A Collection of Disability, Arts, Journals, Tips…

Realized today that I’m a billboard, meaning an advertisement. For some people, I’m the only queer, the only African American, and (all too often, even in 2008) the only disabled person many people will ever meet. This puts me, often without my knowledge or consent, in the role of representing my various subcultures to the mainstream population. I never asked for this role and, even though I’ve been forced to play it since childhood, I have at times felt extremely unprepared.

As a smart aleck 12 year old, complained to my mother about feeling not ready for all this responsibility. She said, “Do you think anyone prepared Martin Luther King?” I was silenced; who could argue with that.

Today I mourn the passing of Sue Felker, my school- based personal care assistant from 4th grad until the day I graduated. Before her I had 3 other assistants. Mrs. Felker was around to celebrate all the moments that matter in a young woman’s life- first period, first day of high school, and acceptance into college (I got into my first choice, by the way!).

We fought at times. It was hard to be an independent minded teenager, who always needed help from an adult. But she was, I knew even I was frustrated at times, a friend who was there to help me study and evolve.

My thoughts and prayers are with her husband, daughter, grandchildren, and the many people who loved her.

My assistant’s father has had a brain tumor; it’s non malignant (Thank God) and the surgeon managed to remove 95% of it. He’ll be fine, but need to a rehab hospital to recover. I told her to make sure that someone checked on him everyday. I know from my activist work that people tend to get neglected in those places.

She thanked me for concern and said she’d make sure her family took care of him. She’s a very responsible girl who loves her daddy bunches, so I’m sure she’ll watch him closely. After all these horrible discussions, I brought a pizza to celebrate her birthday- a happy ending! I was glad to help.

I have decided to file bankruptcy. I have tons of disability related debt. The final straw on this camel’s back was talking to a bill collector, who, he said, had a disabled brother. I told him about this blog and my life as a writer. He told me to file, himself, even though he worked for the credit card company. That, I suppose, was the wake up call I needed. I’m calling the powers that be on Monday. Than you for your kind advice sir! I’ll let you know what they say and what I choose, because it is my choice after all.

This is a poem I wrote at writing group tonight. It’s one of three and very raw. It’s the only disability related one of the bunch. I can’t wait to see what you all think.

My lines
will not fit on the page
unyielding letters that I craft in always kidlike penmanship
heavy, impaired handwriting makes marks
always fat and imperfect, despite longing for sleek strokes.

I gulp, breathe heavy, frustrated-
like an over exuberant, overwhelmed, overcame beast,
or artist, as the case my be.

Somehow I doubt, that’s the kind
of heavy breathing the prompter
of this proposal meant when she suggested
raunchy poems as November’s topic.

Being sick sucks. Being sick when you’re disabled sucks worse. Being sick when you’re a writer with a disability on a deadline sucks worse. Trust me, I know. Since Friday, I’ve barely gotten 6 hours of work done. All I want to do is sleep. I’m so frustrated! I’m not a lazy person by nature, but this whatever it is turning me into one. I hope that the eight tubes of blood they took today will reveal an easy to fix illness (like a vitamin deficiency of something). They are doing 14 tests and I’ll get the results back Wednesday. Wish me luck!

I’ve been thinking about wrongful life suits lately. These are the lawsuits that parents bring against doctors who didn’t do every test possible to determine which disability a fetus might have. These parents publicly tell a court of law that they wouldn’t want their kid if they knew they would have whatever disability he or she does! I’m sorry, but what? I may not have kids yet, although I definitely want them someday, but I thought the deal with parenthood was to love your kids no matter what. Not, I suppose, according to some people’s standards.

Personally, I feel sorry for all of those people’s kids- disabled and non-disabled alike. I wonder what it’s like to know that your parents don’t love you regardless. I’m glad I never had to live with person like that. In fact, that’s why my parents got divorced. My mother may not like it that I’m disabled, but she accepts it; she even accepts that I wouldn’t change it (although she doesn’t get why). My father, however, has never accepted my disability and tends to be really hateful to me. I don’t speak to him anymore, because he’s a toxic person.

Leon Sebek was a skydiver. His shoot didn’t open and he got wrapped around the tail of the plane. He lay in a quarry for 8 hours until rescuers found him. He was not supposed to survive, but seven months later he left the rehab hospital- walking and talking. His mind, however, is not what it once was and he’s not likely ever to work again

Ahad Israhfil is my stepdad says, “one lucky bastard.” At 14, he was accidentally shot while at his overnight grocery store job. No one survives the kind of injury, but no one told that to Ahad. Part of his skull was blown away by the gun. It was reconstructed and, now with hair grown over it, you can’t even tell that he had a skull injury. Later, Ahad went on to graduate with honors from a local community college, He’s in a manual wheelchair, has some motor delays, and speech impairment. But he went on, despite his challenges, to open a business with his cousin.

Both of these men make me proud to me an American with a disability. I’m proud of the way they triumphed.

I was feeling screwed today. As a disabled, queer, women of color I often feel screwed. I’m serious. Homophobia, ableism, racism, and sexism; there isn’t a today when I don’t deal with incident involving one of those lovely “isms”. I have to worry about running into some maniac who might want to kill me because of who I choose to sleep with. People assume they can jip me on change merely because I’m in a wheelchair. Some people think okay to use the N-word on they phone when I opt to my civic duty and remindinf them to vote. Men look at my boobs and make rude comments or stare.

However, I wouldn’t opt to change anything about myself to access more of society’s privileges, which men, white people, heterosexuals, and people able-bodied do unquestioningly get. I figure they get privilege; I get community. I’ll make that trade any day of the week.

Passing is something done by people of marginalized groups in an attempt to access the often undeserved privilege of higher ranking groups (i.e. black passing as white, disabled passing as non-disabled, non-heterosexuals passing as heterosexuals). It’s been done for centuries. People I know who’ve done it say that doing so rips out small pieces of your soul per attempt. I know when I did it (trying to play straight in my case) it felt horrible. I refuse to do it anymore, if you can’t deal with my disability, my brown skin, or my queerness (I’m now proudly and out rightly bisexual), or even my zaftig figure (I’m a chubby girl who shops at Lane Bryant with no shame), I have three words for you. “There’s the door!”