I am a disability-positive person. I see beauty in human diversity, and believe there is great value in the varieties of body and mind and the great wealth of experiences that ensue from those differences. That being said, I don’t always see disability through rose-colored glasses.
Depression, like chronic pain, like most chronic illness, is one of those disabilities that’s hard to live with no matter how well it is accommodated. In fact, depression is not only a chronic illness, but also a form of chronic pain. The weight that sits in my chest may be metaphorical, but the pain is real, and at times even physical.
Yes, it would be nice if I didn’t face stigma and misunderstanding, but in my own life, those problems have been relatively minor. At best, I might have been diagnosed and started medication a few years earlier. No one has ever really been cruel to me on account of my mental illness, and no one has ever taken my freedom or any other of my rights away because of it. In this, I know I am lucky.My battles are not the same ones that many disabled people face.
Depression makes it hard for me to accomplish things, have ambition, follow my dreams. It means I’m often years behind on things like routine doctor’s visits, and other things that adults are supposed to do regularly. It’s the reason I only have a B.S. at this point, not a PhD. It’s why I work part time for barely above minimum wage, and have always worked for far less than I am worth. I am lucky– very lucky!– that I have always had other resources to fall back on, and am not living in poverty. I am lucky I have not had to file for disability status– many of us with mental illness and chronic fatigue fall into the cracks in the system because we lack the energy to even do things like file the paperwork for the help we need.
But even if money arrived on a silver platter and doctor’s visits came right to my door, at least to some extent I would still be suffering, and not in a way that anyone could do anything to change. I do suffer– SUFFER– from depression. I use that terminology very deliberately. Depression hurts. Chronic fatigue hurts. They hurt most of the time. Sometimes they hurt almost unbearably. They grind me down, hold me down, wear me down. They make it a struggle to get up in the morning, to eat, to breathe– never mind things like keeping friends and finishing college. There are times– so many times– when all I can do is curl myself into a little ball around the pain and whimper. I lose a lot of time that way.
What to do? More medication? Different medication? Maybe. Each comes with its own side effects and risks, and not always obvious ones, either. A myriad of other suggestions– from polite to aggressive– beseige me constantly. They range from utter nonsense to pure common sense, from free and easy to massively expensive in money or time/energy. The one thing most of them have in common is that I lack the energy to even attempt them. At least here I’m in a holding pattern, treading water– maybe not doing well, but functioning at a level I can survive with. And that’s no small thing. I do fear losing that balance. As hard as I find life right now, I am living and breathing and moving forward. I may not be doing well, but I don’t think I could stand to be doing any worse.
All this being said, I live well with depression– really! A lot of it is luck– like I mentioned, I’ve never truly struggled financially, I have plenty of good friends, my life has been remarkably free of major tragedies and other situational causes for depression– and (believe it or not), my personality is a pretty happy one. It’s an odd combination, actually– I’m a fairly cheerful, optimistic, fun-loving, easy-laughing, moderately-positive-thinking, stop-and-smell-the-roses kind of person… who just happens to spend a lot of time in intense emotional pain over absolutely nothing at all. Depression is a really weird thing when you get right down to it. It made far more sense when I was an angsty teenager with no romantic prospects– being miserable, cynical, and bitter meshes well with clinical depression. At that point, I had no way to know I was suffering from an illness; it made sense to be unhappy. But having trouble getting up in the morning when you have a pretty awesome life is harder to understand, even when you’re the one experiencing it.
A doctor recently gave me one of those depression rating scales to fill out. Then, after talking to me, she said “You know, you have a pretty great attitude for someone who scored this high on the depression scale!” I laughed and told her “I’ve had a lot of practice.” And it’s true that the mental tools I’ve developed to help me cope make a huge difference. They don’t lessen the pain, but they allow me to keep going in spite of it. Many of them are simple practical tips– get enough sleep, eat every day, don’t make any major decision while feeling depressed– and others are more like mantras, things I wouldn’t accept anyone else saying to me but I need to hear– like “remember, your brain lies to you,” and “it’s only pain– it can’t actually kill you,” and “it won’t hurt any less if you give up and collapse, so just grit your teeth and keep going.” I suspect everyone’s the little phrases are different. Some of mine are pretty weird, too. But you tell yourself whatever you have to in order to keep going.
My body hurts. I’m tired, and tired of being in pain. I didn’t get nearly as much done today as I wanted to, although I did accomplish a fair amount. I’m not looking forward to going to bed because I know I’ll be even more tired in the morning. And I meant to spend this time catching up on writing book reviews, but oh well, I suppose I needed to write this too. I wish I had more time– no, more energy– energy in a day: the time is there, but I can’t use it.
And I can’t think of how to end this, so….
Yes, this. Very much this.
Being tired, even being exhausted, is not the same as the kind of fatigue that people with chronic illnesses are dealing with day to day. And I knew this, intellectually. But after going on steroids to treat adrenal insufficiency, and getting some stamina back, it’s like a revelation.
I haven’t really had much in the way of clinical fatigue since I got on steroids. I only feel it on my bad days, and my bad days aren’t all that bad compared to how they used to be.
I do get tired. I get exhausted. But even at my most exhausted it’s not the same.
Fatigue, when talking about in a medical sense, is more than exhaustion. It’s a sense that everything is drained from your body. You don’t just feel tired, you feel sick. Your body doesn’t work right.
I wish I could just upload the feeling into people’s heads…
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(So, it would have been nice if I could have written this for the Autism Positivity flash blog, or Blogging Against Disablism Day. But life doesn’t always work out that neatly, and I only saw the TED talk two days ago and the words to respond didn’t come to me until now. I’m tagging it for those days anyway, even if it is a week late)
So, for all of you out there wondering what we should “do” about autism, STOP. Just stop right there.
Because you shouldn’t DO anything ABOUT autism– you should do something FOR autistic PEOPLE. And what you should do first and foremost is listen.
They will tell you, in words and text and pictures, that they don’t want to be fixed, don’t need to be cured, and above all, fear being prevented.
Those who struggle to speak have thoughts and feelings and lives every bit as valid as your own. They think things like:
We are not lost.
We are not missing.
We are not a mystery.
We are not broken.
We are not incomplete.
We are not worth less than any other person.
Don’t push us away.
Don’t try to get rid of us.
Don’t try to change who we are.
If you still our hands, you stifle our voices.
If you emprison our eyes, you oppress our hearts.
If you teach us self-hatred, you keep us from our dreams.
If you try to make us just like you, you will lose us twice over, for you will destroy the person we truly are in search of a person we will never be.
…I had to leave a party today– a calm one– after less than an hour. The sound of Fifteen Voices in one house– talking, laughing– hurt me so much I felt physically ill…
…Earlier in the day, I went to a classical concert, and sketched the images that came to me with the music…
…I wouldn’t know fashionable if it bit me on the ankle…
…I am moved to tears by the beauty of car tailights…
…my hands flicker in joy at the feel of pine needles, of sea-smoothed stones, of velvet and fringes and tinsel and silk…
…I take words too literally, sometimes. I have to ask, often, if someone is joking…
…I seek out foods with interesting textures…
…I collect shiny bits of paper– shiny bits of anything, really…
…I hate shopping malls with a passion. Too much to see, hear, smell, too much, TOO MUCH TOOMUCHTOOMUCH…
…”Weirdo,” they called me in grade school. “Oddball. Freak.” The adults were more polite. “You’re so unique,” they’d say to me, “so interesting“…
In the video (and many others like it) the doctor describes a nonverbal boy who cries and screams and rocks and flails in frustration, even hitting his head, even hurting himself. Her voice is resonant with shock at the tragedy. Another boy, she says, “shuts down” when he is overwhelmed. Sure, he’s smart, but he struggles with socializing, with Making Eye Contact (the Holy Grail of Western Civilized Behavior). Her voice is rich with sympathy, with pity. She dreams of something to make these boys Normal, to make them Speak and Look and Act like herself and others like her. Maybe, she says, with coaching, the shy, withdrawn, smart boy could even… date! The audience laughs kindly, applauds politely. How nice that would be, they think.
Did the doctor (and so many others like her) ever ask these boys if they want to be normal? Whether or not they are unhappy, and if so, why?
When she talks of searching anxiously for the genes that caused their existence, does she think about how this might make them feel? (How eager we are not to have any more like YOU!)
Perhaps she knows that these boys have strengths and joys, too, but it would never occur to her that their weaknesses and struggles and flaws are every bit as human as her own, every bit as acceptable, every bit as undeserving of shame. Who among us is perfect, after all? Such a person would be truly inhuman.
I have more news for her, and for others like her.
Those people she talks about, those AFFLICTED with autism spectrum disorders… they learn and grow and laugh and love. They go to school, to college– often!– and even to grad school. They hold jobs, many of them. They fall in love, get married, have children. Yes, even those who bang their heads and flap their hands, those who didn’t speak until years after their peers. Delay does not mean inability. Atypicality is not synonymous with failure. Doing things in an unusual order or unfamiliar way doesn’t mean you can’t do them at all.
Those of us who struggle with “normal” socializing — junior high’s freaks and geeks– make deep, solid, long-lasting friendships, often with others like us. Sometimes we oddballs band together and do amazing things. You’ll find us in the chess club, and the theater groups, in musical ensembles and computer programming camps. We hang out with other minorities, with the outcasts and fat kids and bookworms and cripples and queers and those who live between cultures and feel out of place. We find strength in our struggles. We draw insight from our outsider perspective. We are often kindhearted, as we know what it feels like when others are cruel.
And many of us love our lives. Those of us who rock and wail and flee from crowds and dig our nails into our hands until we draw blood… we do not hate ourselves unless you teach us to. Being strange has as many perks and privileges as it does drawbacks. The same sensory sensitivity that makes us cry in the supermarket allows us to hear the music in a single drop of water ringing against a glass. The obsession with detail that makes us line up our pencils Just So and count every crack in the sidewalk can make for brilliant scientists, mathematicians, artists.
I don’t have an Autism Spectrum Diagnosis. I may or may not qualify for one– I still do not know.
My housemate does have a Diagnosis, and so do the majority of my friends. So do many of the children I work with professionally. I love the kids I work with. They all remind me (a little bit, in various ways) of myself.
I wouldn’t wish for any of us to be any different than we are.
I hope for more people like us in the future.
I hope for a world where we are accepted and loved, where our weaknesses are supported with compassion (not pity), our strengths are encouraged to grow and shine, and our innate value as human beings is never questioned.
Please don’t seek a cure for autism. Seek a cure for ignorance, for misunderstanding, and for intolerance.
Autism is not a disease, it is merely a difference that a minority of people are born with. Help us learn to fly, and watch us soar.