Daily Archives: 27 October, 2009

Why I Identify As Disabled

For a long time, I’ve struggled with whether or not to identify as ‘disabled’ (or as a ‘person with a disability.’) It’s only very recently that I’ve identified myself that way in my own thoughts, and even more recently that I’ve begun identifying that way publicly. (As in, my name listed as a contributor to this blog was pretty much my first public identification as a person with a disability.) Because I know a lot of other people who are unsure if they qualify as a person with a disability or are reluctant to identify as such, I thought it might be relevant to talk about some of my hesitations to identify this way and what finally convinced me that I do identify that way and why it was important to me to do so publicly.

My first reluctance came from what seems to be a very common concern – I did not think I was disabled ‘enough’ to identify as a person with a disability. At this point in my life, my disability is fairly well managed by medication and the approximately 900 million hours of therapy I’ve been through. My psychiatrist sees me once every 12 months to check on my blood levels and spend 10 minutes with me checking in, and other than that, I’m totally disengaged from the mental health care system. (Except for the pharmacy.) To everyone except those who know me extremely well, I pass as neurotypical. I work full time at a professional job. I live independently and manage my own household and finances. I often have days where the only thing relevant to my disability is the 30 seconds at night when I take my pills.  Surely I cannot be disabled!

But I realized that view erases the very real aspects of my disability that I continue to experience. The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now. And the cyclical nature of many mental health disabilities means that while I’m at a relative peak now, I could find myself in a deep trough at any time. And there are limitations involved even with the minimal treatment I’m receiving – I have to make sure I have a dose of meds with me in case I sleep at a friends’ one night, I have to deal with the punishing withdrawal symptoms when I forget to take a dose on evening, I have the dry mouth and the flaky skin and the lump of belly fat that are side effects of one of my meds. (And there’s my monthly tangle with the pharmacy refill system.)

More importantly, I know that if I tell anyone my diagnosis, if they find out about the hospitalization or the 900 million hours of therapy or the meds I’m taking now, I change in their eyes. It’s easier for them to dismiss my emotions as an artifact of my disorder and thus irrelevant. It’s easier for them to patronize me because they assume I’m not capable of taking care of myself. However I think of myself, I know they will think of me as a person with a disability. (Actually, I suspect many of them would think of me as a “crazy bitch.”)

I’ve also struggled with identifying as a person with a disability because of the split between mental and physical disabilities. Even when I began identifying as a person with a mental health disorder, I still didn’t think of that as being a person with a disability. I thought people with physical disabilities focused mainly on physical access issues, which weren’t at all relevant to me. I don’t need reserved parking spaces, I can walk up stairs, I don’t need a special restroom.

Then I realized how artificial the distinction is between mental and physical disabilities. When I have a panic attack, it affects me physically. When I am depressed, I have no energy and I can’t walk up stairs. I also realized the enormous overlap – lots of people have both mental and physical disabilities, and it’s common for the treatments for physical disabilities (like narcotic painkillers) to have cognitive effects. I also started talking to people with physical disabilities and heard them concerned with much more than physical access which, while very important, is not the sole focus.

All of that is not why I began identifying as a person with a disability, though. I thought of myself as an individual struggling with a very specific and individualized problem. I know other people with the same diagnosis as me, and all of us have had very different experiences and very different approaches to treatment. So I thought of myself as an exceptionally special snowflake that had some exceptionally special difficulties for me to go through, difficulties that nobody else had or would experience. So I thought about my mental health issues as they affected me personally, how they had changed my life, how they had made me the person I am today. But because they were so inherently unique, because nobody had gone through exactly what I’d gone through, I tended to think of my disorder not even in terms of my diagnosis, but in terms of “the very special snowflake disorder that only applies to me.”

Thinking of it that way meant that all the negative reactions I got, all the judgments I got, all the dismissals and marginalizations and refusals to take me seriously, all the hoops I had to jump through to get what other people had – they were just about me. Personally. They were not about how people responded to mental health problems, they were not about how people respond to and discriminate against people with disabilities as a group, they were about ME. I had brought them upon myself because of my disordered behavior, because my special snowflake-ness was so annoying or intolerable that people had no choice but to write me off.

Amandaw recently told me that she thought of disability as a political identity and I strongly agree. Thinking of myself as part of a group of people who routinely encountered oppression on the basis of their disabilities meant that the reactions I got, the disregard, the disgust thinly veiled as pity, the refusal to deal with my emotions and ideas – that wasn’t because of me. That was because I was part of a group subjected to systemic and institutionalized discrimination and oppression. And it was wrong. But it wasn’t until I started thinking of myself as part of that group and thinking about how these systems affected all of us that I needed a term for “people who are discriminated against or oppressed by our culture and institutions in the same way I am.” It wasn’t until I started thinking of it as a group issue, rather than an individual issue, that I needed a word for that group.

These systems that oppress us don’t care one whit about my special snowflake-ness. They don’t care about how well I’m doing now. These systems exclude and marginalize and dismiss and mock me based on my disability status without taking into account any of the individual variations in my life and my disability. And when I hear a caseworker explain that “you can always tell who is crazy because they live in cardboard boxes and tell people it’s a palace and they’re the king,” it feels like a slap in the face whether or not she knows I’m disabled. It’s about the systems, the institutionalized attitudes. It’s not about me.

Even after realizing all of this, I was still reluctant to identify publicly as a person with a disability. I would share details of my mental health history and the effects of my mental health conditions, but I still wouldn’t come out and identify myself as a person with a disability. At least, until I began talking and working with the amazing women who are my co-contributors on this blog. Because that’s when I realized that identifying publicly gave me power. Gave us power. Allowed us to come together as women who experience oppression and discrimination on the basis of our disabilities. Allowed us to work together to identify and address these problems, to find others affected in the same way, and to come together to try to change things. Thinking of myself as a super special snowflake made that kind of collaboration and support impossible, because nobody could be in my special snowflake group with me.

So while I’ll always think of myself as a pretty damn special snowflake, I also now think of myself as a woman with a disability. And identifying that way has allowed me access to power and support that I don’t think I could have found otherwise.

Note: I’m going to moderate this comment thread with a heavy hand to ensure that there is absolutely no policing of disability. If I self-identify as a person with a disability, I do not owe you the information of my diagnosis, my health history, or my therapy records to ‘prove’ that I am disabled. Similarly, I will respect how others self-identify if they are doing so in good faith and expect other commenters to do the same.

Guest Post: Why I Say I’m Okay

Arwyn lives in the United States’ Pacific Northwest with The Man, the Boychick, bipolar type 2, and migraines. When the intersection of her neurology and the kyriarchal society she lives in allows, she writes feminist thoughts inspired by parenting a presumably-straight white probably-male at Raising My Boychick.

Arwyn previously wrote a guest post for us: Why I didn’t celebrate World Mental Health Day.

I am a very out person about my mood disorder. I wrote about it and talked about it in all my college applications and interviews; I mention it to everyone I know whenever relevant (and it often is); it’s in my bio here and on most social networking sites. I am an advocate for openness, for honesty, for forthrightness, for being out and proud as a person with a “mental illness.”

And yet, if you ask me how I am on any given day — even today, even when my sanity and stability are more potential and historical than current and actual –, I’ll probably say I’m OK. If you’re close to me, I might also tell you what’s going on today; if you know my mood history, I might tell you how else I’ve been feeling recently. But whether with a “more or less” appended to it or not, I will start with, and likely end with, “I’m OK.”

Why?

It is an affirmation; a statement of intention; a prayer to the universe. The more I say it, the more true it is likely to be — and oh do I want it to be. I need it to be.

It is a philosophical statement. Fundamentally, I am OK. I am privileged to have a comparatively easy life, with an understanding partner, a beautiful shining child, and the resources to do most of the things I need to do to be OK in the long run.

It is a temporal anomaly. I live in the moment; most of the time, I try to remember that, and it is especially important to do so when I my mood has not been stable. When you ask how I am, if you are worthy of an honest answer, I take a deep breath, center myself, and probably find that in this moment, I am OK. Stable? Not so much, but stability is a product of well-being over time: in the now when you ask me, I am OK (if you are a person who cares about me, you asking and caring about the answer may be enough for me to be OK in that moment). Now is all I ever have; now’s okayness may be the only answer you will get.

And, it is protection. I do not always have the spoons to let my mask down, to let you in — even if you love me and I love you –, to get into all the ways I might not be completely OK. Answering any other way might make me not OK, and frankly I’m tired of being unwell — bone-deep, wish-I-could-weep, wanna-sleep-until-it-goes-away-for-keeps tired of it.

None of these should give you the feeling you have any right to a different answer; none of these should leave you thinking “I should just push harder, she’ll let her guard down and admit her damage if I just say ‘really?’ skeptically enough.” I will tell you I might answer differently to “how’ve you been?” or “how’s life going?” or “how has that blighter bipolar been treating you today?” But I might not.

I have the right to be OK; you do not have the right to demand the laundry list of all the ways I’ve fucked up today. Talk with me: I’m an open kind of gal, and if I’m up to it and you’re open to it, odds are good you’ll eventually hear all about what’s been going on with me. But if we’ve just started talking, and you ask how I am? If you love me, if you purport to care about me at all, let me say I’m OK, and let that be enough for you.

Recommended Reading for October 27

I’m writing this four days before you’ll see it. (I write most of my posts from the past, due to my schedule.) I mention this so people know that I’m not ignoring recent posts, I’m just not seeing them yet.

Disability & Desire: The Dance of the Heart – This is a pointer link. The actual article is PDF.

From the article:

In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My partner at the time, Janine Clayton, and I were caught up in local taxi violence in Cape Town, South Africa, with members of rival taxi organisations firing at each other. The driver of the taxi we were in died, and my spine was severed by a bullet. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was my conviction that I would never be desired or loved again. I felt that my body had become damaged goods, my sexuality erased.

As time went by, I began to dismantle my perceptions by analsying their origins. I recognised that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities … these were people who were mostly invisible, unless as beggars on the street or patients

When Simply Stating Your Truth Isn’t Enough:

What matters, then, is what you do with what you call facts, experiences, truths and ideas. It’s how you handle your perspectives on gender, race, ethnicity, class, and disability. It’s the way that you align the facts (or not) with societal preconceptions about those who are somehow “different.”

It doesn’t matter whether or not you, personally, don’t share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/…, you have a responsibility to treat those facts in such a way that you don’t perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.

Accessibility: The Soundtrack of my Life

We would never expect the average able bodied person to push themselves to the point of pain to participate in a public event. Whether I am watching my son play hockey or considering taking my boys to the Santa Claus parade, I must consider how much pain I am able to live with to participate. Differently abled parents are no different than able bodied parents. We want to be a part of our children’s lives and yet the barriers that exist often make this impossible.

Those that parent with a disability also bear the social stigma of being unfit. Social services has intervened on many occasions because of questions about our ability to parent. Disablism in this case is supported by concern for the children. It never occurs to many, that if the world were more accessible, that there would be no reason for concern. The fault is not with the body in question but with the makeup of the world.

Pain vs a Life:

Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life. I’d love to have both good health and the ability to pattern my life in the manner I want. I don’t. (And I would argue that none of us really do.) I live in a body that will experience pain if I try to do too much. I consider myself lucky to know about where that line lies. And sometimes I choose to push and bring extra pain meds. And sometimes I choose not to push and to be pain free. There’s no magic formula. I try to balance the life I want against what I expect the physical costs of extreme activity to be.

And, this comment was left by Amanda of Ballastexistenz and I’m just going to C&P the whole thing because it is full of good reading material:

I’d like to present some links that could be useful further reading on these topics….

The first one is from The Perorations of Lady Bracknell. She addresses some really common misconceptions about the social and medical models. Her article is useful for people new to these ideas, many people not new to them, and especially anyone who has ever believed that the social model means impairments don’t cause problems on their own, or that the medical model is the model that good medical professionals ought to use. The link is Chestnuts Roasting on an Open Fire.

Then there’s some things by a writer named Cal Montgomery. She’s cognitively and physically disabled, but has been pressured by physically disabled people to pass as purely physically disabled (the same thing happens to me sometimes). She frequently criticizes the entire concept of “invisible disability”, saying that it makes it sound like the “invisibility” is happening as a trait of the disabled person rather than a lack of understanding in the particular observer. I see very few other people tackling that idea and I think she’s absolutely correct. She talks about it in a lot of places, but her two best articles on the topic are A Hard Look At Invisible Disability and Tangled in the Invisibility Cloak.

I’ve been challenged enough (told I’m making crap up, basically) when I say that autistic people who can pass for non-autistic are usually visible if you understand what to look for, that at one point I got fed up when writing a post that dealt with that, and wrote up a detailed description of precisely what combinations of things are visible to me that are invisible to people who have no idea what to look for. (I then got criticized for writing a “DIY autie-spotting guide”, but that was absolutely not my intention. I was just trying to be concrete about something to avoid being accused of lying.) For people who have trouble imagining how something could be invisible to them but visible to people who know what to look for, this post I wrote might be useful. (Note that I use a lot of terms in it to refer to other people’s perceptions, that I would never use myself.)

If you have links you think are relevant, don’t hesitate to email me: anna@disabledfeminists.com Please note my schedule means I may not see your email for a few days.

Scooterblogging: I’m Right Here

(This was originally posted at Hoyden About Town on July 29, 2009, and has been edited for FWD)

I got a scooter just a few months ago. It’s red, and shiny, and its name is Smaug. It’s made my life vastly better. No longer do I struggle to walk the block to school pickup, and I can zip up to post a letter or get some library books or go to a shop without getting into the car then plodding along out of the carpark. My life is still very limited based on inability to cope with sitting up, noises, lights, interactions for any length of time; but the world’s accessibility has still taken a big jump for me.

Within a week or two of getting the scooter, which was within perhaps 2-3 hours of scootertime, I had my first Talking-to-my-companion-and-not-me experience.

It was a couple of weeks ago. The Lad (aged 6) and I were meandering down a suburban footpath on the way back from the postbox. We were chatting and laughing about life, and he was resting his hand on my armrest, which helps stop him getting his feet tangled under my wheels.

A woman was walking by the other way. She looked at the Lad, and said in a sickly sweet voice,

“Oh, you’re a good boy. A good, GOOD boy.”

And kept walking.

…yeah.