Wednesday, October 16, 2013

About personal definitions

Sorry for all the emoting all over the place. It's been a rough couple of weeks, internet.

An interesting thing happened on the road to the next job search. (Sorry. It's the kind of line you always want to use, and almost never can.) So, I was talking to the recruiter attempting to help me find work. Very important information on this whole job recruitment thing, kind of vital, is that I am not looking for work through the ODSP work assist program. This is not because I don't think it works, but because I don't like the way the ODSP program treats its own clients, and I feel like, by and large, that encourages similar behavior from employers. I was fortunate to get a job fairly quickly while with ODSP, where I was then immediately told by a counsellor that I was the first client on ODSP she'd ever had who actually managed to get a job through ODSP. Since I've already explained how mild my CP actually is, I don't think I need to explain exactly how backwards that is.

So this time, I'm using another government-funded program, specifically designed for under-30s looking for work. They, by contrast, reassure me I am not the first person on ODSP they've been able to help, and they like to help, because it grants me access to all kinds of funding that my ODSP worker "forgets" to tell me about. But this is not another rant about ODSP (I promise.)

It's not uncommon that people in other government sectors are better at dealing with people with disabilities than the office that actually does the dealing. In the first place, I'm pretty sure the guidelines for ODSP begin with "Do not believe anything these people say." so there's a level of trust between me and other people that simply does not exist between me and ODSP. Of course, I am not stupid enough not to be able to recognize my own complacent privelidge in this. The fact is, I could almost "pass" for enabled. Which, to the ODSP office means I'm probably exaggerating the effects of my disability, and to everyone else means I'm not really "one of those" so to speak. Which is, to say the least, problematic.

So I tell this recruiter person that I am in a difficult situation, because it is difficult to underline the help I need until I'm already on the job, and that after that, people have a hard time giving me honest feedback, which is essential, because I can't parse what people are saying from what they really mean. I tell her that it is difficult to get what I need to do a good job, and still convince people that I really don't need a lot. She tells me it should not be a problem, that they've done a lot of this. She tells me of a blind woman who refuses to refer to herself as a person with a disability. She says this with a note of pride I am familiar with, and then suggests that maybe part of the problem is related to my self-esteem.

*sigh* Y'know, sometimes, I feel like I can't win with these people.

This blind woman I've never met is none of my business. Certainly, I define myself in terms I would never use for other people. I call myself a "handicapper." because it helps capture the person I am. It's a tongue-in-cheek reference to my non-existence athelecism, a throwback from my childhood, when my disability was miraculously not my problem to solve, but everyone else's, and my own petty rebellion in the form of reclamation. I don't exactly want people to be uncomfortable with me, but if they're going to be anyway, I'm going to have to find it amusing, won't I? The definition of self is a cornerstone to everything I am, as a person with a disability, as an asexual person, as a woman, as a human being who has faith in the general goodness of other human beings. But it always gives me pause when someone tells me they know someone who will not be defined as a person with a disability. Because oh my god, I have been there. And the person I was when I was there was not someone I liked.

I get told a lot that I am conceited. Part of this is because I genuinely believe I am usually more than what other people think I am, part of this is because I work so hard to be an open-minded person, and the assholes of the world have picked up on the fact that that is the line that hurts me the most. And then again, some of it is likely because I do have a strong belief in myself. It's a bit of an occupational hazard, the kind of thing no one outside disability culture can truly understand; people spend your life telling you how special, how you are, how unique and different from other people with disabilities, how much better you are than "most people" in your situation, and even when it's the last thing you want to do, there is a part of you that buys into it.

There was a part of me, when I was young, that believed I was distinguishably different from other people with disabilities, because I was constantly told that difference was obvious and important. One of the first major breakthroughs I had in becoming a political person was understanding that there was a part of me that hated being associated with "that." That I had been taught to hate that is no excuse for not knowing that it's wrong. That I have friends who are associated with that, and I understand that is also unfair, and that I do not inherently deserve to be treated better or have more than them, does not wash away the fact that I inherently believed myself superior, or exactly why there is a vested interest in this kind of divide and conquer.

So, for all I know, it's a matter of the nuances of translation. Maybe this woman does not want to see herself as a person with a disability because she, like me, sees the stupidity of beginning a personal identity with a negative. Because she understands that our definition of those terms are drastically different from that of the larger world outside us and our experiences. Or maybe its just the enabled way of speaking, the same kind of idiocy involved in the encouragement to "overcome" our disabilities.

But as someone who has spent years denying that part of herself, for very good and very practical reasons, which can feel horribly necessary and are in fact entirely futile, it bothers me to think of all the people who think the best thing they can do for themselves is to separate a large part of their experience and understanding of the world out of themselves, like some kind of exorcism. At least while they're in public.

I am not ashamed or afraid of being a person with a disability. I can admit to being afraid to be identified that way by other people. It's not the part of me I like best in the world, but I tend not to hate it as much as other people do. I'm not the one who sees this as a negative trait. It worries me how many people I might have a lot in common with, are being told that in order to succeed, they must think themselves better than me. It hurts me when I think I might buy into it. I work hard to make sure I remember every day, that I, like millions of others, am a person with a disability. That this body, on its own, is not a punishment or something that needs to be removed from the core of my being. And unfortunately, all I can do is hope that other people understand that. Because I've said it before and I'll say it again:

It is not our job to make you okay with this.

Tuesday, October 8, 2013

In which I have a terrible experience with a shrink and think about magic

Content warning: This post discusses suicide and suicide idealization.

I'm still talking about mental illness.

I feel like I've been doing this a lot lately, and that bugs me, because a) that is not what this blog is about, and b) because I don't like talking about it. I am talked out of it. I am exhausted. It runs around my head all day long. I don't want to talk about it. But. This is where I am right now. So.

Oct 6-13 is Mental Health Awareness week in the States (I think ours is actually in May.) so there's a lot going around about it. And while I think it's important to encourage your friends and loved ones to get help, and to offer support, I've been getting a lot of encouragement and support myself. Some good, some... not so much. So, because I like to do things the difficult way, I thought I would write all this up to explain to anyone who might be interested why "getting help" is not what you mentally healthy people might think it is.

Let me clear this up, first off. I LIKE most of the psychiatrists I've ever had. My first shrink was when I was seventeen, he was a nice man who gave me a diagnosis, who spoke in a frank, honest way, which I, of course, adored him for, and who knew things about me and how my brain processed things that I did not, which, even at the age of seventeen, was rare enough to be very fucking important to me.

My next psychiatrist was not so much my psychiatrist as the psychiatrist of the clinic I went to see my counselor at. I have a lot of respect for her. She is ALSO a no-nonsense sort of person, in fact, my last breakdown she asked why I had come to see her, and I said, quite honestly, that I was there because the counselor, and my mother, wanted me to be there. She said, "I think they have a point, but I'm not going to be able to help you. Come back when you're ready." She has told me many things I do not like, and there are some things we disagree on, but I know her enough to know she does not suck at her job, and so I go to her when I need something. These two experiences have led me to believe that while yes, there are problems with psychiatrists, that psychiatrists are not the over-educated non-thinkers that doctors usually are. Except now, I live in a different area. So the other day I met with a shrink. And he really did suck at his job.

So, after cancelling 45 min before the meeting out of nerves, I went anyway. I was in tears and shaking, and still scared. I'd been to this agency twice before and had two horrible experiences. But I did the right thing, told the doctor everything that had been going on. He asked all the usual intake questions. How old are you? How long have you been depressed? Do you have a family history? I stopped there, and detailed my family's history. So that when we get to Are you on illicit drugs? I tell him I've never touched the stuff, and he says "good." which is different, but doesn't surprise me. However, he asks me how far in my education I've gotten. I tell him some college, before stuff happened, and university which I'm still finishing. He stops.

 "You finished high school?" He asks.


"Wow. That's very impressive. Good for you." Okay that one was weird. I let it go. He asks me how bad it is really. I give him the standard spiel, no I am not suicidal, yes, I think about dying all the time, no, my last active attempt I was 17, and I gave up on it as soon as I had a diagnosis. I don't want to kill myself, it's messy, and I would probably mess it up. At which point he gets up, calls in someone else, who sits with us while he explains they are sending me to hospital, legally they have to, blah blah blah. He doesn't know I know he's bluffing.

Instantly, the tears stop. "I will not be going to hospital." I say. "You do not want to see what happens to me when I am in a hospital. A hospital is not a place of healing, for me. Plus I've got an essay to finish, and three pets to take care of." He insists that legally he must see me hospitalized, as he considers me high risk. His reasoning? I live alone.

We battled for about twenty minutes, and eventually, come up with Plan B. He says their crisis team will call on me this evening and tomorrow morning. I remind him again I've felt like this for months, I'm not sure what he thinks he is doing (false: I know exactly what he thinks he's doing, I just can't wrap my head around how he thinks its helping.) He tells me, "if you don't answer, they are obligated to call 911 and you will go to hospital." so that I agree. The other shrink, the one he dragged in after the fact, asks me on the way out, "does this sound like a good plan?" I tell him no, it does not, but I'll do it.

So then I spend a whole evening scared to use my phone, in case they call. Then they call and tell me the crisis workers will come tomorrow, I say no, that's not right, I have meetings tomorrow, they say, "That was the deal you made." I retort, because I am exhausted,

"It doesn't surprise me he'd leave that out, given the fact that he's already lied twice in one intake." She tries to backpedal, "well, if you really can't do it..." and I interject with, "no, no. He said if I don't do whatever he says for the next week, I go to hospital. So I will do it. but you better make it in the morning, because I've got a meeting in the afternoon."

So they show up in the morning, and ask me what I hope to get out of our time together, where I sweetly remind them I am here on threat of a hospital stay. The first crisis worker is actually the second shrink from my intake, and he tells me, gently, that it's not so much a threat, just a plan for my care.

"I don't care how well-intentioned it is," I reply, "'Do this or I will cause something unpleasant for you' is a threat even when you don't have an anxiety disorder." He concedes the point. We chat for a bit about my pets, all three of whom are running around, Sophie especially, since I haven't stopped crying for more than two minutes, and several groups that will be no help to me. We talk about the assumptions people make about people like me, and the financial problems I am struggling with, and at some point, I complain about the assumption the first shrink made about my education. I cry some more. They leave. I fall asleep and then head out to my appointment. The appointment is about job-hunting, and I come home in a much better mood then I was when I left.

Today, I had my follow up meeting with the shrink. Initially, I just wanted to lecture him about what happens when people are dishonest with me, and tell him the medication he perscribed left me so sick I could not get out of bed for three days. But then we got to chatting, and things kind of... got away from me.

In the first place, he keeps talking about how angry I must be, and how I am struggling with CP in addition to everything else, and at one point, he even says "I can understand how that must feel." Which I tell him is nonsense, that all he knows is that it feels bad, and that is not the same thing. Then he tells me repeatedly how smart I am, and how no one can force me into treatment- and I break off to tell him,

"That's not what you said last week."

"yes well, uh. Legally we can force you if you're suicidal. Are you suicidal?"

"I wasn't last week, and I'm not this week."

"Well uh, I can't force you, but you're smart enough to know-" and then I got it. And oh my God, it took every ounce of self-control not to laugh in his face.

"I'm smarter than you're giving me credit for." I reply.

"Oh, no, I know you're smart-"

"No, see, last week, you didn't know I was smart. Last week you were amazed I had graduated high school, and last week you were also threatening me with enforced hospital stay because you didn't know I was smart enough to know you couldn't do that. This week, after consulting with your colleague, you realized both those mistakes, so suddenly, I am 'so smart' and you can't force me. Now, how am I supposed to trust you when your method of helping me involves telling me whatever you think I want to hear so that I'll do whatever you tell me?" At which point his mouth clamps shut.

"I really do want to help you." He says finally.

"I really don't think you can."

"Think about it, for a while."

"I've had a week." At which point he sighs,

"Okay," He says, "We're here if you change your mind." And with that, I left, still furious.

It's a bit of a Pyrrhic victory, to be honest. I really do want to get help. But regardless what the idiot psychiatrist thinks, he does not know what it is to deal with "CP and this other stuff," because if he did, he would understand the exceedingly long history of people offering help you don't actually need because what you're asking for is beyond them, and then getting mad that you won't accept that as actual help. He might have known that dishonesty is one of my major phobias, since, as is stated on my medical record, I can be very easily taken in by lying, thanks to vision comprehension issues between my brain and eyes, and that most people with CP, regardless of communicative and educational challenges are of higher-than-average intelligence. He may have even known that the reason I didn't fill out the sleeping pill prescription that came with the antidepressants last week was because ODSP's drug card doesn't cover it. If he had in fact been listening, he might also have known that the particular drug he was prescribing was one in the family of drugs that has always made me nauseous, and that I have already tried talk therapy, CBT, and occupational therapy, and that I had only agreed to this assessment because the woman who told me to come here, after three separate disasters at this same agency, over the phone and in person, had promised they would be willing to try something else.

I know I'm not a genius or anything. But it is very hard to find a doctor, any kind of doctor, who is smarter than I am. Not because I know more so much as because of their assumption that I know so much less. And I'm not going to get help from a doctor I can run intellectual rings around because someone decides to dumb themselves down for my benefit. It's like that episode of House where he's being forced into rehab, and realizes he's not scared because he will always be able to cheat. Psychiatry is like a magic show. You go in knowing you are about to be manipulated into believing something that is not real. You go in because you know you want to believe. And, like a magic show, you don't want to see how the trick is done, or it won't work. I've been at this since I was seventeen. All I can see anymore, is how the trick is done.

One of the things that always gets assumed when I'm having one of my down spirals is that I am lonely. My mother says it often, so do the shrinks and the counselors. It's almost a cruel joke, because it's true, just not the way people think it's true. They think I should get out more, talk to people, make connections. They assume this is possible, in the way they assume that knowing someone wants to help is as comforting as actually getting help. I'm not lonely because I don't have anyone. I'm lonely because everything I do, I have to do it on my own. In my own way, in my own time, and usually, separate from everyone else. And every time someone tries to help, all I can see is where the rabbit is hidden, or how the rope isn't really knotted. And what can you do, really? Of all the many people suffering depression, what do you do when it actually is that bad, when nobody can offer anything you can't see through?

I'm not asking for a miracle cure. And I know most people don't understand this, and I accept that. But it would be nice to have someone who knew something about me, and about this, that I didn't. When I was seventeen, having that, just the one time, literally saved my life. But it doesn't seem likely anymore. And when I was seventeen, I was so relieved to know, that I couldn't understand why anyone would refuse treatment. I miss being that child. I would give anything to not know, all over again.