Prince and the Sparkle Brains (cw: disability, ableism, sexual abuse)

I am fortunate to be receiving a consultation from this writer on a 20 page manuscript.

Karrie higgins

The day Prince died, I was walking to the audiologist office to pick out hearing aids, Purple Rain playing on my purple iPod, my lipstick-red walking cane tapping its drumbeat on the sidewalk, vibrating through my wrist bones to my elbow bones to my shoulders to my clavicles to my brain, telling me: I am whole. Without my cane, without that drumbeat, my brain gets confused: Where is my musical limb?

The cane makes music just for me. When I walk to the beat, I drum to the beat. Doesn’t matter about my hearing anymore. I am a walking musical instrument.

Except it does matter, because certain music saved my life. Certain music still saves my life.

Maybe I can hear Prince like I did when I was a kid, I thought. How much of his music am I missing? What frequency is his voice?

I wanted a purple hearing aid to match my pastel…

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Fishing for Answers: An Exploration of Disability and Identity

One Sunday morning driving home from my graveyard job, I stopped at the Unitarian church to see what the sermon was about and consider whether I wanted to stay awake long enough for the service.
Here’s the gist the story I heard:
An American executive is vacationing on a small tropical island. He meets a fisherman living a simple yet happy life. He has one boat, with which he catches enough fish to survive, and a beautiful wife, with whom he watches the sunset every evening. The executive suggestions how this man can improve his life: Invest in a fleet of boats so he can catch more fish, turn a profit, hire more fishermen, and create a company in which he sells fish to people in other countries. He can become rich and live in Europe or America.
“What then?” the fisherman asks.
Then he can retire to a small tropical island, watch the sunset, and fish for fun.
The moral of the story is supposed to be that the fisherman already has all he really needs, without the stress and effort. This story upsets me; it talks about the ideal life that can be achieved without work. Or at least what society considers work. In some ways, it can be said I live this supposedly idyllic life. I have a one-room apartment with electricity and running water, but no TV or internet access. I go to a community art studio or to therapy appointments. I volunteer as a peer support worker at the psychiatric hospital. I get a monthly Social Security disability check that pays all my bills. So why would I want to change? Why would I want to go back to school or get a job?
My mother also lived this way, for most of life. She had a two-bedroom house with barely enough room for me and my brother to visit on weekends. She had electricity, running water, TV but no cable, and, except during the time when she was married to my stepfather, no internet. She had a cell phone, but didn’t use it often. She dressed modestly in long dresses. She volunteered at a soup kitchen and clothing bank. She had conservative religious beliefs that worked for her. She was diagnosed with schizo-affective disorder but didn’t get proper treatment, because she didn’t believe she had an illness. She’d carry a bottle of Depakote, only one of the medications she was prescribed, in her purse, taking one every once in a while, instead of as directed by her psychiatrist. She lived on my grandmother’s support until after my stepfather’s death, when she applied for disability.
The story scares me because I see the parallels between the lives of the idealized fisherman, my mother, and myself. I’m afraid I’ve fallen into a pattern of being outside of a culture that works, goes to school, and is competitive. While there are benefits to a life outside of the mainstream, my mother’s extreme religiosity, and her noncompliance with a psychiatric regimen, concern me.
I first got the idea to go on disability when I was in high school, though I didn’t know that was what it was called at the time. I was talking with my lab partner and sometimes-friend Erica. I felt powerless because I was bullied all the time, and didn’t fight back like she said I should. I lacked the will to live, which came from dealing with my mother’s repeated hospitalizations as well as having no friends at school. I told Erica there must be some government program you could get on if you couldn’t support yourself and didn’t know what else to do, if you just didn’t know how to survive. She said I’d have to prove I was a loser.
I began to seriously consider disability as an option when I had a roommate who’d lived in group homes before we moved in together. She was on disability and went to psychosocial rehabilitation. When I moved in with her, I had dropped out of college and was working, first at a used clothing store and then in group homes for people with developmental disabilities. I think if I had those jobs now, I’d tough it out and complain in a blog. I tell myself I wouldn’t quit unless I was fired. At the time, though, I was struggling and trying to figure out what was “wrong” with me. I began to wonder if I was, in fact, a loser.
I envied that my friend didn’t have to work. After I freaked out and was let go at the last home for the developmentally disabled, I told my step-aunt that I was going to be on disability. She said to fight it; try to get another job. She said I didn’t want to end up like my roommate. “She’s not healthy,” my aunt said.
The manager of the group home offered to write something on my disability form. The hospital psychiatrists wrote in the form as well. That’s how “psychosis otherwise unspecified” got into my chart. I didn’t have a hearing, just filled out paperwork at the Social Security Administration where  my case worker restated something I’d said: “I certify that my work history has always been sporadic.” I’ve since learned I was fortunate; most people are denied and must appeal multiple times.
I was staying in a women’s shelter when a representative from Social Security called to say I’d been approved. However I didn’t like when he said I needed my money managed. I argued that I could handle my own money.
“That’s not what your medical records indicate, ma’am,” he said.
I asked what my “medical records” said. He said it was detrimental to a patient’s mental health to learn their diagnosis. This causes me to remember the psych resident at the university hospital where I was being seen starting when I’d first dropped out of college, who’d noted that fact as a sign of mental deterioration. She’d told me people usually begin developing schizophrenia in their early twenties, and that they were watching to see if I got worse. What the doctor said had scared me. I’d never met anyone with schizophrenia who was leading a full and rewarding life, though I have met people like that now. In the back of my mind, always, was the fear that I would end up like my mother. My mother didn’t have the auditory or visual hallucinations associated with schizophrenia, though she did have delusions, such as that she was pregnant, or that my stepfather had come back from the dead.
Added to these fears now was the feeling that I was being treated unfairly like I was incompetent, now that I had the life I thought I’d wanted. When I’d still been struggling with employment, my former roommate’s life full of classes and outings had sounded appealing, but now that it had become my reality, I found it degrading. I went with a payee agency that talked me into cooperating, saying if I fought it, it would delay my benefits. I’d reached the shelter’s one-month time limit. So I got a payee. I tried attending a psychosocial rehabilitation program, but angrily quit when they said I needed a case manager. I went to an art program run by an organization that provided healthcare to people experiencing homelessness, though I sometimes thought the staff were patronizing, to therapy, and to a psychiatrist. I wrote and made art. I participated in online forums for people with depression.
Having become somewhat disillusioned with this way of life, I decided to better myself. I still had notes from college papers. I tried working on them, but my writing seemed too convoluted.. I took the classes necessary to transfer back to the university at the community college. I learned I was still in good standing at the university despite having failed some courses. Then, in an upper division English class at, I learned of a paid internship at the university press. Because I qualified for Work Study, I didn’t have to report my income to Social Security. It was the best job I ever had. I constantly worried about what I’d do after graduation, though. I asked another intern  what to say in interviews about my being on disability. She said to say it was a period of immaturity I’d gone through but had moved on from. I applied for a full-time position, but didn’t qualify because the internship was only a 20 hour per week job, and this job required full-time experience..  I asked the other intern what would I do now. “I don’t know what to tell ya,” she said. She was going to stay in the internship because she was going to grad school.
The Division of Vocational Rehabilitation helped me get a graveyard job at the local newspaper, publishing the online edition. I did well for my first three years there, and then the late-night hours and lack of sleep began to take their toll on me, exacerbating my symptoms. I had trouble concentrating and went from being the most accurate to making the most errors. I also would sometimes cry on the job. The entire time I was working, though I was no longer getting Social Security benefits, I obsessed over whether I should have ever received them in the first place, even wondering if I’d scammed the system. It all goes back to the ever-raging debate that takes place my head about whether I’m really “mentally ill.” The fact that I could hold a job even meant, to me, that maybe I was not. Therefore, I decided to go off medication, the first step in the downward spiral that eventually resulted in my being fired.
I told a counselor about the conversation I’d had with my friend in high school, where I mentioned that I thought I might go on some kind of assistance. I felt bad about having wanted to do that, but she reassured me by saying that children often get career goals from their parents. If your parents were doctors or lawyers, you might want to be a doctor or lawyer, for example. My father was a teacher, but didn’t like it. My mother was a professional mental patient. She said those were the options I’d naturally consider.
I thought about getting back on disability before I lost my job. I sent a Facebook message to family members , titled “Help.” I said  I’d given away many of my possessions and that I thought I might have to live with one of them. My brother replied, “How can I help you?” All I could say was, “I don’t know.” I found it difficult to ask for help when I wasn’t sure what was wrong, or that there was even anything really the matter. Mental illnesses are invisible. It’s not obvious by looking at me or even observing my behavior that I’m disabled, unlike the writers in Staring Back: The Disability Experience from the Inside Out, edited by Kenny Fries, which I’d read in college, who were Deaf or blind, or had cerebral palsy or multiple sclerosis.
I recently got to attend an event where I met local and nationally known poets with disabilities, and be on a panel. The woman who hosted it had written a book of poetry about how her multiple sclerosis was at first misdiagnosed as being merely part of her mental illnesses—bipolar disorder and PTSD. Other panelists also talked about their struggles with mental illness. I got to read some of my poetry and answer questions from the audience. It was a validating and empowering experience. I have found a community of other writers with and without disabilities. While I still tend to isolate myself, I find I am slowly becoming part of that community, where I can explore my identity.WP_20160317_14_17_21_Pro