The Illusion of Disability

Sometimes I long for the illusions I had as a child about the world. I was well aware of disability, a man my mother dated had MS, and when he needed it he had a fancy chair. He explained to me the rules about wheelchairs and respecting the boundaries that exist. I was very little, six or so, and he would treat me like an adult. He even let me play with his civil war era Bugle, long before  I was a trumpet player.

I remember the day he seemed frustrated by something I couldn’t understand. He was having trouble getting his medicine. In my line of thinking, if you were sick enough to see a doctor, and he saw the doctor a lot, then you could get your medicine and be on your way. When your body stops working you would go to the doctor and come back home with crutches or a wheelchair and live again. It was that simple.

I wonder if some people never grow out of this stage of illusion. In my world there was no need for money, there was no cost involved in having your needs met. After all, if you cannot live without something then it’s the duty of those around you to help right? This was what the Church taught us and at that point i hadn’t developed my ability to question authority. Do unto others in my mind appears as socialized medicine does. I do hope I am not as naieve about the truths and hardships with those programs as I was about disability.

In those foggy memories I remember him telling me that his body ached. He and I had a connection, and I shared with him a secret that everyone does. I remember the look in his eyes, he looked so sad. He told me that wasn’t true but I said, with the facts I had making me believe this absolutely, “Everyone hurts all the time. I do. I think my mommy does because she always cries when she thinks no one can see.” He pulled me into his lap, which hurt him a lot. He was the first person I had ever met that didn’t like touch as much as me. He seemed normal to me. He still does. Again the illusion that he would not face discrimination. I had yet to see what that was. That wasn’t coming for a few months.

He didn’t speak, he just looked at me. Then he handed me the bugle and told me to play taps. He never asked me to run outside after that. He didn’t protest my sitting in his library with the books. I know what changed now. He knew then that my body wasn’t really “right”. I’ve had that moment with others. My niece, she has the same genetic challenges I do. I wish I could tell her it isn’t normal to hurt. It is for me, and that maybe is an advantage. I have been in pain since birth. This man of shadows and sorrow, he was not born this way. Does Muscular Dystrophy hurt before it develops? Is it genetic? I should look into this but right now I am running on my own shadows and sorrow.

Being unable to go outside because of the damaged chair has left me fighting that sucking sensation called depression. It got worse as my mic died, so my creative outlets with sound went away. I already lost my visual creativity due to my disabilities. Even typing this I feel trapped. I am in a prison. I wonder, was this man in a prison? I remember his hands shaking as he ate. I remember thinking that it must be sad to shake. Now I do. I just wanted to make him happy. I didn’t ever want to cure his illness, as I didn’t understand cure then. I just liked it better when he would smile.

I held my illusion that disability would not be so bad, if I had what I needed, I held it until I could no longer believe this was true. The first time I gave in and asked for assistance with mobility came after a  year of struggle. It came after I nearly died from dehydration and from passing out in the hot hot sun. It lead to my discovery that I  am literally allergic to the sun. I had dropped out of school and I was no longer doing anything. My doctor told me, “I am not sure we can give you a walker, you may stop moving.” It’s the same line. It doesn’t matter the disability, the same line is used to save the insurance people money or to save the doctor paperwork.

Here is a list of costs incurred by my government by not giving me what I needed in the last 365 days. I suspect this list is common more than rare.

Item                                   Average Cost in USD ($)     Quantity

Emergency Room Visits  $500 just to enter               10

Ambulence Rides              $700                                       10

Tests in ER (xrays etc)    $100-900    (visit total)      40 (guestimation, likely higher. Averaged 4 blood tests per visit and 5 xrays per visit.)

Medicine related to ER visit $50-$200                       13 (prescriptions total, not pills. Average pill total was 90.)

Casting, braces, etc             $500                                      2

Food                                        $75                                         1 (One meal in hospital, the administrator complained in person about my dietary needs)

Total: 30875 * quantities over 1 were averaged between the numbers above

I got the numbers off of the bills the insurance rejected, to try and force me to pay. I did not include visits that were not preventable. Those are just the falls. JUST the falls. This means when I had pneumonia, when I had the anthrax infection, when I had allergic reactions I did not count those above. I fall at least once every two hours that I am awake. I also happen to be having to pee every two hours. I stand up, I walk and I fall. Sometimes I fall enroute and on my return trip. (Pun SO not intended).

The cost of the wheelchair I have been prescribed is listed at just under $7000. I am fighting to save the insurance people money. I never dreamed disability was preventable. I was always aware that pain existed and sometimes you needed help with pain. I never cared about that, until I found out that you don’t get the help you need without a screaming fight that lasts as long as you live.

I am tired of being told I will be less mobile because of a wheelchair. I sit as still as I can so I do not fall off of my couch. With a proper chair, I won’t just be able to go outside, or go pee without falling… I can move, I can wiggle, I can fidget. I may even be able to arrange to go swimming. Swimming hurts as bad as bathing but I love it. I can move freely as if my spine wasn’t slowly being severed by my own body. How can I move, dear scientists turned beurocrats if my legs do not get the signals? Have you found a way to repair my spine without KILLING ME? Or At all? Since nerves once severed do not regrow… why don’t you just give in?

Insurance company, preventative care is cheaper. I wouldn’t need the wheelchair in the first place if you had actually approved preventative care. You are costing you money not me. The true financial burden to the citizens who work (some of whom are disabled thank you) is not me. It is your ineptitude. No, not every ER visit would be suddenly gone, but on average for the last five years I would have only gone FOUR times. Three of those allergies, once for Domestic violence issues.

I miss the illusion that should I ever be in need of anything, it would be there. I miss the idea that I could rest at night without this unabiding terror that should something break like, a wheelchair or my computer, I will not suddenly be cut off fromt he world, trapped in my own home. Even with my computer I feel trapped. The same feeling would be there without my computer and with a working wheelchair. I know this. It terrifies me.

Right now, I am once again suicidal. I already got the help I need to make it until morning. M talked me back to a safe point. Still, insurance people, you should stop trying to murder people by denying them their needs. Stop pushing the idea that an increase in quality of life does not matter. When you or someone you love is suddenly in this minority, you may still be clueless… but I will fight for you, if my hands aren’t full fighting for my right to live.

Denying me a wheelchair is denying my right to live.

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8 Comments

  1. I think the medical profession CAN be like that … IF a person only ever experiences relatively “routine” medical problems. By “routine,” I mean:

    1. Taught in medical schools
    2. Familiar to doctors because they both see it and also recognize it frequently (of course they recognize it if it is taught in medical schools)

    Of course if you have less common medical problems then things won’t go as well because it is less likely that your conditions will be taught much in medical school, and even if they are they won’t be familiar to doctors if they rarely encounter patients with that condition.

    And then are are all sorts of additional issues that can get twisted into all of this. If you’re a member of a population that tends to be taken less seriously or devalued by medical researchers, then issues specific to you may not be researched as closely. Witness how long it took for doctors to understand that symptoms of heart disease manifest themselves differently in women than they do in men, for example. It is only in more recent decades that women have started to be as valued as men. And if a person comes from a background where they may have had little education, or have language processing problems or other issues that make it harder for them to express themselves in ways that doctors are familiar with and feel comfortable with, then that’s one more thing that can make it harder for doctors to listen to patients even when they’re describing symptoms (albeit, possibly in a way doctors aren’t used to) that should be pointing clearly to so-called “routine” medical issues.

    Unfortunately, anyone who falls outside of all these things, or any of them, does tend to end up with a different experience of the medical system. If a person is middle class, educated, articulate, and caucasin, then all those layers of privilege help because then they are at least in a better position to advocate for themselves–and maybe be listened to when they do, if not by the doctors then by others who might be recruited to help them fight. But it still sucks even if you DO have these layers of privilege (as I do) and sucks worse if you don’t.

    Sorry that this has been your experience of the medical system.

  2. Maybe one of the naysayers would lend you their car? Then they too can be more mobile without wheels. Fools.

  3. Oh my friend…

    Someday I will put in motion the things that will fix this.

  4. Since I never learned to drive this could end up with layers of hilarity! I imagine it in a cartoon like fashion not the ahh car i am in a car fashion.

  5. I hope so. I am willing to help as much as I can, yet sometimes I feel that I could scream and rage and threaten nasty things that are against my nature in a crowded room and no one would hear me.

  6. I try and remember that doctors are human yet, it strikes me as the people with the rarer conditions that they do not bother with in medical school (my list comprises way too many of those) are the ones who actually NEED the doctors the most. It isn’t as if I am asking for this just because I want to. I cannot think of anyone who wants a visible disability. I am sure at moments the lack of respect for invisible disabilities does give momentary flashes of this, but over all when I could hide my disability a few angry glares when I had to use a store scooter do not compare to the treatment I get using a chair.

    I secretly hope, even though I know it is totally delusional, that Obama’s attempt at socialized medicine fixes this. I know it won’t because the problem is systemic. The people with a limited education are growing in numbers, and since the only people taken seriously in this world are white men with money, I would expect my experience is far too common. I wonder how many times the government and medical professionals have squandered the money they balk at spending on this very sort of thing, as well. This is hardly an isolated incident. Sorry I am babbling. I know you understand. Still, I haven’t heard of many people even with “normal disabilities” having a better experience. Perhaps this is because disability in and of itself means over all poor?

  7. […] The Illusion of Disability 03/15/2010 tags: Autistic Spectrum, Disability, Inclusion & Accessibility, Wheelchair Users by Kateryna Fury [Crossposted to Textual Fury] […]

  8. K, I submitted a couple of comment on this post over at Turner & Kowalski–hope they help. Disappointed to learn that treatment may get worse with a chair over a scooter–though it will give way more independence; am curious about how things will go. So tired of people’s disablism sometimes.


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