Yearly Archives: 2010

Veronika Decides to Die: A Very Special Lesson in Living Your Life Right

Book cover for Veronika Decides to Die by Paulo Coelho. A mostly blue cover depicting a snowy scene with a blurry shadowy figure of a (presumably) woman walking on the snow among some blurry shadowy trees.Every now and again I come across a book that I enjoy enough to read repeatedly. I have several of these on our bookshelves at home. The Harry Potter Series is an annual read for me in my YA set. The Kushiel’s Legacy series is another, in my Not YA set. There are, though, few books that I have encountered that I have read and enjoyed at different periods of my life when that have meant different things to me. Particularly because I have gone through some dramatic life shifts, and because those shifts have given me some fairly fundamental changes in how I view the world, politics, religion, human nature, and mostly myself as well.

One of those books, which has had a great impact on me and which I have enjoyed in immensely different ways at hugely different periods of my life, partly because of the way the author’s experiences are painted into the word work and partly because of the story itself, is Paulo Coelho’s Veronika Decides to Die. Veronkia was recommended to me by a friend who has in the past recommended other books that I have always enjoyed for one reason or another (including The Hitchhiker’s Guide and I, Lucifer, and who also gifted us with a set of 4.0 books for our wedding — you will either fully appreciate that or you won’t), and for me and the way I chew novels for breakfast was a quick read. It took me the better part of a morning. That friend knew that I sometimes practice what is commonly referred to as astral travel, and what I sometimes more commonly lump in with lucid dreaming (they feel the same to me) and thought that I might find the scenes about this topic interesting. I did. In an odd and slightly disturbing way.

In fact, that is how I would describe my first foray into Veronika. Odd and slightly disturbing.

So: Spoilers Ahoy and also a Trigger Warning for descriptions of attempted suicide, a potentially upsetting rape-like scene, and descriptions of mistreatment in a mental hospital.

Veronika Decides to Die (Veronika decide morrer in the original Porteguese) is set in Ljubljana, Slovenia, tells the story of Veronika (I suppose you could have parsed that one out), a 24 year old young woman, who has decided that she has reached the height of her life. She had determined that from this point that life and beauty will probably get no better, and out of no real sadness or unhappiness she has made, in her opinion, the perfectly rational decision to end her life. Her incompleted attempt on her own life winds her up in a mental institution called Villette, in Slovenia, where she awakens to the news that her attempt has irreparably damaged her heart; she is told she has only days to live.

The story is supposedly based on Coelho’s own experiences in mental institutions in his youth where his parents send him for refusing to acquiesce to their demands that he become an Engineer instead of a writer, or at least something useful and respectable. Coelho’s refusal to become something productive proved, to them, that he was “mad”. One of the central themes in Veronika is the idea that collective madness is really sanity, and that sanity is really in the hands of the beholder. Essentially, if everyone in a room, or even a kingdom, believes one reality to be the truth, except for a single person, irrespective of that one person’s authority (the doctor, a king, etc.), then the sanity of that authority is irrelevant, because it is the collective reality of the masses that matters and thus becomes the rational way of thinking.

The way you view this theme really depends on your views of people’s right to define their own mental abilities. I viewed this book through two very different lenses in my life, one where I was fighting my own mind, and one where I was coming to terms with myself instead; a period of self-acceptance rather than self-loathing (still working on that last part). Veronika depicts a mental institution that both suppresses people’s free will, yet allows them to stay beyond the requirement that binds them if they choose to do so. Don’t be fooled, however: There are still many things going on, such as forced medication, forced inside and outside time, and even a scene that describes, very graphically, a treatment of induced insulin shock that sends a patient into what she calls a state of astral travel. The balance of treatment of human dignity with that of the way that disabled people are often treated as objects to be shuffled around and poked and strapped down is troublesome at best, and hard to read without a watery field in front of you at… well my worst. Maybe not yours.

Very troubling to me is the overarching theme, embodied in Dr. Igor, the head psychiatrist at Villette, who has decided that Veronika, a beautiful and vibrant young girl, is wasting her life, and must be taught a Very Special Lesson. So sad, is it, that she has decided to throw away youth, and beauty, and that she is ignoring all that life must be waiting to hand her. He, obviously, knows her life better than she, and is uniquely prepared to teach her that she is, indeed, Doing It Wrong. R-O-N-G, even. How good of Dr. Igor, this man, to come and rescue this poor, helpless, and foolish girl from what might have been the worst mistake ever.

Dr. Igor has this theory, see, that people, like a defibirillator paddle on a heart, just need a jump start to avoid the heart attack that is this mental illness, something he calls “vitriol”. He believes he can shock people into appreciating life and just help them realize that they can simply buck up and learn to love life again.

I don’t want to spoil the book for you, gentle readers, if at this point you are still with me, so I won’t go into detail about how Veronika becomes not only the tool by which he provoke many of the residents of Villette, including Eduard, a patient diagnosed with schizophrenia who becomes a love interest for Veronica, and Mari who has frequent panic attacks. I also won’t tell you how Veronika learns her own Very Special Lesson, because she is not left out of that condescending rule of Dr. Igor who swings his diploma like a true Patriarch. She suddenly sees that she is free from the rules of a society that has given her a laundry list of expectations, and that she now may act like the “crazy” person that she is being treated like. No one believes that she just felt like ending her life, for no particular reason, so she may as well act the part. She starts to see the comfort that is Villette’s lack of accountability.

I think this book speaks strongly to the way that we dehumanize and mistrust mental health patients and people living with any variety of mental illness. Even if I don’t always appreciate Coelho’s delivery.

A caution to you, gentle readers: There is a rape-like scene, depending on how you read it (the first time I read the book, I did not read it this way, the second, I certainly did). Veronika performs a masturbatory act in front of a person who neither consents nor denies consent. It is fairly graphic in description, and it very much made me uncomfortable, no matter how “freeing” it made Veronika feel.

The book was made into a movie that I have not yet seen, as it didn’t appear at any theatre anywhere near where I was living. It stars Sarah Michelle Gellar as Veronika (a stellar choice, IMO), and David Thewlis, most well known to me as Professor Lupin from the Harry Potter series, as Dr. Igor. Should I get the chance (I love you, NetFlix, for coming to my APO!), I may revisit the review.

Who out there, gentle readers, fellow contributors, has read Veronika? Thoughts? Popcorn? Tomatoes?

Book Cover Image: Wikimedia Commons

Canadian Students With Disabilities: There are still spaces in Transcribe Your Class

Transcribe Your Classes!

Please note that spots are filling up quickly for the Liberated Learning Youth Initiative starting this fall. The Youth Initiative provides students with disabilities access to a new Speech Recognition transcription system. During the project, students will be given special user accounts where they will be able to upload recorded lectures and receive speech recognition generated, multimedia transcripts.

Brief application forms are posted at Transcribe Your Class.

We encourage you to review the participation criteria on the website, share this message, and apply to participate. For further information, please contact:

Keith Bain, Project Director, Liberated Learning, Saint Mary’s University
902.496.8741
keith.bain@smu.ca

Janice Stevens, Project Coordinator, Liberated Learning, Saint Mary’s University
902.496.8178
janice.stevens@smu.ca

But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

Calls for Papers

US Conference:

The Association on Higher Education And Disability is pleased to announce the Call for Proposals for its 34th Annual Conference, “AHEAD 2011: Sustainable Access through Partnership.”

The conference will be held July 11-16, 2011 at the Washington Convention Center in Seattle, Washington, USA

The Call for Proposals Submission Deadline is October 25, 2010

The 2011 conference theme, “Sustainable Access through Partnership”, celebrates the reality that the accessible college environment, instructional and physical, is the domain of many partners. Recent years have brought the challenges of increasing and emerging student populations and shrinking budgets and resources, leading us to seek equitable design that is sustainable across time, resources, and populations. The 2011 conference will highlight creative approaches to promoting long-ranging, or sustainable, access and equity through collaboration.

Proposals are welcomed from all AHEAD members, college professionals, faculty and others who do research, teach, or work in the fields of disability and higher education.

Full details and instructions for the Call for Proposals are available at The conference webpage.

We look forward to receiving your proposals!

Canadian Conference:

CALL FOR PRESENTATION PROPOSALS

INTERSECTIONS AND CONNECTIONS WITH DISABILITY STUDIES

In keeping with the Congress theme for 2011 “Coasts and Continents: Exploring Peoples and Places / Rivages et continents : exploration des peuples et des lieux,” CDSA-ACEI encourages attendees at the 2011 conference to explore the geographical, historical, literary, artistic, socio-economic and political world that shapes disability studies and can be shaped by disability studies; to explore the place of disability studies in the world and how the world of disability studies is shaped by an individual’s and a people’s experience. This CFP in particular encourages submissions on glocalization, global citizenship and disability studies.

CDSA-ACEI’s 8th annual conference aims to connect Disability Studies scholars with scholars in different fields and spaces; to connect the discipline of Disability Studies globally and glocally.

For the first time for CDSA-ACEI, this CFP has a section where you can indicate whether you want to present your paper in person or virtually (more information on the proposal form).

Check out the conference website

Recommended Reading for 1 October, 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?

First up, something close to my heart as a user of Sydney public transport from Jo Tamar at Wallaby: Accessibility and Sydney’s public transport: people with different mobilities on buses. I am forever glaring at the dehumanising ‘For more information on travelling with wheelchairs, seniors and prams’ sign. No pullquote as the post is about too many things for one, you’ll just have to click through.

From Beth Haller, Ph.D. & Lingling Zhang, Ph.D., both of Towson University, Towson, Md., USA, at Media and disability resources, we have Highlights of 2010 survey of people with disabilities about media representations, and is there ever a lot packed in there:

In the summer of 2010, an online survey of people with disabilities from around the world was undertaken to find out what they think about their representation by the news and entertainment media.

From the Associated Press, (US) Congress changes intellectual disability wording:

Disabilities advocates on Thursday applauded Congress for passing legislation that eliminates the term “mental retardation” from federal laws.

Attitudes Towards People with a Disability Changing Ahead of London 2012

Attitudes towards people with a disability in Great Britain are improving and could be one of the legacies of the London 2012 Paralympics, the International Paralympic Committee (IPC) were told this week at a three day project review with the London Organizing Committee.

From The Irish Times, State urged to ratify UN disability treaty:

FORMER EU commissioner Pádraig Flynn has called on the Government to ratify the United Nations Treaty on the Rights of People with Disabilities.

Speaking on EU disability policy at NUI Galway, Mr Flynn noted Ireland had signed the treaty in March 2007, but had not progressed to implementing its provisions.

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Signal Boost: Assistance Dog Blog Carnival — Your Input Requested

Gentle Readers!

Sharon and Barnum over at After Gadget have it in mind to begin an Assistance Dog Blog Carnival. The majority of the information can be found at their blog:

I love blog carnival and blogswarms. I try to participate in them as much as I’m able (which is a lot less often than I’d like). Lately, it’s been occurring to me, with the blossoming of so many new, thoughtful, lush, sassy assistance-dog blogs that it might be time to start an AD carnival or to do a blogswarm.

However, this would require many interested participants:

– Sites to host the carnivals (if we went the carnival route);

– Bloggers to submit their posts;

– Readers to read the blogs!

Sharon is asking that anyone interested, or with feedback, answers to the questions posed at After Gadget, please leave them in the comments section there. I hope that you can show some support for this, and if you know anyone who might be interested, please feel free to pass this information along!

Autism & Internet Usage Survey

ETA: Several people have brought up concerns with this survey in the comments, including the AQ test that is at the end. You may want to check the concerns in the comments before deciding if you want to take the survey.

I am an active autistic self-advocate and autism researcher (PhD student, educational psychology). I was wondering if you could take or pass on an autism spectrum-related online research survey I helped to develop?

It received full ethical approval from the review board and contains
consents within it. I think it is sensitively written and it is open to feedback.

The survey is examining the relationship between the autism spectrum and Internet use, identity, and visual perception. Please note that scores are completely anonymous and it’s for any adult or child of at least 7 years in age.

We especially need people who are diagnosed on and/or self-identify as on the autism spectrum. Participants can get help in completing it if needed.

Here’s the link: Survey Monkey Website

It might take about 15 minutes.

Recommended Reading for 30 September 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.

Can you believe it already the end of September?

The Vibrating Square: Respect (Sent in by The Untoward Lady)

But it’s not about intent. It’s not even about the very real impact that such language has on people like me. It’s not even about the fact that what you said is hurtful.

Brilliant Mind Broken Body: After the Separation (Glad you are well again and home, Kali)

But I went through 2 1/2 days of my service dog not wanting to have anything to do with me, and that was their fault for separating us.  I went through more pain at the hospital, I was alone, and I had to deal with days of my service dog ignoring me.  If it weren’t for them, all I would have had to deal with last week was a nasty stomach virus.

The Consumerist: Continental Sorta-Apologizes For Not Allowing Service Dog On Flight

Jessica says Continental offered her a couple of coupons to make good — one for 10 percent off of a flight and another for a free drink. She says she’ll need to give them to a friend because she’s given up on flying for the time being.

Disability Rights California: The California Memorial Project

The perfect last day of a California summer drew a collection of advocates, supporters and community representatives to the Stockton Rural Cemetery. The gathering honored hundreds of people who had died anonymously while residing in the Stockton State Hospital, established in 1851 as the state’s first “asylum” and closed in 1996.

Disability Books: Stevie Wonder Calls for International Action to Enhance Accessibility for Visually Impaired Persons

World-famous singer-songwriter and UN Messenger for Peace Stevie Wonder called on the international community to take action to enhance accessibility for all those with physical disabilities. Speaking at the opening of the annual meetings of World Intellectual Property Organization (WIPO) Assemblies on September 20, 2010, he challenged delegates to conclude an agreement on improved accessibility to copyright protected works by visually impaired persons (VIPs) within a year.

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.

Guest Post from Lisa: Invisible Ableism

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.

Interested in submitting a guest post to FWD? Read our call for guest posts here for more information!

Recommended Reading for Wednesday, September 29

Insomnia Anna says: “Yawn”

Raising My Boychick: On The Ubiquitous Use of “Crazy”

Now you’re just being melodramatic. Don’t you have bigger things to worry about?

Sure. I have mental health disparity because of racism and other bigotries, and exorbitant prices of prescription drugs, and insurance that won’t cover the medicines that work for me, and mental health wards closing, and overcrowding and dehumanizing protocols in the ones still open, and cops shooting people they know are unwell, and mental health used as an excuse to take away our kids, and a lack of effective treatments, and a terrifying mortality rate that people treat as a dishonoring failure in morality. I got lots of bigger stuff to worry about.

Where’s the Benefit: No Wonder People Think We’re All Scroungers

The coalition government’s attack on disabled people isn’t limited to reassessing benefits or encouraging members of the public to shop “scroungers”. Something rather more terrifying is going on: the government and associated entities are repeatedly, and persistently, describing Disability Living Allowance as an out-of-work benefit – which helps convince the general public that it’s a waste of “their” hard-earned tax.

As I wrote in this piece for Guardian Comment is Free, the government’s State of the Nation report offers a woefully misleading representation of the nature and purpose of DLA. “There is a high degree of persistence among claimants of many low-income and out-of-work benefits”, it says. “For example … around 2.2 million people, including 1.1 million people of working age, have been claiming disability living allowance for over five years”.

New Muslim Comic Book Superhero on the Way [Comments are horrible]

The new superhero is the brainchild of a group of disabled young Americans and Syrians who were brought together last month in Damascus by the Open Hands Intiative, a non-profit organization founded by U.S. philanthropist and businessman Jay T. Snyder.
The superhero’s appearance hasn’t been finalized, but an early sketch shows a Muslim boy who lost his legs in a landmine accident and later becomes the Silver Scorpion after discovering he has the power to control metal with his mind.

Astrid’s Journal: Autism, Intellectual Disability, and the concept of Primary Disability

The other point I have huge disagreements with, is the excusing of the lack of attention for intellectually disabled autistics from autistic advocacy groups. This excusing comes from the reasoning that these groups are concerned with autism, not intellectual disability, but you cannot specialize multiple disabilities away. In my opinion, autistic advocacy groups should be concerned with all autistics, including those with multiple or severe disabilities.

Disability Now interview with Dan Daw of Restless Dance Company in Australia: Dancing Dan: The Wizard from Oz

What’s the best thing about being disabled?
Watching people’s faces as the cogs turn when I use the words “dance” and “disability” in the same sentence – priceless!

What funny things get said about your impairment?
My favourite is at airports when the metal detectors beep and they presumptively say, “Oh, you’ve got a metal hip”. “No”, I reply, “I’m wearing a belt”.

Marissa at This is Hysteria: Go Where? Gender, Ability, Intersectionality and Constructivism Please note this is an image-heavy post, and the disability-specific stuff starts about halfway down.

This flawed way of understanding identity – each deviation from the default seen as a discrete layer – is reflected in the washroom signs indicating wheelchair access. Often, there is a male figure, a female figure, and a third non-gendered figure in a wheelchair. Disability is depicted as a discrete aspect of identity, to be layered on top of gender.

Simon Darcy at Accessible Tourism Research: Inherent Complexity: Accessible Accommodation Room Components

Most research had identified the generalities of accessible accommodation requirements without having any specific empirical approach to understanding the needs from a mobility, vision, hearing and cognitive perspective. Each individual has their own access discourse where they value the relative importance of certain room components based on their individual access needs (e.g. many wheelchair users require a roll in shower & hand held shower hose Photo 1). While the overall building codes and access standards identify a myriad of components, the individual only understands at least complex technical documents from what they require in an accessible room (Australian Building Codes Board, 1990; Standards Australia, 1992, 2001, 2002). On the other hand, the accommodation manager manly as a understanding that their establishment has a “disabled room” that people with disability should be other stay in. Hence, once an individual hears that establishment has an accessible room they believe that it will meet their needs (Darcy, 2010).

In The News:

Canada: Dead Veteran’s Last Battle Was for Disability Cheque. “On Feb. 27, he died at the age of 93 in Barrie, Ont. Three weeks later, the $55,000 disability cheque he had been expecting arrived, becoming part of the assets in his small estate. That is, until officials with Veterans Affairs Canada ordered the money seized. Quick may have qualified for a disability but now that he was dead the government wanted its money back.”

UK: MSP Drops disabled clause from assisted suicide bill “Bill Scott, Policy Officer at the campaign group Inclusion Scotland, welcomed the decision, saying: ‘That clause was dangerous, particularly at a time of cutbacks, to say to people you can’t live independently but you can apply for state-assisted suicide as if it’s a way out.'”

Australia: Disabilities ‘forgotten’: opposition “Senator Fifield said more needed to be done to help people with disabilities because neither Labor nor the coalition had “covered themselves in glory” on the issue.”