How Do I Deal With the Emotional Side of Disability?

Since at least junior high (around 16 years ago) I’ve suffered from what I now know is the wonderful anxiety/depression combo pack. And for twelve of those years, I’ve also enjoyed the feeling of multiple torn vertebral discs that won’t heal and associated arthritis. For the most part, fortunately, my mental and physical issues have stayed on their respective corners and played by themselves.Occasionally pain leads to some depression, but it’s easy to figure out and deal with. Until recently, at least.

A few weeks ago my pain jumped up a few notches on that fucking 0-10 scale doctors love to use, and I found myself limping quite badly on my walk home. It’s rarely been so dramatic, but fine, whatever, been there done that. Except this time a woman coming the other direction jaywalked twice to go as far around me as she could. Then a group of shouting, laughing, running tweens stopped in their tracks fifty feet ahead of me, went silent, and didn’t say a word or glance my way as they filed by slowly. Finally, another double jaywalker. All on one block.

I felt like a monster. An actual, straight-out-of-goddamn-Shelley monster. I’ve never felt so ashamed of myself or my body (even as an overweight teen), a shame that just seems to sink deeper into my bones every time I have to think about it. I was suicidal that night, couldn’t even bring myself to mention it to a psychiatrist for weeks because I guess it struck just the right chink in the armor.

I’ve thought about asking friends with physical disabilities about this, about how you react to and deal with that kind of encounter, that reaction of disgust, mistrust, fear, whatever it is. But I’m ashamed there, too. I limp sometimes. I use a cane sometimes. I’ll probably take anti-seizure meds, muscle relaxants, nerve pain meds, and piles of painkillers every day of my life. But I don’t consider myself disabled. I have mobility problems, but there’s a degree of separation there and I feel like a whiny asshole asking people dealing with issues so much worse than mine how I should deal with a limp and a glare.

I guess I need to though, because I’m at a loss and I’m worried about my next depressive episode. So when some asshole treats me like a monster to be avoided…what do I do with that? Smile and nod like a good Minnesotan? Give them the finger? Kidnap their women and abscond with them up the side of the Empire State Building?

I have no idea. And am I an asshole for asking a self-described cripple?

Thanks,

Walking Without Rhythm

Dear Walking Without Rhythm,

I am so, so, so sorry that you went through this nearly universal disability experience. It brought tears to my eyes: tears thinking of another human being going through this, and tears of recognition, remembering the times I’ve done through the same thing.

And I am so, so, so glad you wrote me about it.

I want to take this backward, if I might. Is it offensive that you, a person who does not see himself as disabled, would ask me how to handle this horrible situation? First of all, even if you were writing to ask me about how to handle a temporarily sprained ankle and the looks and judgment of others I would not be offended. But also: honey. You are one of us.

I see that you do not self-define as disabled. It sounds like this isn’t an issue of your feeling better than other disabled people, or of your being squicked by the idea of the label, but of your thinking your difficulties do not add up to your being impaired enough to deserve this definition. You feel whiny asking about social ostracization, agonizing pain, and suicidal thoughts. I’m just going to repeat this so you can see how ridiculous it is. You feel whiny. Asking about gut-wrenching social ostracization. Whiny. About agonizing pain. (Anyone who knows about vertebral discs knows that you are dealing with childbirth-scale pain, here.) About suicidal ideation. That is the worst kind of mental anguish, suicidal ideation. I know. I’ve had it. And you think you can’t be disabled because why? Because some other folks with disabilities have it worse? No. This is not how disability works. Much like bisexuality, I sort of feel like one of the defining characteristics of disability is the thought that you are not disabled enough to call yourself ‘disabled.’ Everyone I know who is disabled has had this feeling, except for one friend who has profound enough cerebral palsy that she communicates with a reflective device and communication system strapped to her power chair.She is literally the only disabled friend of mine who has told me she always feels ‘disabled enough’ to use the term.

Let me define disability for you in two ways:

  1. The definition from the U.S. Department of Justice’s ADA Guide: An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.” By that definition, you are disabled. Even just by that last phrase.
  2. The social model of disability: this model rejects the medical model of disability, which is a functional description of the body and brain as a machine to be fixed in order to conform with normative values dispensed by generally able-bodied doctors, for a more reality-based model: systemic barriers, negative or hostile attitudes and exclusion by society (whether deliberately or not), and a design of our surroundings for able-bodied, calm-minded people is what creates disability — not the degree of our impairment. By that definition, you are disabled, as well. (I would argue you also fit the medical model, but since I reject that model that is neither here nor there).

I’m sorry to be pushy on this front. But being disabled in a world created for able-bodied, mentally healthy people is a horribly isolating experience, and to deny yourself the fellowship of your fellow crips makes it even worse. Please stop doing that to yourself. Seriously. There is a whole world of disability activists, humorists, essayists, and plain old regular folks who support each other to get through times like this, which is part of what I’m going to suggest to you. Do not cut yourself off from your community. Visit butyoudontlooksick.com to read stories just like yours. Read up on crip theory. Especially when you are visibly impaired with a cane, allow yourself the Crip Nod. Feeling less alone in this is so so so SO important. Even allowing yourself to see yourself as part of the disability community, and reading and watching and observing from that mindset, is going to help you.

I, too, have a combination of mental health issues with mobility issues. And they dance together in horrible ways sometimes. Especially when people treat you like a monster.

I have had this experience you describe — fairly recently, actually. I found myself without a cane (speaking of not thinking you’re disabled enough to call yourself disabled: sometimes I don’t need any mobility equipment at all — until I do), limping along, late at night. And when security guards started hassling me, and drunks started laughing at me, I then started crying — which made things even better. I sat at a bus stop and everyone got up and moved to the other side of the stop.

I’ve had this experience when on my crutches in hardware stores (a mother once grabbed her curious child and RAN AWAY from me), in line at the grocery store, on public transportation, and even on a more quiet level at the beach and at work.

And it sucks, and it makes you feel absolutely horrible.

I don’t blame you for not telling your psychiatrist. It’s hard to talk to able-bodied people about this. (I assume this person is able-bodied since you didn’t tell me otherwise.)

It is this random ostracization that I find the most viscerally difficult about being a cripple (and a queer, incidentally). I’m sure I’ve also faced job discrimination, and I know I’ve faced condescension. But when people treat you as if you are not even human, it is like a physical blow that sinks deep deep deep into your marrow, your gut, your heart. And, as you described so beautifully and viscerally, for some reason we take this on as shame. Shame for our actions (which we can’t fucking help; limping is not FUN, people). Shame of our poor beaten-up bodies. Shame for ‘letting it get to us.’ Oh, all the goddamned shame.

I have been there. So many people like us have. You are not alone, no matter how much those fuckfaces made you feel like you were.

A practical suggestion, which I obviously did not follow a few weeks ago when I found myself in a similar situation: carrying a folding cane for times like this helps. (I’ve noticed many people can handle a limping person with a cane a lot better than a randomly limping person. Are they afraid we are drunk? Are they afraid that we are hurt and will ask them for help and this will somehow involve them in a scary situation? I don’t fucking know.)

As for what you do besides that (and as you probably know people will act this way even if you have a cane, sometimes): you do whatever you have to, to get through it. Sure. Give them the finger. Say something juvenile (I think I asked a mocking security guard why he didn’t have a penis that night. Sexist. Stupid.  Embarrassing. But it made me feel, briefly, like a person.). Glare back. Ignore them. Yell. Make a joke. Fucking moon them. I don’t care. You take care of yourself the best way you possibly can.

And then when you get away to a safe place, you tell people. If you have disabled friends, those are really the best. We are not going to think you have no right to describe your own experience, just because you don’t have a hang tag on your car. (Do you? It sounds like you could really use one, by the way.) You tell people, and that makes you feel less alone, and you cry, and you feel like shit about yourself even though the people who dehumanized you are the ones who should feel like shit about themselves, and then you tell more people, to combat the feeling of isolation.

Treating another human being like they are a monster is pretty much the worst thing someone can do to a person. It fucking hurts like hell whether or not you have pre-existing mental health issues or not. It is serious. It is horrible. And it is damaging. I guess that’s what I want to leave you with, above all else: you are not a whiner. You are experiencing abuse. This is serious shit. This is SERIOUS. SHIT. And you are worth treating it that way.

Solidarity, man. :secret cripple power fist: And I hope you don’t kill yourself. The world needs more of us than it needs of them.

The letter originally appeared in bitterempire.com on October 22, 2015.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s