Happy 2nd annual Disability March, here is my protest

I haven’t contributed anything to society.

I was born with a neuromuscular disease which makes my muscles and bones weaken until I prematurely die.

I’ve always been a temporary fixture in my family’s lives, a genetic embarrassment, a social burden. A week before I turned 13, my father, a decorated Vietnam vet, was murdered by a drunk driver who only received community service. My mother developed aggressive early onset dementia as I got out of school and now I am her caretaker and sole provider but the only thing I can provide is a cut of $850 I receive each month from disability.

I was put in special ed although I took all the same classes as my nondisabled peers who consistently received things like detention or passed with Ds and Cs on their report cards. I was an honors student K–12 because I had to be; if I didn’t it would be evidence that because I had to sit in a chair with wheels I was underperforming and would be a bad influence on the normal children. I was never at risk for detention not because of my good behavior, but because my consequences were to lose the privilege of a standardized public education. Not complaining was a lot harder than studying because (and in spite of) my being a special ed student required attendance from me in the segregated facility, away from my classes. The short bus dropping me off at school and back at home hours late each day because of understaffing.

As hard as it was, I managed it, but I couldn’t do the same in college and I had to drop out. $850 a month couldn’t cover transportation, food, assistance, etc. even though a scholarship could provide textbooks.

I’ve written my own books; books on science and spirituality as well as an array of fiction. Books that were well received and still sell consistently, but I’ve never received a cent from them and can’t hold my own copyrights. As my health degenerates I am more and more dependent on the healthcare I received through disability so I’ve had to forfeit the rights and earnings of everything I’ve created because as time goes on I can create less and less but if I get taken off of disability I can’t get back on. On paper it looks fraudulent that someone who is supposedly as terminally ill as I am can somehow go off of disability and support myself for a limited amount of time.

I can’t be a true friend, neighbor, or citizen. I can’t leave my house; I can’t afford the bus fare for the handicap bus. I can’t show my face in public; two years ago which bashed out my front teeth but my health care can’t provide treatment. I can’t connect to people; the worse things become in America the more I am blamed for being nothing more than a leech, a useless eater.

I am the problem.

My life is a burden to the entire country.

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