Category Archives: identity
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.
I do not suffer from autism.
I suffer when someone calls my way of being a disorder.
I suffer when others invest time and money to prevent people like me from being born.
I suffer when anyone suggests that I might recover or be cured.
I suffer when others feel sorry for me or for the family I have created.
I suffer when I fear that people will consider me broken.
I suffer when my being autistic scares people away.
I suffer when others try to silence me.
I suffer when people suggest that I do not have all the same feelings they do.
I suffer because I must describe my way of being by referring to a medical diagnosis.
I suffer because I live in a society that does not celebrate difference.
I suffer because I live in a culture that does not cultivate sensitivity.
I suffer because I live in an environment that values appearance over substance.
I suffer because I live within a social order that calculates human worth based on productivity and conformity.
I suffer because I live in a world that does not honor the gifts that autism brings me.
I suffer because I have learned to apologize for who I am.
But make no mistake: I do not suffer from autism. I do not suffer from who I am.
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Depending on where in the world you are, your nation may be celebrating Veterans Day, Armistice Day, or Remembrance Day today (or yesterday, for those living IN THE FUTURE); I happen to be in the United States at the moment, where we are observing Veterans Day.
There’s a thing I notice, in narratives about veterans. Only certain people are depicted as veterans of military service, while others tend to be erased. Going on statistics for just one service branch (warning, .pdf), the United States Army, I can tell you that 17.2% of the commissioned officers serving are women. 20.9% of enlisted people on active duty are Black. 2.1% of the Army National Guard is Asian.
But I keep coming back to the women, because when I see images meant to evoke military service and veterans, I see a sea of men. I come from a military family, a mixture of men and women (primarily Navy), and to me, the face of the military is not a white man. Yet, to many, it is; take, for example, the Facebook meme making the rounds right now encouraging people to replace their profile pictures with the face of a veteran. I know several women veterans who have received messages about this meme.
They were not amused.
Women serve. Women are serving. Women have served. Throughout history.
And women become disabled as a result of their military service.
In the past week, National Public Radio has reported on two different issues facing women veterans, particularly disabled women, both illustrating the fact that the Veterans Administration is not serving our women veterans adequately.
Women veterans experience psychological trauma and physical trauma. In addition to the signature tramautic brain injuries of Iraq and Afghanistan, one in five military women faces sexual assault and many women veterans are also coming home with mental illnesses. Skyrocketing numbers of women veterans are homeless and struggling on inadequate medical care and benefits. Many VA centres don’t provide women’s health care services and there are tremendous disparities in health care for women in the military as well as veterans.
But, the military, and the veterans system, was originally built by and for men. That legacy frustrates Kim Rushing, a 20-year veteran of the Navy. From her wheelchair, she scoffs at tables piled with olive drab long johns.
“All this stuff, is all men’s stuff,” she says. “I’m a woman and I served my country, and that’s what I get, is men’s stuff.” (‘Veterans Affairs Scrambles To Serve Female Veterans‘)
Rushing isn’t alone. Women, and their service, are erased and continue to be erased. Because women aren’t officially allowed to serve in combat positions, they aren’t eligible for combat medals, even when they are in combat, for example. But this is about more than medals. This is about a fundamental breakdown in the health care system for female veterans, especially women who are now disabled and served in the military with the understanding that the military would take care of them; this is the exchange, for service, to be provided with care.
Ending up on the streets is a common fate for veterans due to lack of support, and it’s especially stark for women.
Over the past decade, the number of female veterans who have become homeless has nearly doubled to roughly 6,500, according to the Department of Veterans Affairs. Most of them are younger than 35. (‘No Place To Call Home For Many Female Veterans‘)
Many of these women also have mental illnesses, a legacy of their military service. Post traumatic stress disorder (PTSD) is notoriously underdiagnosed in women, which means that homeless women veterans may also be living without diagnoses and access to medical treatment that meets their needs. This is a travesty.
Writing on this ain’t livin’ today, I said:
I never knew my grandfather. I will never know his war stories because he never told them. I don’t need to know them; I don’t need to know anyone’s war stories, I don’t need to know what people saw and did to honour them. I don’t need to know someone’s politics, I don’t need to know why someone joined the military, I don’t need to know what people think about what they did in the course of their military service. None of this information is my business or is relevant to my own experiences and in this country, where the experiences of others are asserted as property by people who have not lived them, this attitude seems to upset or disturb people, that some things are private and demands to lay them out for inspection are not welcome.
This I do know: That women who have served in the United States military are not getting the things they were promised in exchange for their service. That women serving in the military now face restrictions to access for basic medical care. And that I don’t need to know their names or their stories to know that this is wrong.
Veterans Day here in the United States serves as a reminder to thank all those who served, like Ouyang Dan, who writes here, those who are serving, those who gave their lives in service, although of course you can thank a veteran any time.
It’s, for me, also a reminder that my work, of centreing marginalised experiences; refusing to allow people who experience oppression to be erased; and pushing for equal access in all areas of life for all of us, is never done.
As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.
I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.
With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.
At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.
Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?
Dorianisms – A Different Kind of Coming Out
Today is (Inter)national Coming Out Day. It happens on October 11th every year, and I think it’s a really cool initiative. Visibility is important, for one thing. And sometimes, people find it easier to come out knowing that other folks, all over the country or the world, will be doing the same thing at the same time. Acting with a group is a powerful thing, and I think this day attempts to harness that power in what is really a very positive way. So, with the above in mind, I’m coming out. Not as queer—I really think that’s something most, if not all, of you have been aware of for a long time. I’ve been out about my sexuality to basically everyone since…geez, since I was in eleventh grade. That is, for those of you keeping track, somewhere in the neighbourhood of five years ago now. That’s a long time. This coming out is a bit of a different one, though probably still not a surprise if you’ve been paying ANY kind of attention to the things I write and the things I link. I am a person with disabilities.
The World Health Organization says more than 75 percent of people with mental, neurological and substance use disorders living in developing countries do not receive any treatment or care. WHO Director-General Margaret Chan says people in poor countries miss out on care because it is generally believed that sophisticated and expensive technologies are essential in improving mental health. “In other words, we face a misperception that mental health care is a luxury item, a luxury item on the health agenda … It costs two dollars per person per year,” Chan explained. “It is one of the best buys you can get. High profile disease always get the attention and mental disorders are disorders that people often do not talk about, brush aside, sweep under the carpet.”
AFL-CIO Blog: Actors with Disabilities All But Invisible on TV
About one in eight Americans is disabled, but you wouldn’t know it from watching TV. In the new fall TV season, only six characters out of 587, about 1 percent, will have a disability. Even more amazing is that only one of those actors has a disability in real life. October is National Disability Employment Awareness Month and a new report shows persons with disabilities are all but invisible on the nation’s five broadcast networks— ABC, CBS, The CW, Fox and NBC. That also means there are few opportunities for actors with disabilities to be cast.
cripchick – Happy Disability History Month
I want to talk about why disability looks white. I want us to understand how ableism has been leveraged against communities of color with black folks historically being thought of as less capable (therefore fit for slavery) and special education commonly serving as a means of segregating students of color both with and without disabilities. I want us to create a disability pride that acknowledges the complexities of our experience and does not pit living resiliently and proudly against the knowledge that disability is often created by injustice our communities face. All of this must be done without flattening our differences, without saying being disabled is just like being of color, just like being poor, just like being queer. Let us bring our best selves to community and learn to be with each other in ways that transform and grow who we are, even when (and though) the work is hard.
Huffington Post – Psychiatry and the Media: A Strange and Strained Relationship
As a practicing child and adolescent psychiatrist for almost 30 years, I cannot believe the major role sensationalism plays in determining what gets published in the popular media about mental illness and its treatment, especially concerning children. Recent examples include the September 2, 2010 New York Times front page article, “Child’s Ordeal Reveals Risks of Psychiatric Drugs in Young,” the September 8, 2010 piece in the Huffington Post, “Psychotropic Drugs, Our Children and Our Pill-Crazed Society” and the September 23, 2010 Huffington Post’s, “Making a Market in Antipsychotic Drugs: An Ironic Tragedy.” Where is the balanced approach to journalism that the public is entitled to expect from a free press? Most people get a substantial amount of their knowledge from what the media chooses to print, and sadly what is disseminated these days is often quite biased. Frequently, it is the off center, brash, highly emotional and clearly outrageous stories and/or the unorthodox physicians or therapists who write them or serve as their sources which make headlines much more than those with more reasonable views and approaches.
Denver Post – Movie Review: ‘It’s Kind of a Funny Story‘
“It’s Kind of a Funny Story,” based on the first-person novel by Ned Vizzini, follows bright, depressed Craig Gilner (Keir Gilchrist) as he checks into the psych ward of a Manhattan hospital. He’s having suicidal thoughts. But as he hands his shoe laces over to an orderly, he’s having second thoughts. Yes, he’s blue. He’s has a crush on his best friend’s girl (Zoë Kravitz). He’s blocked about writing an essay for a prestigious summer school gig. Yes, he’s part of the Zoloft nation. But does he really belong on Three North among a population of wounded, idiosyncratic characters? How to explore mental illness — particularly depression — without cheating on the pain people face and keeping the wry energy of the book? It’s a balancing act that filmmakers Anna Boden and Ryan Fleck don’t quite pull off.
“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis. This article is about why I am finally OK with that.
First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors. Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy. Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome. Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).
I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.” Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns. You might get a diagnosis that is wrong. You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely. I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me. I am not advocating giving up hope: I am advocating having realistic expectations about the medical system. Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable. Years later, I am basically in the same state of health that I was when I first got sick.
I have reached a place where I am quite comfortable not having a diagnosis. I’m sure the medical system does not agree with nor support this stance. Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?
I say about myself that I have chronic pain and illness. I have a disability. If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life. Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand. People understand things like migraines, like diabetes or anemia.
There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness. I could perhaps find support groups populated by people with my same illness. I could perhaps get government disability benefits. These things are not impossible to get without a diagnosis, but they are harder to find. There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.
But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity. Right here are the tools I need to help me live a life with pain and illness. Here is a supportive community, coping techniques, theory, friends. A person doesn’t necessarily need a diagnosis to live here. ?
Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.
So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.
When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.
In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.
This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.
So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.
This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.
Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?
Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.
And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.
Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.
I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.
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Joesphine King is an artist with bipolar disorder who produces startling and evocative self portraits.
Josephine King remembers her first self-portrait and how it showed up out of nowhere. She was “really ill” with bipolar disorder, living alone in a flat in Amsterdam. “I was in psychosis. I was desperate, not at all well in my head. I thought, the only thing to do is a painting.” She worked until a woman emerged against a brilliant pink background. This was the painting that launched five years of obsessive self-portraiture, framed with texts spelling out what it is to be manic depressive. (source)
Originally establishing herself as an artist in ceramics, she turned to portraiture after her diagnosis in 1999.
Each portrait tells a little piece of her story. I really love her use of colour, textures, and shapes and I like that while each picture stands on its own really well, they can also be viewed together as part of a larger narrative about her life and her disability.