Tag Archives: autism

Guest Post: PWDs and High-Pressure Sales Techniques

Hi, I’m Cydne. I’m a pansexual, biofemale whose gender identity changes from day to day. I have severe mental health problems, and Aspergers too, as well as arthritis and IBS. Joy! I’m a massive Trekkie and a video game nerd, and I usually blog at livebythem.tumblr.com.

There was a day last year I remember quite clearly. I went shopping. I spent 20 minutes talking to one of those guys who proposition people on the street for charity donations. He was collecting for a charity I do not agree with, and he was asking for a donation I could not afford. I ended up donating anyway. About an hour beforehand, I bought some overpriced cheese because the aggressive free samples guy made me feel guilty by handing me the product right after I took a sample. I’d also gone large that day on my McDonald’s order, because I forgot to ask for a medium, and the server said “So that’s a large, yeah?” and I was too embarrassed to say no.

Anyone with conditions like mine will have similar stories to tell. Those of us with social phobia who are afraid of confrontation. Those of us on the Autistic Spectrum who are easily led and manipulated. Those of us with depression who are lonely and just thankful for someone to talk to. We are the ones who are most easily tricked by aggressive sales techniques, most likely to tip high when a server pretends to be our friend, most likely to keep something we don’t want for fear of confrontation upon returning it. Yet, statistically, those of us with mental illnesses are more likely to be jobless, and thus, more likely to be unable to afford the things we buy out of fear and guilt. According to a UK study, only 20% of people with mental illnesses are employed.

It is likely that the companies who instruct and train their employees to act in this manner are aware of the effect they have on us. A friend of mine took a seminar in “Assertiveness and Sales Techniques.” He was taught how to spot weaknesses and take advantage of them in order to sell products. He was taught to be slightly flirty with women who seem to care a lot about their appearance, and taught to act like a kind friend to people who shop alone — especially women who look nervous or unhappy. In short, he was taught to spot psychological weak points and use those to sell goods.

I doubt his experience is a rare one. These multinational corporations pay millions of dollars to research firms to help them improve sales. Sales research groups use psychologists to help them better understand how to sell to people, especially on the case of body language. The effect Autism and mental health issues have on body language is well known. So there’s a fair chance that they know they are harming those of us with mental health problems and Autism or Aspergers, for the sake of sales, both emotionally and financially, similar to how they know they are harming those with body dysmorphic disorder by advertising using only photos of the slim and airbrushed.

It’s the donation soliciting people that affect me the most, I think. They seem to deliberately target me, perhaps because I used to shop alone. I find confrontation terrifying. I find meeting new people terrifying. And I’m terrified of what people think of me. So, when a friendly looking guy approaches me and asks me for “a moment of my time to discuss Oxfam,” I find myself unable to walk away, lest he judge me, or say something to me to make me feel bad in some manner.

They always say things like “it’s only £3 a week, anyone can afford that!,” and I find myself so ashamed of being on benefits and having shopping bags with me, that I have to agree and sign up. Even now, I feel like I should tell you that my bags usually contain pet food or replacement clothing, in case you judge me for how I spend my benefits. Heck, let’s be honest, saying “everyone can afford £3 a week” is pretty darned classist, too.

A day spent shopping may not seem all that memorable to most people. But my day shopping last year will likely stay with me forever, serving as a reminder of my vulnerability. I no longer shop alone. I do my shopping online, or with a trusted companion. I am a vulnerable person, through no fault of my own. This is not about being easily persuaded, or being a stereotypical “shopaholic” female with no money management skills. This is about being ill, and knowing that most companies out there will gladly take advantage of that.

Recommended Reading for Wednesday

Hi All! My laptop is broken, woe, and thus I am more scattered than even the last month might lead you to believe. (Repair will take a few days, I haven’t lost anything important, and it won’t even cost much to fix, so don’t fret!)

Hand to Mouth: Lilliput touchscreen monitor review: a pleasant surprise

So. A friend of mine did the gambling for me, and surprised me with a 7” Lilliput touchscreen USB monitor. I am typing on it with the stylus taped to my fingers, because otherwise I lose my grip after a while and the pinching motion hurts.

If you want to use this device on something other than your home computer, be aware that the monitor requires driver installations for the device and the touchscreen capability. The disk includes drivers for 2000 through 7, 32 bit. Installation is straightforward, as is the touch calibration – you hold the stylus on 4 points until it says OK. You can also choose 9 or 25 points from the calibration menu later on, and there is also a draw test to determine accuracy. You do need some degree of fine motor control.

Lisa J. Ellwood at UK Uncut: Guest post: Disabled Activists and the Anti-Cuts Movement

Recent media coverage has shone the spotlight on disabled people, and that spotlight has been less than favourable. We are castigated as ‘scroungers
and ‘fakers’ not only by journalists and their employers, but also neighbours, friends and even family. It would seem that the vast majority of the great British public knows several people who are as fit as a fiddle and audaciously raking money in hand-over-fist thanks to bogus benefits claims based on faked illnesses. There is an endless stream of rhetoric to be found when reading any newspaper, blog or listening to talk radio. Too often I find myself reading the latest venomous shots fired by the disgruntled and wonder if the face behind the pseudonym is a familiar one.

Musings of a Marfan Mom: Ellen’s Birth Story

My husband and I decided to have biological children in spite of my genetic risk. During one of my first ob-gyn visits with my first pregnancy in 1999, I brought up delivery options. My bone disorder is rare, and medical professionals who don’t quite understand it can be overly cautious. I knew from my research that women with my type of OI (the most mild type) who have not had pelvic fractures or pelvic deformities can deliver babies vaginally. I was also familiar with research indicating that c-sections are not necessarily safer for babies who have OI. But I was afraid my doctors would freak out about a fragile mom delivering a potentially fragile baby and insist on a c-section. I was relieved when the doctors said they were fine with my planning a vaginal birth. I settled into my pregnancy, took childbirth classes, and looked forward to seeing what my body could do.

Miss Invisible at Fucking Meds: Fun with benzos

Dear Ativan,

You were first prescribed to me on an as-needed basis for panic attacks, and you were so good to me. Other meds often do awful things to my system, but the worst you ever did was knock me out, which was nice when I was, y’know, too panicked for rest. So it made sense for the pdoc to put me on you when I needed a day-to-day med. Just a tiny bit, just a quarter of a .5 mg tablet. Barely a dose at all.

Astrid: Change in Autism Symptoms and Maladaptive Behavior after Exiting High School

I’m not quite in the mood for studying. However, I thought that, since I’ve been nominated for best autism spectrum blogger in the Mental Nurse TWIM blog awards, I’d better do an autism post for a change. This time, I’m going to review a study on a subject that is dear to my heart: the effects of exiting high school on autism symptomatology and maladaptive behaviors in adolescents and young adults with ASD.

Recommended Reading for 17 December, 2010

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?

United States: Tampa’s ‘Sensitive Santa’ allows children with autism to get photographs, too by Shelley Rossetter at the St Petersburg Times:

The mall’s owner, Glimcher Realty Trust of Ohio, started Sensitive Santa in some malls nationwide two years ago and extended the idea to all its properties this year, said Kristy Genna, marketing director for WestShore Plaza.

Ireland: Deaf man can sit on jury, says judge by Eithne Donnellan at the Irish Times:

A HIGH Court Judge has ruled for the first time that a deaf person can sit on a jury in the Central Criminal Court.

Mr Justice Paul Carney yesterday ruled that profoundly deaf teacher Senan Dunne could sit on a trial jury with the aid of a sign language interpreter. He said objections to having a “13th person in the jury room” in the form of a sign language interpreter could be met by the signer taking an oath of confidentiality and the jury foreman ensuring that she or he was confined to translating what went on.

Just updating you on the situation in Sierra Leone (see RR for 3 December): In Sierra Leone, Disability Congress Writes President Koroma by Abdul Karim Fonti Kabia at the Awareness Times:

The NDC highlighted that persons with disabilities remain severely under-represented in political and decision-making positions; disabled hold only 0.01% of parliamentary seats, and; the current representation of disable persons in cabinet is at 0.0%.

Indonesia: City to Soon Issue Bylaw on Disabilities at BeritaJakarta.com

As form of its attention to the disabled, Jakarta capital city government plans to implement local regulations on building facilities and accessibility for the disabled, including the sanctions for the violators. At present, there are approximately 35 thousand disabled people in five administrative areas of Jakarta.

Australia: ‘Warringah Council is seeking feedback on design concepts for the Collaroy Disability Tourism Precinct,’ something you can read about in Disability precinct design feedback wanted at the Manly Daily. Also see Windfall for disabled, also by Brenton Cherry at the Manly Daily:

The vision is to create a holiday destination for people with disabilities and their carers as well as a specialist economic business hub for Collaroy.

It would be a place where not only access to the beach, including to the water using an amphibious wheelchair, is possible, but also restaurants, public transport, accommodation and entertainment facilities.

Here’s the page on the Warringah Council website. Collaroy is a beautiful place on Sydney’s Northern Beaches. I am so excited to hear about this proposal, and hope that more people will be able to enjoy that stunning beach!

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Recommended Reading for December 14, 2010

K__ at Feminists with FSD: Notes on MTV’s True Life: I Can’t Have Sex

Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

Carol at Aspieadvocate: I’m an Embarrassment

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.

David Gorksi at Science-Based Medicine: Death by “alternative” medicine: Who’s to blame? [trigger warning]

Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.

Arwyn at Raising My Boychick: How far I’ve come

Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.

Linsay at Autist’s Corner: Autism-related gene spotlight: CNTNAP2

EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.

Guest Post: Reflections on being Jewish and Autistic: Different minorities, same critique

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. Her last guest post for FWD was “I Do Not Suffer From Autism.”

In writing this piece, I in no way wish to imply that my approach is the only approach, that having a religion is better than having no religion, or that Judaism is right and that other paths are wrong. As long as people act consciously and ethically, I really don’t care what they believe, or whether they avoid religion like the plague. I have been involved in social justice work on behalf of all people from a progressive Jewish perspective for much of my life, because that is the culture in which I find myself at home and because it provides me with a useful framework for action. I abhor proselytizing and fundamentalism of any variety; I reject violence, no matter who carries it out; and I support a just, two-state solution in Israel/Palestine, may it be in our lifetimes.

For almost two years now, I’ve become increasingly aware of how other people regard autistics. As you all know, the news is not altogether good. As I’ve waded my way through all manner of error and nonsense, I’ve had the most familiar feeling, as though I had heard it all before. The other day, it finally occurred to me: I’ve encountered the same basic stereotypes and misinformation about Jewish people as I have about autistic people.

All minority people, to some extent, have to endure similar false charges, but the similarities between my experience of prejudice as a Jew and my experience of prejudice as an autist are striking. Here are some of the most damaging myths:

We don’t love properly. In the larger, mainly Christian culture in which I’ve lived my life, the view seems to be that the Jews of the “Old Testament” were all about strict justice, and that the Christians of the “New Testament” were all about love. (I put the names of the books in quotation marks because I don’t see one as being old and outmoded and the other as having superseded it; I see them both as valid traditions in their own right.)

The Jewish God, the critique goes, is only a God of judgment, a God of punishment, a God who lacks forgiveness, and we are just like our God: cold, judgmental, merciless. The Christian God, on the other hand, is a God of love and forgiveness. When I was growing up, without much of a Jewish education, I actually believed all of this. I believed it until I was in my late thirties, and I asked a rabbi whether there was anything in Judaism to help me heal my broken heart. His reply? “Yes. Our people brought the truth to the world that there is a God who loves us and cares about our lives.” I nearly fainted. When I began to study and practice Judaism in adulthood, I was startled to find that we are instructed to love our neighbors, to love our enemies, to love mercy, and to make right the wrongs of the world.

And what did I believe about autistic people until I found out that I actually am one? I believed that autistic people don’t have empathy, the very basis of loving relationships. The lack-of- empathy trope has been at the core of autism theory for a number of years, and it’s appalling how many people still believe it. Of course, they don’t appear to have met any of the autistic people I know, nor do they seem to have much empathy for the pain and suffering this canard causes autistic people on a daily basis.

We think terms of black and white. Now, the interesting thing about this particular myth is that it betrays some pretty black-and-white thinking on the part of the people who accuse us of black-and-white thinking. For example, when people say that Jews are only about justice, it’s justice of a kind that brooks no shades of gray. Christians, on the other hand, are said to be all about love, which encompasses many, many shades of gray. But the truth is that Jewish tradition has always been concerned with a concept called tzedakah, which is essentially an action that combines justice (righting a wrong) with love (easing and, ultimately, healing the suffering of other beings). We do not think in black and white about justice and love; in fact, we combine them. To split them apart is an example of black-and-white thinking at its best.

Now, consider the myth that autistics think in black and white, usually expressed as our being all about logic and systems. In fact, some researchers believe that we have Extremely Male Brains that are high on systemizing, while non-autistics have brains that are high on empathizing. And yet, when I look at my own life, and that of other autistic people, I often see a capacity for high levels of both systemizing and empathizing, and I see them working together. We don’t split them apart. Other people do, and then they tell us that we’re the ones with the black-and-white thinking. It’s enough to make you weep.

We are excessively logical. Many people believe that Judaism is all about “legalisms,” and that it does not concentrate on coming from the heart. This particular myth is very old and very intractable, in part because most people believe that Judaism begins and ends with the “Old Testament,” ignoring thousands of years of mysticism, story-telling, discussion, ritual, and practice that are all about opening one’s heart. I’m not saying that all Jews come from the heart, any more than all Christians come from the heart. I’m saying that Jewish culture has its own ways of combining head-thinking with heart-wisdom that are little known or understood by others.

Of course, autistics are constantly stereotyped as being overly logical—except when we’re stereotyped as being out of control. And yet, somehow, we manage to have friends, families, relationships, children, and ethical lives.

We insist upon being different. For a number of years, I wore garb that clearly identified me as Jewish. For awhile, I wore a yarmulke and tzitzis (ritual fringes) every day, all day. During another period, I only wore headscarves and dresses. I now dress in a thoroughly secular fashion. When I didn’t, I got all kinds of attitude about “setting myself apart.” Of course, I wasn’t setting myself apart. I was just being myself. And I wear what I wear now because I am just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Not surprisingly, I have gotten similar messages regarding my autistic sensitivities to all things sensory. I’m told that I’m “choosing” to be so sensitive, that I’m setting myself apart, when I’m really just being myself. And when my sensitivities are not as troubling, I’m also just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Other people are normal, and we are abnormal. Many years ago, when my daughter was small, her father used to pick up one of her friends after school and bring him home. One December, on the way home, the young man said, “We celebrate Christmas at my house. We don’t celebrate Chanuka. We’re not like you. We’re normal.” My ex-husband took the long way home and patiently explained the concept of diversity to the young man until he got the picture.

And of course, we autists get stuck with the “abnormal” label all the time—more evidence of that dualistic, black-and-white thinking that “normal” people aren’t supposed to engage in.

We are all alike. In response to all the many myths surrounding Judaism and Jewish people, I did interfaith work for a number of years, teaching workshops in areas schools and churches. Some of the most common questions I got began with the words, “So what do Jews believe?”—as though we all believe the same thing! That was the moment I’d introduce the mantra of “You get two Jews in a room, you get three opinions.”

Likewise, it seems, people have an excessive need to see autistic people as being all alike. It usually expresses itself in terms of narrowing the definition of what autistic means. (I recently saw a YouTube video in which the mother of an autistic young man actually said that you can’t be autistic if you can speak. I was flabbergasted. ) At other times, this need to see us as alike expresses itself in conclusions by researchers that autistic people are a collection of deficits and impairments without any strengths at all. If we have strengths, they are usually called “splinter skills” (a term I despise, even though it’s got some cool alliteration and assonance going on).

Of course, we’re as varied as any other group. I’m not sure what kind of impairment, oops, I mean, neurological difference keeps people from seeing that variation. It might be interesting to do some genetic research on the matter.

We are not fully human. I first became aware that some people believe that Jews are not fully human when I was in Hebrew school and saw a piece of Nazi propaganda in which Jews were likened to vermin. I felt such pride in who I was that I just couldn’t believe my eyes. Who could really think that Jews weren’t people? Apparently, at certain times in history, a great many people.

I was reminded of this experience when I happened upon some writing by Dr. Ivar Lovaas, the psychologist who pioneered the treatment now known as Applied Behavioral Analysis. In discussing the basis of his treatment, he wrote of autistics in 1974:

“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

I shudder to think of how many people still believe this kind of thing.

Of course, Jews, autistics, and members of any other minority group share similar experiences: we are vulnerable no matter how well we “pass” and live up to the standards of the larger culture, and we constantly have to fight against the appropriation of our own voices. Moreover, the solution to whatever problem we appear to pose consists of attempts to do at least one of the following: a) efface our differences to make us indistinguishable from others, b) demand at least a pro forma conversion to the dominant paradigm, which means that we can stim/rock back and forth in prayer/be ourselves, but only out of the public eye, or c) isolate us in ways both visible and invisible.

There are many, many autistic people who cannot do a “pro forma conversion,” who cannot “pass” as I do, and who have endured severe levels of bullying, assault, and isolation as a result. I shy away from the word Aspie and I use the word autistic to describe myself in order to make common cause with people across the spectrum (in the same way that I refer to myself as a Jew, not a denominational Jew, in order to make common cause with other Jews, no matter how differently they may think and practice, and how vehemently I may disagree with them). I will continue to do both. I have Asperger’s Syndrome, and that makes me autistic. I had Jewish parents, and that makes me a Jew. I may present differently from others in my group, but then again, so do trees and birds and rocks. Why should people be any less diverse than the whole of creation?

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

Recommended Reading for Thursday, December 8, 2010

I hate this time of year because I live in the Northern Hemisphere and it’s dark really early. At least we’ve been avoiding the snow-dumps I hear are all over central Canada, but it’s only a matter of time.

Civil Rights Now!: Civil Rights Now! speech at Dec10 CLAS Forum on UN Convention on the Rights of Persons with Disabilities

As my lawyer friends say there’s no right without a remedy; because most BC voters with disabilities cannot afford a good lawyer their rights have very little meaning because they have no way to enforce them. And that’s why our governments, Health Authorities, businesses, School Boards, service providers and unions can do anything to you if you are a voter with a disability.

That’s why Civil Rights Now! believes BC voters with disabilities need:

  • Law which gives the equality provision of the Canadian Charter practical force and effect in their daily lives.
  • Law which gives them truly-portable, sufficiently-funded, consumer-driven Individualized Funding.
  • Law which gives them funding for test cases involving their civil rights.
  • Civil Rights Now! launched a campaign this year to persuade BC politicians to commit that whichever of them wins the next election they will enact such laws. By so doing they will fulfill the intent of the Convention and, more importantly, the equality provision of Canada’s Charter of Rights and Freedoms, many decades after it became the supreme law of our country.

Urocyon: Disability and UK fuel poverty

I felt pretty bad, because until I started reading about the extent of problems this winter, I hadn’t considered just how bad the situation is. (Bit of a shame this is another thing that it apparently takes larger numbers of middle-class people being affected to draw more news attention.) This is in spite of having dealt with parental disability-related poverty and substandard heating for years, in a colder-winter climate not moderated by the Gulf Stream. This isn’t the coldest month, but it’s supposed to be 10°F/-12°C tonight back home–not unusual. It honestly didn’t seem that cold to me, even though I was aware that last winter was the harshest in 30 years for the UK, and this one is looking to be if anything worse. (Climate change? No…) But, even though it isn’t very cold in absolute terms, if you’re not used to its getting, much less staying, below freezing very often? That’s a pretty big problem.

Then I started thinking about how disabled people just weren’t getting mentioned much.

Anna Racoon: The Orwellian Present – Never Mind the Future.

No, he can’t, he has no access to the Mental Heath Tribunal – Autism isn’t a mental illness. This action isn’t being taken under the Mental Health Act – it is being taken under the Mental Capacity Act. Under the MCA he only has access to a ‘Best Interests Assessor’ – who is appointed on a consultancy basis, and paid, by…..the Local Authority.

He can be deprived of his liberty for up to a year, which period can be renewed indefinitely, for the purpose of ‘assessing’ him – see above – being sent to Wales to ‘assess’ why he is unhappy at being locked up.

Sharon Brennan at Comment is Free: It’s now officially ‘unsustainable’ to support disabled people

Let’s be clear: this increased DLA caseload is not because of fraud. DLA has one of the lowest fraud rates of any benefits. In fact, government figures published by the House of Commons work and pensions committee suggest that benefit fraud for DLA, carer’s and attendance allowance among others has reduced since 2001 from 2.2% to 0.8% between 2008-2009 (the most recent year for which statistics are available).

Diary of an NHS Buff: The Government is implicated in creating negative attitudes to disabled

Clearly there is a negative perception of disabled people in the UK, which can undoubtedly be attributed in part to right-wing media representation of the disabled. The Daily Mail is notorious for this. A recent front page screamed, “75% of claimants are fit to work”, and carried on: “Tough new benefits test weed out the workshy”.

You expect this kind of thing from the Daily Mail. But what shocked me is that the 75% figure came from a press release from the Department of Work and Pensions. And the figure is wrong. So it amounts to blatant Government propaganda.

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 17, 2010

Your friendly neighbourhood Anna is out of town at the moment. Please enjoy this recommended reading post from the future.

Lindsay at Autist’s Corner: Doubly Deviant: On Being Queer and Autistic

EXECUTIVE SUMMARY: This is a very long, rambly autobiographical post about being bisexual and being autistic: it compares my experiences coming to terms with both of these facts (always knowing about the autism, vs. having to figure out the sexual orientation; and also, doubting the possibility that I could *have* a sexual orientation because I thought autistic people didn’t date or have sex, or even want to do either of those things) with those of Amanda Forest Vivian, who is a lesbian, and autistic, and has written about those things at some length at her own blog. I also discuss the ways being autistic has complicated being gay for me — besides my initial difficulty realizing that what I felt about girls was, in fact, sexual desire, there was also a profound isolation from the larger Gay Community, which I never felt like I could (or would want to) join.

Have we linked to High Functioning yet?

A list of different ways people use the word “high-functioning” about people with developmental disabilities; an attempt to figure out what it actually is supposed to mean.

Interested humans–people with disabilities, staff, family members, allies, and people who are more than one of those things–are invited to share different ways they have heard the term “high-functioning” be used.

Amanda Forest Vivian at I’m Somewhere Else: 12. Bird Brains

The classic example of impaired “social skills” in people with “Asperger’s” is a person who constantly talks about their favorite subject, and doesn’t notice other people’s boredom or discomfort. I will explore this by presenting two people who like to talk differently.

Shiva at Biodiverse Resistance: Call for Papers – * Critical Autism Seminar Day * Tuesday, 18th January 2011 (UK)

Keynote speaker: Anne McGuire* (Department of Sociology and Equity Studies in Education, Ontario Institute for Studies in Education (OISE), University of Toronto, Canada). Anne’s doctoral research analyses the social significance and productive effects of cultural representations of autism produced and circulated by individuals and collectives engaged in autism advocacy in the contemporary West.

Our aim is for this conference to be as inclusive as possible. We welcome activists, undergraduate and postgraduate students, practitioners and academics to join us.

Melissa Mitchell at Service Dogs: A Way of Life: Book Review: MAKING THE MOVE TO MANAGING YOUR OWN PERSONAL ASSISTANCE SERVICES (PAS): A Toolkit for Youth With Disabilities Transitioning to Adulthood

(includes PDF link to download of book)

This in-depth 69 page guide covers this ins and outs of personal assistants for youth with disabilities utilizing the stories of youth with disabilities to illustrate topics related to utilizing, hiring, and selecting personal assistants. Pages 10-12 talk about Service Dogs and an option for meeting personal care and assistant needs. The section is clear, honest and bringsup many good points people who are new to dogs often don’t realize.

US: National Federation of the Blind: Penn State Discriminates Against Blind Students and Faculty

Baltimore, Maryland (November 12, 2010): The National Federation of the Blind (NFB), the nation’s oldest and largest organization of blind people, announced today that it has filed a complaint with the United States Department of Education, Office for Civil Rights, requesting an investigation of Pennsylvania State University (Penn State) for violating the civil rights of blind students and faculty. The NFB filed the complaint because a variety of computer- and technology-based services and Web sites at Penn State are inaccessible to blind students and faculty. Title II of the Americans with Disabilities Act requires public state universities to offer equal access to their programs and services.

This is being discussed as well at the Chronicle of Higher Education: Penn State Accused of Discriminating Against Blind Students. Please be aware that the comments are… Well, they’re internet comments in a place that isn’t exactly disability-friendly, although there are many people pointing out that blind students would like to be able to get classroom material as well.

Anyway, I have just realised that I am actually writing this from the past – I always get confused when I travel if I’ve gone forward or backward in time.

Recommended Reading for Wednesday, November 3

I’m sorry this is at an odd time today. I forgot it was Wednesday. (I forgot yesterday was Tuesday, so this makes total sense.)

Monday was Autistics Speaking Day:

Corina Becker at No Stereotypes Here: Preparing to be Loud

When I proposed Autistics Speaking Day, I merely thought that it’ll be myself plus a couple of others participating. However, it turns out that there are a lot of people who feel the same, and different names for it, from Autism ShoutOut! to our Autistics Speaking Day.

The name for it doesn’t matter. This is a day that is supposed to be about spreading Autism Awareness, therefore it’s OUR day. It doesn’t just belong to me, it belongs to all of us, and what matters is that we stand together to raise Autism awareness.

Corina followed up with The Success of Speaking

I will be honest, when I proposed Autistics Speaking Day, I thought that at best it would be myself and a few others, tweeting on Twitter and maybe putting up a few blog posts. And when the criticisms came in, with people saying that much wouldn’t happen, so why bother, I thought of two things. The two things that leads me to be active in the Autism and Disability communities.

Corinna and Kathryn Bjørnstad have made a very long list of bloggers that participated in Autistics Speaking Day. I recommend checking them all out.

Steve Silberman at Neurotribes: I’m Right Here: Rudy Simone on Life as an “Aspergirl”

Unlike autistic author and animal-behavior expert Temple Grandin — whose life was the subject of an acclaimed HBO biopic starring Clare Danes — Simone wasn’t diagnosed until she was in her 40s. Diagnosis in mid-life is common for women with Asperger Syndrome. Often highly intelligent and articulate, they’re able to mask their social deficits while leveraging their ability to focus intensely into achievements in school and the workplace.

Simone had a relatively happy — if eccentric — childhood, but when she hit adolescence, the social tide seemed to turn against her, washing away most of her friends. Suddenly, her trusting exuberance and hyper-focus made her weird in the eyes of her peers, and a convenient target for bullying and abuse. One day, Simone’s chief tormentor at school brutally beat her in front of a cheering crowd of older kids. Humiliated, the 12-year-old Simone stopped singing and laughing in public

The Untoward Lady at the Vibrating Square: Memories [Discusses bullying]

I expected to remember the bullies. I expected to remember the pain that had been caused. I had thought that the faces of my memory, the pain, would come and surface again as I looked at the rows of portraits.

MASSIVE TRIGGER WARNING ON THIS ONE: Dave Hingsburger at Rolling Around in my Head: Curbing Anger: Daring Difference (TW for abuse of autistic boy)

What they did defies understanding. Maybe it just defies MY understanding. For three days they tortured a young 17 year old man with autism. The list of what they did is astonishing in its length, in its cruelty, and (it must be said) in its creativity. Here’s a brief survey of what a teen boy with autism suffered at the hands of his tormentors.

The Quixotic Autistic: New Age & Autism Part One: The Horse Boy (See also Part Two)

My very first instalment in my series on New Age perspectives on autism begins with the book and movie of the same title, The Horse Boy, the book being written by Rupert Isaacson, the movie directed by Michael O. Scott. At the centre of both though is Rowan Isaacson, son of Rupert and Kristin. He is the titular “Horse Boy” and he has autism. The book and film both chronicle his parents taking him on a special trip to Mongolia to consult with traditional Mongolian shamans, in hopes of “healing” Rowan from his tantrums and incontinence, as well as helping him become more social and less agitated by overstimulation. The idea is that the combination of riding horses and shamanistic healing will benefit Rowan emotionally and physically.

jholverstott: A Shade unDifferent: Latent Bullying and ASD, the Epidemic Grows

Most of what I have read in the literature suggests that anti-bullying campaigns are ineffective, at best, and potentially damaging, at worst. Kid with ASDs are a tricky audience, regardless. They are kind, too kind to stand up for themselves with the empowered and sometimes sassy words that stand down a bully. They are not equipped to recognize the savviness of cyber- and mobile-bullying, with its faceless and nameless tactics. They are primed targets because they want so desperately to believe in others, to believe in a friend, to have a friend. They are cyclical victims because of the flaws of the system that shields them; “tattle” and enlarge the target.

Recommended Reading for Wednesday, October 27

If you haven’t been following my tale of woe on my personal journal, I have a terrible ear infection and can’t hear out of either ear. But now I have antibiotics to treat the middle ear infection, so any day now I should be able to hear something. I hope. (Woe.)

Today’s Recommend Reading is not entirely about the budget cuts and slashing of disability-related funding, but a lot of it is. I really recommend following Where’s the Benefit? for more in-depth discussion of these cuts.

Disabled People Protest Against The Cuts That Will Kill

Data from Family Resources Survey and the National Equalities Panel found that:
· 75% of disabled women and 70% of disabled men are already at the bottom end of Britain’s income distribution scale living in poverty.
· A tenth of disabled woman have incomes below £31 per week and a tenth of disabled men have incomes below £59 per week including earned income and benefits.
· Under the coalition government’s economy drive disabled people are set to lose at least £140 per month through direct cuts to disability benefits (initially devised to pay the extra costs of being disabled) alone.
· The Tories have threatened to remove our DLA saying that the number of claimants must be reduced by one-fifth.

rich at arbitrary constant: Osborne: Welfare cheats are “like burglars”

I’ll start by reminding people that most disability benefits are not work- or sickness-related. For example, Disability Living Allowance (DLA) helps with the additional costs of disability, primarily related to personal care. It is for people under 65, though you can continue to be in receipt of DLA over the age of 65 if you have it before you are 65. (Attendance Allowance is the equivalent for people over 65. Both are non-means tested.)

And rather than pejorative statements that play to Osborne’s prejudices, let’s introduce some facts.

CripChick’s Blog: thoughts on national coming out day

today is national coming out day. as i think about what this means for me as someone who is so out, yet so so closeted, friends and i are on a conference call going over notes from a recent summit where self advocates with developmental disabilities worked to create policy recommendations on community living. (sadly this is needed because too many providers use gov’t dollars set aside for community living to do things that are really hurtful to disabled people).

we asked people to talk about what group homes and other residential facilities for disabled people often look like. this is what the notes reflected.

Kali at Brilliant Mind, Broken Body: Disability services – hit or miss

Now, one of the interesting things I have to point out here when talking about how my law school handles my disability is that my law school is semi-autonomous from the greater university. It creates an…interesting…situation for disability accomodations. Not bad entirely; it’s had pros and cons for me. The way getting accomodations works for me is like this: I bring my doctor’s letter to the law school’s disability coordinator, who we’ll call W. The disability coordinator faxes the letter over to the university’s disability resources center. ( I officially have a file there and a counselor, but I’ve only really interacted with her over one issue.) The disability resources center sends back its evaluation of what accomodations I’m to be accorded. W and the law school student resources secretary then arrange for the accommodations.

Corina Becker at No Stereotypes Here: Adults Count Autism Survey

Not long ago, I heard about a survey being done by the Redpath Centre on the needs of Autistic Adults. Looking at the website, I see that the purpose of the survey is to gather materials in order to advocate for better services. Curious and always willing to help out, I emailed them, and received this reply.

In the news:

UK: The Guardian: Disabled people among the hardest hit by spending review: Osborne limits employment support allowance to one year. “After one year, people with assets, savings or partners who work will no longer receive benefits. Single people with no assets may be able to qualify for a means-tested safety net, but everyone else will have to manage on their husband or wife’s salary – no matter how low it may be – or dip into any private savings they may have.”

UK: The Guardian: A whirlwind of hatred against the disabled: Just how far are we, as a society, prepared to let violent crime against the disabled spiral upwards? [Trigger Warning for discussions of violence against disabled people, including sexualised violence] “The statistics should shame us all. Nine out of 10 people with learning difficulties have suffered bullying or harassment.”