Jan 24, 2008

Response to "Necessities"


Once again, Amanda has managed to capture so many of my past thoughts and write them down in a convincing, comprehensive way.

Over the years, I have been accused of exaggerating my symptoms, malingering, making excuses, etc. (As it turned out in the end, it was rather the obvious. I understated my symptoms, worked harder than was healthy, and made excuses for why I just had to destroy myself. ) I believe one of the reasons this is true is my generally cheerful disposition. People don't expect a chronically ill person to look happy or content. Instead, we're supposed to be dour and depressing to be around. Those who don't summarily decide a happy chronically ill person is faking are just as bad, because they decide that "brave smile" is "inspirational".

Happiness is no crime. Enjoying zooming around in my wheelchair isn't unnatural, a sign of faking, or inspirational. Its natural to feel good about traveling quickly and smoothly. Enjoying life is nothing but a good thing, and its a sad thing so many people have to step in and try and dampen that.

Jan 16, 2008

People are people first

Ryn asks, "What should professionals know about disability?" (In my answer, I am discussing mostly medical professionals and others who have PWDs as a major part of their work load.)

They should know that disability is just a facet of a person, and makes the person who has it no less of a person. They see so many of us, you think this would become obvious that we are each an individual. It seems a given they would notice that we have a range of other characteristics and experiences that, combined with our impairments, make up our life as a whole.

And yet, in my experience this isn't generally the case. I've gotten to meet a number of new acquaintances and spend time with old friends in these last three years. The wheelchair throws them off their game, with few exceptions, but most pull through to be normal by the end of the conversation. They minority still can't look at me straight at the end, struggles with what to say, feels akward, projects akward, patronizes, remarks on everything I do as a miracle, or ignores my participation in the conversation entirely. Sadly, most of the latter group is comprised of doctors, nurses, "disability advocates" and others that should be the ones to know better.

Instead, they've been taught in their professional lives to think of us as patients, service users, or worse, people they have authority over in some way. Sometimes they get stuck thinking of us as something to be fixed, and not someone to become acquainted with. Too many times, they can't break the mold outside work, and to talk to most of them at work is an exercise in frustration.

What about other professionals?

Too many assume us to be incompetent, and too few take no time to find out what we can do and how we want to do it. If they only knew that communication is the best customer service, I think we'd do fine.

I would like to take the time to praise on profession: flight attendants. Flight attendants are some of the best trained professionals I've ever dealt with as a disabled person. They're attentive, but they stay out of your way. When you do ask for help, most immediately ask back "How can I best help you?"