Tag Archives: identity

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 November 2, 2010

Siddharta Mukherjee for the New York Times Magazine: The Cancer Sleeper Cell

In fact, this view of cancer — as tenaciously persistent and able to regenerate after apparently disappearing — has come to occupy the very center of cancer biology. Intriguingly, for some cancers, this regenerative power appears to be driven by a specific cell type lurking within the cancer that is capable of dormancy, growth and infinite regeneration — a cancer “stem cell.”

staticnonsense at Some Assembly Required: The Abstracts of the Mind and the Schizophrenic Metaphor

One of the elements of psychosis is what is called cognitive disorganization, or formal thought disorder. This can lead the brain to think in more abstract forms. This is also where people get the idea that those with schizotypy are artistic, when we may not exactly see ourselves as such. Much like other elements of psychosis, this is heavily impacted by stress levels. Seeing as I was in an abusive relationship at the time, one that amplified all of the symptoms of my mental illnesses, one can imagine that this cognitive disorganization was also amplified.

XLII at Aceldama (Tumblr): Everyone makes me want to puke

no, helen keller jokes aren’t funny. she rose to great prominence and is a role model for all people with similar disabilities. making fun of her is making fun of us and telling us that even if we become powerful, people will just see us for our disabilities and as a joke.

NPFP Guest Poster at Raising My Boychick: Hold This Thread as I Walk Away

People try to joke with me, saying they wish they had that ability like I do. Most of the time I just laugh it off. I don’t expect them to understand. After all, if you’re not there, you can’t experience what’s going on in the world around you, right? It can’t affect you.

Right?

I wish. Unfortunately, it doesn’t work that way.

Joyojeet Pal at Yahoo! Accessibility blog: Disability in the Media: Issues for an Equitable Workplace

The canonical western cinema has followed a few dominant patterns regarding the portrayal of people with disabilities. Characters could typically be pitiable (Coming Home), burdensome (Whose life is it anyway?), sinister (Dr. Strangelove), or unable to live a successful integrated life (Gattaca). The fundamental underlying theme has been the disabled character’s maladjustment or incompatibility in the public sphere, effectively highlighting what we can be referred to as an “otherness” from the non-disabled population.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for September 14, 2010

Astrid van Woerkom at Astrid’s Journal: “Exercise For Mental Health!”

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Spilt Milk at Feministe: Fat acceptance: when kindness is activism

Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?

Clarissa at Clarissa’s Blog: Asperger’s: Daily Experiences

As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.

Cripchick at cripchick’s blog: the politics of mobility

there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.

Kim Webber at Croakey: How to boost the rural/remote health workforce? It’s not all about the dollars… [via tigtog at Hoyden About Town]

After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas.  You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).

Finally, this week — September 13-19th —  is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.

Signal Boost: Submissions Requested for the September Disability Blog Carnival

Astrid, of Astrid’s Journal, has agreed after much consideration to host the September edition of the Disability Blog Carnival, and we at FWD/Forward are enthusiastic to support that decision!

Astrid has chosen the theme “Identity”:

Think of it as broadly as you want. Posts relating to transforming identities, are of course especially welcome, as they honor both themes. Just a reminder that, even though this is a disability blog carnival, we honor intersectionality, so racial, ethnic, gender, sexual and any other type of identities also count, as long as the post is somewhat relevant to disability.

Comments can be submitted preferably here or else at the Disability Studies, Temple U. blog. The deadline for submissions will be Tuesday night, September 21 – Tuesday night your time, so don’t worry about my living in Europe. I hope to post the carnival on Friday, September 24 – whenever it suits me, my time.

We hope you will consider submitting something for the Carnival. Remember, the theme is a way to get you started, and we hope that you will interpret it to how it applies to your own situation, keeping the general spirit of intersectionality in mind.

Again, thanks to Astrid for taking this on, because without volunteers, there would be no Carnival!

Be sure, if you haven’t already, to check out the August edition of The Disability Carnival at Brilliant Mind, Broken Body, hosted by Kali.

Things That Make My Life Easier, A Reintroduction (Part 1 of 3)

A long time ago, I decided to start up a series. I lacked a catchy title, so I went with the mere truth: Things That Make My Life Easier.

What I meant by that is, of course, things that make my life with a disability easier.

Disability can introduce certain complications to a life — meaning that in reaching the same destination, a disabled person may have a bumpier, windier, more obstructed path than a nondisabled person. A disabled person may simply have more to deal with than hir nondisabled counterpart. And this is not inherent to hir condition: much of that difficulty, that obstruction, is constructed by a society that is built to suit a nondisabled person’s needs, concerns, and preferences. Some of it, to be sure, is difficulty that will never be eliminated, no matter the social context.

This means two things, things that are not at all contradictory but, in fact, must both be recognized for us to make any progress:

One, that disabled people face a great deal of difficulty that is ultimately the result of a society that cares more about the convenience of the comfortable than the comfort of the inconvenient;

And two, that disabled people may always face some amount more difficulty than their nondisabled peers due to the intrinsic nature of neurological and physiological variation.

Disability is an experience all its own. But at the same time, disability is not particularly [anything]. Disabled people are experiencing the same thing nondisabled people are, by the by: they are experiencing pleasure and experiencing pain; they are experiencing acceptance and experiencing rejection; they are experiencing stability and experiencing change. They are learning and expanding; they are teaching and demonstrating. They need food and drink, and the opportunity to get rid of bodily waste. They need shelter from the elements, a comfortable place to sit or lie. They need transport if they are mobile; they need a way to enter buildings; they need an effective method of communication with other people. They need social interaction; they need solitary time. They need intellectual stimulation; they need leisure and entertainment.

These are all things that nondisabled people need, too. They are not “special” needs. They are human needs. A core set of needs that we all share.

But these needs are not all met in the same ways.

This is the beauty of humanity, really: presented with a particular need, a set of people will take all manner of approaches, using all sorts of different resources available, finding all kinds of different ways to use them — different paths to the same end point. All paths take a toll on their travelers, while offering to those travelers certain advantages. It is up to the individual to weigh the costs and benefits of any specific way sie might take.

There is no moral weight to one path over another. That it harm none, do what you will. Whatever you are doing, so long as you harm no one else, it is good. Or, put another way: Whatever you are doing, however you are doing it, if it gets done, who the hell cares beyond that?

Next: A Reintroduction (Part 2 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Recommended Reading for June 15, 2010

dhobikikutti (DW): This is also needed: A Space In Which To Be Angry

And what I have realised is that there is a sixth component to [personal profile] zvi‘s rules, and that is that complaining about and calling out what you do not like does help, slowly, painfully, get rid of it.

Every time I see friends who make locked posts about fic that Others them, that writes appropriatively and ignorantly and dismissively and condescendingly and fetishistically about their identities, I think — there needs to be a space where this can be said.

damned_colonial (DW): Hurt/comfort and the real world [warning: derailing in comments]

Writing a short ficlet in which someone who has been abused/injured/disabled/etc is “comforted” and feels better seldom bears much relation to the reality of abuse/injury/disability/etc. Which, OK, we write a lot of unrealistic things. The problem with this one is that the idea of hurts being easily cured/comforted is one that also exists in the real world and harms real people. Almost anyone with a real-world, serious “hurt” has had people dismiss and belittle their experience on the assumption that they “should be over it by now” or that “if you just did X” the problem would go away. People are often treated badly or denied care on these grounds.

Pauline W. Chen, M.D. (New York Times): Why Patients Aren’t Getting the Shingles Vaccine

“Shingles vaccination has become a disparity issue,” Dr. Hurley added. “It’s great that this vaccine was developed and could potentially prevent a very severe disease. But we have to have a reimbursement process that coincides with these interventions. Just making these vaccines doesn’t mean that they will have a public health impact.”

Trine Tsouderos (Chicago Tribune/L.A. Times): The push and pull over a chronic fatigue syndrome study

Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.

Kjerstin Johnson at Bitch Magazine’s Sm{art} blog: Riva Lehrer’s body of art

To Lehrer, who has spina bifida, “Disability and art are natural partners. In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions…”

Recommended Reading for May 18, 2010

Pharaoh Katt at Something More Than Sides: I Dreamed That I Was Normal

I dreamed the world made sense,
That people never tried
To delve into my psyche and redefine my mind.

Gauntlet at Tumblr: Janet Street-Porter shares her thoughts on depression…

I think maybe what we are seeing here, is women who have a powerful voice in the media through their personal fame or newspaper column, sharing their experience in a way that will hopefully help to normalise the experience of mental health problems and help reduce stigma.

telesilla: 3W4DW — Day ???

I don’t need to explain to anyone why I’m on government assistance, because you know what? It’s none of anyone’s damn business.

Brendan Borrell (Los Angeles Times): Pro/Con: Time to reexamine bipolar diagnosis in children?

In a draft of the next edition of the Diagnostic and Statistical Manual of Mental Disorders — the American Psychiatric Association’s bible — a new label, temper dysregulation disorder with dysphoria, is proposed for these behaviors instead. Unlike bipolar disorder, the new label doesn’t specify that the disorder is a lifelong condition.

De’VIA

As I repeatedly told anyone who would listen to me, last weekend I went to a conference in Toronto. While there, I visited Toronto’s Deaf Culture Centre. 1

One of the exhibits at the Deaf Culture Centre was about De’VIA – Deaf View Image Art – which “specifically reflects Deaf experience and Deaf Culture.”

I’m still learning about De’VIA, as my particular studies are in nineteenth century d/Deafness. What I like about what I’ve seen is looking at art that is not only explicitly political, but is explicitly about being Deaf. In Toronto, the current exhibit is paintings of Sign Language.

As a Hearing person, I don’t want to talk too much about Deaf artists and De’VIA. Instead, for people not familiar with it, I’d like to show you some very iconic De’VIA images, and then direct you to some websites where Deaf Artists are writing about their work.

This first piece is by Ann Silver, called Deaf Identity Crayons: Then and Now.

A description follows this image
The image is of two crayon boxes. One is done in sepia tones, with “Deaf Identity Crayons” written across in an ‘old-time’ script. The crayons each have a label: Dummy; Lip Reader; Deaf & Dumb; Handicapped; Oralist; Deaf-Mute; Freak. The second box looks like the iconic Crayola-crayon box, with “Deaf Identity Crayons” written across the front. The crayons are CODA; Seeing; Deaf-Blind; Late-Deafened; Deaf American; Hard of Hearing; Signer; Deaf.

(Oralism is the techniques used to teach Deaf people to talk. CODA is Children of Deaf Adults.)

Silver’s biography is available on the Deaf Art website, but I especially love her description of her art:

My language of art has, over the years, metamorphosed from pictorial grammar to creativity and critical thinking. I turn to art (1) as an artistic expression of the Deaf Experience—i.e., culture, language, identity and heritage; (2) as a Zen meditation and an aesthetic recreation of the contemplative state in which it allows my thoughts to drift by without grasping at them; (3) as an emergency back-up whenever the English language gives me semantic anxiety; 94) as an academic study vis-à-vis Deaf Studies; and (5) as a visual weapon to deal with polemical issues and concerns such as stereotyping, inaccessibility, paternalism, inequality and discrimination on the basis of hearing status (a.k.a. audism)

Another very popular piece is this one, by Betty G. Miller, called The ASL Flag:

Description follows
Description: This is a diptych, and the two canvasses come together to show a waving flag much like the United States flag. Instead of stars again the blue square, it shows 28 white hands Signing. Between the red and white stripes of the flat, it has the following:
Oh can’t you seeee…. by dawn’s early light
what proudly…. we Deaf wave at visual beauty
we see in sign language burst in air…
no matter people hearing stare…
show proof that… Deaf and ASL still here…
oh why Deaf people opressed?
over the land of the free…. and the home of the brave…??

Again, I like Betty’s bio, but I will highlight this portion:

When asked to explain the values behind her work, Dr. Miller replied:

“Much of my work depicts the Deaf experience expressed in the most appropriate form of communication: visual art. I present the suppression, and the beauty, of Deaf Culture and American Sign Language as I see it, both in the past, and in the present. Oppression of Deaf people by hearing is actually cultural, educational, and political. Another aspect of my work shows the beauty of Deaf culture. I hope this work, and the understanding that may arise from this visual expression, will help bridge the gap between the Deaf world, and the hearing world.”

You can see images of Betty’s work, and perhaps buy a t-shirt or similar article with images on it, at Betty Gee’s cafe-press store.

I won’t say too much else here, except to link to discussions about De’VIA elsewhere.

Betty Gee’s website
Deaf Art, Deaf Artists
Deaf Culture – Deaf Art on About.Com
Deaf History Through Art – De’VIA revisited after 15 years!
Deaf Art.org

  1. Little-d deafness is the “medical” condition of not being able to hear, or hearing very little. Big-d Deafness is being a member of a cultural & linguistic minority that uses Sign Language. In English Canada, this is typically American Sign Language, although there are other Sign Languages used here.

Recognition

Y’all may know I’m mentally ill. I have mentioned a time or eighteen. It’s a thing I do, talking about my experiences with mental illness and mental health care, trying to provide an anecdote to do with the data.

What I talk about somewhat less is having cognitive variations and learning disabilities. Which I do. Most of my life I thought I didn’t. I was never evaluated for learning disabilities; I got good marks in school (some of the time). I was not evaluated for autism spectrum disorders. When I was a child ASD wasn’t a diagnosis at all. There was just autism and the perception of it was really scary: autism meant kids who didn’t talk at all and had to be put in helmets so they didn’t hurt themselves too much from banging their heads against the wall and lived in institutions. Autism definitely didn’t mean anyone like me. (Even though I did have repetitive motion behaviours — my relatives talk about it a lot as a cute baby story.) When autism spectrum disorders did become diagnoses in the U.S. I was an adult and adults are rarely evaluated for autism. Or cognitive variations. Or learning disabilities. They’re childhood things aren’t they? (Don’t those kids grow into adults?)1

It is real damn frustrating. It’s hard to start anything and harder to finish what I do start. I would love to be organised but I can’t; when I have to put something in my hands down I have to put it down now and that means wherever I’m at and not wherever that thing lives. Sometimes digits transpose when I am reading or keying or writing them and sometimes the words I read are not the words on the page but I learned a long time ago to compensate well enough no one knew. I compensated well enough I forgot I had this thing that might be dyslexia until I started paying attention to what my perceptions and thoughts were doing. I have a lot of trouble communicating in person using my voice — I don’t process speech well and I don’t speak well.

And sometimes I am just not good at thinking. (Lately this has been a lot of the time.) It’s hard to even complain about having trouble thinking to my wife. She perceives it as Moira Is Being All Negative About Herself Again and she interrupts me with “You’re not stupid. You’re one of the smartest people I know” and I’m all faaaaaaack what’s the point? and I just shut up again. I’ve had this conversation and it doesn’t go anywhere nice.

Thing is I’m not saying “I feel stupid and I don’t like myself for it.” Okay there’s some of that I wouldn’t be me without some of that but it’s more frustration at not being able to do shit what is needful. I am trying to say I feel stupid and I need help doing shit. Please. Being smart does not help me. Being able to rattle on about how cool quantum mechanics was when I finally managed to lose the distortions dualism imposes on quantum-scale stuffs and wrap my head around monist models of quantum-scale mechanics is not a useful skill in daily living. In fact being perceived as highly intelligent whilst actually having cognitive impairments has been an enormous pain in the ass. People assume because I can understand quantum mechanics and high-order differential equations (and possibly most important because I have a talent for writing) I am globally smart and can apply that intelligence to any problem needing solving. Which I can’t. But I have trouble getting help because I’m smart.

It’s more than just “Gosh Moira you should be able to do these things.” It’s also “Gosh Moira you are so smart you can’t possibly have cognitive impairments.” And people feel taken advantage of when they do help. They’ll see me do something fucking ludicrous nerdy like building a reference document for my tabletop role-playing-game using endnotes and a bibliography in compliance with The Chicago Manual of Style. I can’t blame anyone for wondering why — if I can do that — I can’t do something that. Y’know. Pays? There’s a Voice in my head saying the same thing all day every day. (Most of the time it looks like I’m working on the nerd project I actually spend not working on it. It’s just since no one’s paying me to do the nerd project no one cares if I’m reading manga instead of working.)

Only rarely do I get any farther than “I feel stupid” before I get cut off. It’s exhausting, trying to get the rest of this said and heard, so that’s usually where it stops. In text — in a blog post — I can say it all at once. Nobody has to read it all, but I can say it. There’s maybe a better chance for communication this way.

  1. On my Big-Ass List of Shit What Needs Doing is finding someone who can do that evaluation and see about official diagnosis; if nothing else it would help to have to throw at the Social Security Administration for disability stuff. But some people who have known me a long time and are not unfamiliar with autism traits have said that autism is not inconsistent with my history and my behaviour. Even if they don’t feel qualified to make a full-out diagnosis. They include my wife — who is admittedly not all that objective but it is kind of her field (one of her Master’s degrees is in psychology) — and my general practitioner (who reads up on things her patients ask about when she doesn’t know) and the therapist I’ve seen, off and on, since before I met my wife. What with there being rather a lot of spite for people who are ‘self-diagnosed’ I usually write about the traits directly and avoid the diagnostic label. But I’m reasonably confident I am actually autistic. The Bad Self-Diagnosed Autistic Person who full-out claims an autistic identity with all the negative parts that go along with and is doing it to be an enormous jerk seems to be a unicorn. But I have seen hatboxen in fora like F•rk write hatboxish shit and follow it up with “i cant help it i got teh assburgers hur hur” which is yeah appalling behaviour.

An open letter

Author’s Note: This was originally written two years ago, when I was working as a sales clerk at a boutique shop in an extremely privileged area of Los Angeles. As you will probably be able to tell, I did not like this job very much. Looking back, I’m struck that I engaged in a fair amount of body-policing in this letter–which I am not proud of–however, it was written at a time when I was extremely angry with how I was being treated, both by customers and by the shop’s owner/boss. This letter has lost much of its urgency since then, but after coming across it again (that is, fairly recently), I thought it would make an interesting post. It has been edited for clarity.

Dear Young, Privileged White Folks of [Wealthy Area],

Yes, today is one of those days where I have difficulty walking. I know, I resemble a short stork on ‘ludes when I move about on days such as today, when I am in rather extreme pain. However, this does not give you the right to stare at me.

I know that I may not have the perfect, able, taut, thin bodies and sun-kissed skin and excellent hair that you all do. I also know that despite my mildly strange way of moving about, I am human also. When you stare at me, then look away, nervous as hell and perhaps a bit inclined to smirk, it is slightly dehumanizing. I can only imagine how much worse this entire awkward situation would be if I were not white. Not just two strikes (not the L.A. version of “hot,” disabled) but three (not white, not “hot,” disabled). That would be even more of a trial, I’m sure.

I do not want your pity, your smirking, or your inclination to get the hell out of the store when I get up from my chair and hobble over to you, thinking that you might want to look at some more items and that I, rather foolishly, may be able to help and/or answer a pressing question. When you stammer a “thank you” before rushing out, it makes me wonder what I did wrong.

It all makes me wonder. The big question that looms in my mind, however, is: “Why won’t they quit staring?”

Regards,
Your Friendly Neighborhood Sales Clerk