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Disability

I finally did something I should have done at least 2 years ago: I contacted the disability resource center on campus regarding accommodations for my mood disorder. It feels like signing my own death sentence, or at the very least admitting defeat. I would never have done it, but I need an extension to complete my degree (I “should” be graduating this semester) and my academic adviser suggested this as my first step.

disability form

part of the registration form requesting information about the type of disability, problems it causes in an academic setting, previous and currently-requested accommodations

I’ve been putting the whole thing off because of internalized stigma around mental illness, and possibly also some ableism. Saying I have a disability – rather than “I’m going through a rough time” – marks me as different, deficient, other. Possibly for life.

My hope for the future has relied heavily upon the belief that the difficulties I’ve been facing (my whole life) are temporary – “a minor setback” – and soon I will “recover” and have a “normal” life. Ironically, I was able to take this step because I’ve been feeling better: with more hope, positive self-esteem, determination, energy… but the obstacles to functioning in society are still real. I keep saying I just need things to settle down a bit so I can get my feet under me, but experience says they never will. (And to be honest, I’m not sure I’d want them to. For things to settle down as much as it seems I need, life would be boring.)

Life is chaotic. Our society isn’t built for people like me. (It actively and persistently oppresses us.) I can learn, grow, adapt, take meds, reach out for support, request accommodations… I recently learned about MTHFR mutations and suspect they may be a contributing factor; I plan to talk to the APN about genetic testing and supplements that might be helpful, in hopes we can get my insurance to cover them. But even with that: much if not most of the food that is available to me has been “fortified” with folic acid, the very substance that may be interfering with my body’s functioning.

My point is, social, institutional, economic, and other norms need to change before marginalized groups and individuals will be able to live “normal” lives.

If that’s what we even want. “Normal” as defined by whom? I don’t want to “be productive” and “contribute to the economy.” I want to thrive. I want to express myself creatively, share joy with others, feel safe and whole and loved…

One of the things that makes requesting disability accommodations at school so painful is that academic excellence used to be a major strength – possibly the major strength – I relied on to survive. I wasn’t being challenged on my level in elementary and middle school, so all I really had were my grades. They were my proof that I was worthy of existing. They provided some stability in a chaotic home. Even as I began to be challenged in high school and undergrad and developed a love of learning, my grades were a primary source of self-confidence and pride. Academic excellence was – and to some extent still is – an important part of my identity. Too bad it doesn’t actually mean all that much in the real world.

A woman smiles broadly while holding up a letter.

Maria was very happy to receive an A for the term!

Now my classes aren’t really about learning information and answering questions on a test or writing papers. I can do those things – when I manage to concentrate, which is becoming quite difficult. They’re about practical skills, social skills, being and doing and interacting – often on a deeply personal level. They’ve been churning up the painful realities of my life – that’s what forced me into therapy. I can’t just put my blinders on and memorize facts anymore, I have to look in the mirror, internalize things, face my worst fears, and guide others through them.

I have to juggle academic responsibilities with everyday life, which has become a lot more complex since I graduated college. There’s always something. Getting Fox to and from work every day. Remembering to take antibiotics that are making me sick following periodontal surgery. A problem with our plumbing that’s got Mom stressed out. Everyday chores… I never got the hang of them. And for some crazy reason I’ve decided that now is a good time to adopt new pet rats…

from reelmomevents.com

from reelmomevents.com

The worst part is, I have to prove that there’s something wrong with me. The head of the disability resource center replied to my email: she won’t even schedule an appointment to talk to me until she receives documentation of my difficulties. The guidelines for said documentation are quite intimidating:

  • a complete DSM-IV diagnosis (which Wakana actively avoids and psychiatric professionals have disagreed on)
  • description of my specific symptoms (I could write that)
  • my current treatment
  • “identification of the substantial limitation on a major life activity presented by the disability” and how that applies to academics
  • recommendation of specific accommodations that are supported by the diagnostic information
  • all this information has to be on official letterhead that includes the mental health professional’s credentials and contact information

I think Wakana and I could come up with something useful for most of those items, but we’ve drawn a blank when trying to come up with specific accommodations relevant to an academic setting that would actually help me. (I doubt “not having to demonstrate the skills I’m supposed to have been developing over the course of the semester” is an option.) That’s part of why I wanted to talk to the head of the disability resource center: to explain my situation and learn what requests might be considered relevant and reasonable. (e.g. What accommodations might reduce the social anxiety I experience around having to demonstrate my skills?) There’s information on the website, but it’s not really relevant to my situation.

It also irks me that throughout the site, “it is the student’s responsibility to” fight tooth and nail for these accommodations. I’m thinking perhaps the people who came up with these policies do not have disabilities – psychiatric or otherwise. At the time(s) when I would have benefited the most from having a documented disability and certified requests for accommodations, I was in no condition to be acquiring such documentation and meeting with indifferent strangers. (One might argue I was in no condition to be taking classes, but that perspective might exclude me from higher education indefinitely. Isn’t that what the disabilities resource center is supposed to help avoid?)

Reaching out for help with psychiatric issues isn’t easy. People say “go get help” like it’s the easiest, most obvious thing in the world. It’s not. It’s counter-cultural. It’s acknowledging a reality most people don’t want to accept: that we’re vulnerable and have fears and doubts and feel pain … That dedication and hard work (and good grades) don’t provide happiness, wellness, or financial stability. People don’t want to consider the possibility that maybe the dominant Western cultural expectations aren’t realistic and may even be harmful. They don’t want to believe that we’re honestly having a problem; they tell us we’re being lazy.

In a way applying for disability accommodations is admitting defeat, it’s saying: “I find your game too difficult, so I need you to change the rules for me, specifically, because I’m less capable than everyone else.”

Except that clearly it’s not everyone else.

And when we do reach out for help, the response is far from welcoming and supportive. We’re put on waiting lists, required to fill out mountains of paperwork, interrogated, told we can schedule an appointment after providing documentation, etc. It fuels the cognitive distortions that are common in depression, especially “I don’t matter.” and “No one cares about me.” It makes following through on the initial request for help very difficult.

Almost as though the very people who are supposed to be helping us don’t want to.

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3 thoughts on “Disability

  1. The bureaucracy involved in receiving assistance related to mental health has always astounded me. It’s a nightmare. I personally can barely fill out the forms with my insurance information on them when seeing a new doctor without panicking that I’m screwing something up or getting self-conscious. The fact that in order to receive any kind of outside assistance requires so much work on the part of the person in need is quite terrible. I know that when I’ve been at my worst, there’s no way in hell I would have been able to do any of that stuff on my own. I couldn’t even manage to get myself to the emergency room on my own, my regular doctor noticed the cuts on my arms and recommended I go there and talked to the ER staff prior to me showing up so I would be less intimidated by it.

    I don’t get it. Asking someone with severe anxiety to fill out a mountain of forms is like asking someone in a wheelchair to go up stairs. I mean, maybe if they got out of the wheelchair and pulled themselves up with only their arms they could do it, but that would be such a disgusting expectation to have of somebody in that situation that no one would ever do it. Giving someone with a psychiatric disorder a mountain of paperwork is similar, I think. Because it basically requires you to be in a constant state of extreme panic until everything is done. Which is gross. If they really need all of this bureaucratic crap in order to function, they should have people on staff who are willing to assist people with it, because that’s what would actually be accommodating people who have a disability. The process you’re describing is absolutely not accommodating in any way.

    Liked by 1 person

    • I couldn’t agree more. Wakana seemed almost as overwhelmed as I was by the documentation I need her to provide. I spent most of the time we were working on it pacing around the room frantically shaking maracas; if I didn’t have that outlet I think I might have burst!

      Like

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