This cautionary tale was found on the blog of another disabled person she calls herself “Textual fury” please read and share
I am sitting in a chair that gives me pressure sores, unable to sit right without dislocating my spine. Why? My wheelchair is broken. Why? A transport company decided that the minimum standard by federal law was just a guideline to be ignored. ARe they going to pay for it? Nope. I do. I pay for it in pressure sores and pain. I have had no pain meds for a month. No other meds for longer. I am caught in a tortured moment with no bathing, possibly no food, no carer, and I am told that I can always go into a nursing home. Where no one can meet my needs, so I get to suffer publically. There is no quiet space. There is no safe space. My crime? Being disabled and not backing down on having my needs met. I want to give up. That means I want to die. I would rather not though. Death means I do not have to call anyone else, the pain in my body stops, and I can breathe. It means I do not have to worry about the blood draws I cannot get done because there is no way to the lab. It means I do not have to worry about what happens to the cats because I do not exist therefore worry and pain cease.
Carer agencies like the ones I have dealt with for the last few months who jerk people around, let failgivers destroy their laundry and give the option of no recompense and thus nothing to wear or no care and still no compensation are why people want to die. The entire debate about assisted suicide and what merits the right to die? I see it falling along these lines more than it ever has about the actual medical aspect andpain aspect. Do I have to suffer? Yes. I am poor so I do. If I was ab le to do private pay, if I was able to actually do things and just wanted a carer, if I was able to walk, if I was able to shower, if I was able… I would not. I however get to live in a world where every breath makes me cry. Where crying makes my eyes bleed and where that scares people so they quit. Where I am not valuable because of autism, brain injury, spinal cord injury, Ehlers danlos syndrome, seizures and allergies. The allergies are as criminal to people as autism. After all its not serious, I could only die. How dare I make them not wear perfume feeling naked to the world, exposed because I do not let them conform as I require air. How dare I breathe.
This is a strong and constant message. It has been omnipresent in my life since birth. My parents? I had to serve and obey. Every time they saw a disabled person I was told I must never become ill because those people a re trash. The horror when I stopped trying to find a job and “let myself become homeless” was palpable. When I applied for disability I was told I just wanted easy money. That seems to be the definition of disability in the minds of those who are not. Its easy. I just sit here all day eating or sleeping with someone to bathe me so I have nothing to do. Except fight for care, go to the doctor enough that it is a full time job, and try to get my needs met. I sleep four hours a night, interrupted. I feel agony even WITH pain meds. Yet disability is easy. Really it is, you just at least every three years explain to a stranger why a payment so far below standard of living in the country you live in is something you deserve. If you fail? Fuck you. You must admit you are scum, worthless. Show them how little you own. How few peopl el;ike you.
The media is no better. An able bodied actor plays a wheelchair bound, yes BOUND because no person in a wheelchair is set free by being able to move. We are tethered and pitied. Its rarely a truly disabled person. Even then its a more able person than the disability level often. BReaking Bad’s kid with Cerebral Palsy? Actually has it but is not so bad he needs crutches and had to learn. Still, he got the job not an able bodied person unlike in Glee, every oscar winning pity party ever. No they never tell a story like mine on TV because I am the exact wrong disabled person. I inspire people by fighting constantly for basic rights. I do not just accept my lot. I do not over come. I deal with it. I adapt. I do not aspire to walk again. Walking hurts. Fuck it. I can actually walk three steps. Good enough. Yet because that is not my life goal, because I will not endure nearly fatal reactions MORE than I already HAVE TO I do not get care.
The answer by Medicaid? Keep calling places. Who pays for the extra minutes since I have used three months of them and have fried my brain daily trying to get my needs met? Oh wait… me. Somehow. Who pays for the lost clothing? Me. Who pays for spoiled food? Me. Who pays for the missed medicines, missed meals, and being in pain? Me. Who pays for THEIR perfume wearing? Me. Yet I am the bad guy because I cannot just get rid of my cats. Selena’s plight makes it obvious no one wants cats with special needs anyway. I am the social black cat, unwanted, undesired and hated.
No this is not a rant saying everyone hates me. It is a truth telling stating that the average person who sees me is afraid. I am a bald woman, I am fat, I am visibly ill. How dare I remind them of their fucking mortality. I am surrounded online by people who are above that. I wouldnot survive without them. Yet I must choose to give up my home or my carer. I am being forced to give up and die or give up the things that actually make all this pain almost worth it. ALMOST. I am sorry but no amount of love is worth suffering.
I want to die. I am pissed as hell that I want to die. A standard in the medical field ANYWHERE but New Mexico? No perfumes and scented products. Not here. Here this is treated like I am violating people, like I am beating them. I have been beaten, I have been violated, but I am the violator because I am disabled.