Let’s talk about disability

even though it’s still hush hush in our society

Photo by Jonas Hansel via Foter.com under CC BY-NC-SA

You’re not supposed to talk about disability. You’re not supposed to be on disability. You’re supposed to feel bad about having it.

Especially if you’re on it for a mental illness.

If you can’t walk, everyone accepts your disability.

Mental disabilities are harder for people to understand. Why exactly can’t you work if you have bipolar disorder? Why can some people with bipolar disorder work and others with it can’t?

People don’t know about mental illness. We don’t learn about it in school. It’s hard to get your own family to read about even when you have it—they don’t have time, they’re not interested, they don’t believe it exists, or whatever. They’re not motivated to understand [you].

Employers aren’t supposed to discriminate based on disability, but they do. If you have gaps in your employment history where you stayed in a psychiatric hospital—for example—you’re not going to get hired.

I have been diagnosed with:

• bipolar-type schizoaffective disorder
• obsessive-compulsive disorder
• tardive dyskinesia

I have a history of:

• chronic suicidality
• homelessness
• substance abuse

I struggle just to not want to kill myself every day. Recently I had a period of about four days in which I got through the day from waking up to going to bed in a smoother way than I had in six months. That is a victory for me: making it through the day without a potentially deadly psychological crisis.

So why can’t I work? Everyone has to work, don’t they?—whether they like it or not, they have to work.

It came as a surprise to me to learn in recent years that some people are relatively ok with their lives working in the same companies I worked in for over a decade of my working life. That doesn’t mean they love every minute of it. That doesn’t mean they wouldn’t rather be in Acapulco. But they don’t do things like walk into a room of web developers and tell them their code is so bad, I’d rather kill myself than have to work with individuals of their caliber.

I did that.

I meant it.

My employer saw it as a problem.

Recently my doctor suggested I do some contract work online. He suggested that I do a few jobs for free to get myself established, because otherwise—according to him—I probably wouldn’t get any work at all. Here’s my résumé. I shouldn’t have to work for free. At all. Ever.

Part of why I need disability is I cannot work. I have to take a four-hour nap every day to keep my consciousness sane. With my TD, I cannot type sitting up—I have to lie down to get my body stable enough to do that kind of fine movement.

But part of why I need disability is I can’t get work. No one is going to hire me—because I can’t do the job. Yes, I have the technical skills to program software in a high-tech company, but I don’t have the physical and mental ability to work in an office anymore. Companies aren’t required to accommodate me by providing an office where I can lie down to type or allowing me a two-hour work day..which is about all I can work each day. There’s no way I could work at a restaurant—I hardly have the motor skills to eat a meal myself. I have to use sippy cups so I don’t spill my own drink—how could I serve a drink to someone else?

I am a useful person. But that doesn’t mean I can get a job. That’s why disability exists: for the gap between who companies will hire and the totality of people who exist. I would work if I could. I love the work of software engineering. I am good at it. It pays five times what my disability pays. It’s the difference between having money to burn and not really being able to live independently, monetarily. I have to live with someone else. Finding someone to live with, given my illnesses, is difficult. Most of my family won’t even talk to me. I’m hoping, soon, to move in with a friend in a similar situation and pool our resources. We think it’s going to be awesome. Most people would call it subsistence.

Disability gets re-evaluated every three years, I think. I live in fear that my disability will be taken away, because it would likely result in my being homeless again. Listen to that phrase: being homeless again. Have you ever been homeless due to a mental disability, due to mental illness? I have. And if some doctor decides that I’m able to work..when in actuality I can’t find a job..I will be homeless again.

Being on disability isn’t some amusement park ride. I live in Nashville, Tennessee. I have for a year. In that time, I’ve only found one psychiatrist who will see me. Others are booked out so far that I would run out of my medication before I ever got to see them. That is life-saving medication—without it I become suicidal, manic, unmanageably psychotic. Other psychiatrists won’t see patients who have any element of bipolar or schizophrenia. That’s right. They went to school to learn how to deal with the panoply of mental illnesses and have decided for whatever reason not to see patients with certain mental illnesses—the ones I have.

And even the psychiatrist I saw for eight months eventually decided not to see me. He dropped me as his patient because my case was “too complex” and suggested I get a psychiatrist at Vanderbilt. Vanderbilt had a three-month waiting list. My now ex-psychiatrist agreed to provide me medication until I found a new psychiatrist, but the kindest way to describe what he has actually done is to say that he has provided that medication begrudgingly. Where before, if I needed extra care on a day when I didn’t have an appointment, he saw me that day. Now, when I’m running out of a medicine which, when stopped suddenly, can cause seizures, and I call his office to request a refill, he doesn’t return my calls. A week passes. Two weeks. I call again. He ignores me. I have to go to extraordinary lengths to get prescriptions for medicines that if I stop taking them could give me seizures. The other medicines I take keep me from killing myself, reduce my mania and psychosis, and lessen my TD symptoms.

So: getting medicine that is saving my life is a full-time job. Employers aren’t on my side: I’m not profitable (in their limited view). Doctors aren’t on my side: I’m not profitable to them, either. Depression is no joke, but anxiety and depression patients are apparently more desirable than bipolar and schizophrenia patients. Think about this: a doctor who is trained to treat my illnesses refuses to treat patients with those illnesses. I’m asking you to see that even finding a doctor who is willing to treat me is an extremely difficult task. And I’m not asking to be treated for free!—I’m paying them thousands of dollars a year to do so.

I wouldn’t trade my life with anyone’s. I am rich beyond belief in hope, talent, love. But I am asking you to see that having mental illness, in this society, takes you out of the driver’s seat of getting work. It’s not that I don’t want to work or some ridiculous shit like that. With my diagnoses, with my history of erratic office behavior, with my gaps in employment history where I was detained in mental hospitals, I can’t get a job.

I need my disability.

Not because I’m a useless person. Not because I couldn’t be a “useful” member of this society (read: economy) if things were arranged a little differently..but because my diagnoses lock me out of the world of work and I need a little help from the society to which I have given so much, in order to simply survive.