Tag Archives: neurodiversity

Guest Post: I Do Not Suffer From Autism

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.

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

Recommended Reading for Friday, 14 May 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

A kiteboarder on the water with what appears to be an above the knee amputation of the left leg.

Photo by Flickr user Deadly Tedly, Creative Commons License.

Astrid at Astrid’s Journal: Autism and Mental Illness

But why should it matter at all? Of course, sometimes, the misconception that autism is a mental illness leads to inappropriate treatment, such as unwarranted drugging, and it is rather necessary that the two be distinguished then. But when the only aim is acceptance for autistics, it should not make a difference. People with mental illness deserve and strive for as much acceptance, after all.

NPR: The Impact of War

This is the landing page for an ongoing series by NPR with both transcripts and audio available. I’d highly recommend the whole series, but ‘Disabled Veterans Face A Faceless Bureaucracy‘ may be particularly relevant to your interests; here’s a pullquote:

The number of outstanding claims at the VA for service-related disabilities — amputations, injured limbs, PTSD, brain trauma — hovers around 500,000. Nearly 40 percent of those have been waiting on a decision for more than four months.

And to make matters worse, another 100,000 claims are waiting for a decision at the Board of Veterans Appeals. The department has responded by hiring thousands of new claims adjudicators, a kind of brute force approach.

Snarky’s Machine: 20th Century Boy

What I found tragic was not their respective disabilities, which I’m sure presented challenges to them, but the way in which their bodies were suddenly appropriate for public discourse and each was suddenly defined by what their bodies could no longer do in a way I found diminished their continuing talents and contributions in their area of excellence. Their lives were not really theirs anymore and their bodies were expected to be everyone else’s educational opportunity.

Steve Schultze and Meg Kissinger at the Journal Sentinel: Supervisors call for firing of county mental health chief [Content warning: Rape, sexual assault, institutionalisation. Editorial comment: What. The. Fuck?!]

Three Milwaukee County supervisors turned up the heat Monday on the county’s top mental health official, calling for the firing of John Chianelli over mishandling of patient assaults.

Their remarks follow a report Sunday in the Journal Sentinel in which Chianelli defended housing female patients with dangerous male patients to quell male-on-male violence, according to written account by Supervisor Lynne De Bruin. Chianelli called it a trade-off that resulted in more sexual assaults of female patients, according to De Bruin and two other supervisors.

Hazel Dooney at Self Vs. Self: After the Crash, Part One [Content Warning, graphic description of a car crash, being trapped in wreckage]

What drove me to a break down last year weren’t the rigours of making art (although, I concede, the toxic enamel I used was enormously detrimental to my physical health). Rather, it was always trying to do what others – family, friends, doctors, even collectors – kept telling me was ‘right’.

Cynthia Hubert at the Sacramento Bee: Groups sue Sacramento County to halt mental health cuts

The lawsuit seeking class-action status, filed Thursday in U.S. District Court in Sacramento, contends the cuts violate various state and federal laws, including the Americans with Disabilities Act, and would be devastating to patients.

If the services are eliminated as planned on June 30, thousands of severely, chronically mentally ill people “will inevitably be exposed to increased harm of injury and death,” the lawsuit claims.

NPR1: Prudent Mabhena: Out Of Struggle, A Soaring Voice

“These children get locked away,” Williams says. “They’re hidden from the rest of society because the families are ashamed of them.”

Mabhena was born with arthrogryposis, a condition that deforms the joints; it has cost her both of her legs, and makes it difficult for her to use her arms. When she was born, her father’s mother advised her mother not to nurse her. After her parents abandoned her, she was cared for by her maternal grandmother, a rural farmer who kept Mabhena at her side as she worked.

  1. Ok I am sorry about two NPR links in one recommended reading but I’ve been saving these up all week. No, I do not own a Volvo. I swear. I don’t even have a tote bag!

Do you REALLY trust women?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.