelings about my medical needs can be dealt with through spirituality and connection.
I became aware of feeling irritated by the repetition of "aint it awful." The irritation continued when I realized that we are not serving our communitys goals. If we are without a political goal, a strategy for changing world, we will continue to suffer.
To be fair for my brothers and sisters, its hard to sort it out. We confuse the travails of our own impairments with the political environment and patterns of discrimination. The personal is political and we need to make the connections between the two. When I am stranded twenty-five rows back on the jetliner waiting forty-five minutes for the aisle chair, ultimately it is less about my full bladder and inconvenience than about the airlines lack of commitment to all its travelers. It is about how disabled people force the airlines to fulfill their commitment to public transportation.
I want society to be structured fairly. I dont expect the devastatingly lack of fairness of my impairment to be redressed by anyone. I expect decent health care and a little ease now and again. Its societyour laws, customs, and norms that will change. I need to remember that we have changed the world in the last thirty years even though it still needs more.
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