Category Archives: recommended reading

Recommended Reading for December 9

Colored Spade

Little black girls in small Maine towns never do. Little black girls with white parents in small Maine towns are just confused. And little black girls with mental illnesses and white parents in small Maine towns are very confused.

I still don’t know my first mother, but I would like to. I know she has mental illness, like I do. I know I have a sister. I’d like to know them very much. I feel lost, drifting. It doesn’t matter how much the polar bear loves the panda cub, the panda cub will still never be a polar bear, even if she tries to bleach away her blackness.

“It”

So, me and my aide were at the park with one of my dog-walking clients. This lady and her dog come in (we are the only people there) and naturally we start chatting because her dog and my client are playing. She directs all of her conversation to my aide, who says “EVA’S a dog walker and SHE sometimes comes here” etc.

Bearing Witness

This story doesn’t surprise me. I hear from families with children with disabilities and my nephew also has a disability that requires equipment. Claims are denied and families scramble to keep the child involved in the community, using whatever they can afford. As a child grows into adolescence, he/she may find himself/herself in the same situation as the Orlando youngster- using equipment designed for babies and toddlers even when it’s not medically necessary. (There’s an important distinction there- I’m not blaming parents for using suitable equipment for safety or medical reasons. ) It can happen to adults too.

Transcript: Autism Women’s Network interview with Kristina Chew: The ABCs of IEPs

Here’s a transcript of Sharon daVanport and Tricia Kenney’s interview with Kristina Chew about Individualized Education Plans (IEPs) for the newly-founded Autism Women’s Network radio show.


The Autism Women’s Network mission statement is: “To provide effective supports to autistic females of all ages through s sense of community, advocacy and resources.” We also want to let everyone know, too, that our radio show is going to be supportive of all people on the spectrum, and today is a really good example of that.

We have Kristina Chew as our guest today. Kristina is a professor at Saint Peter’s College, and I believe, if I’m not mistaken, Saint Peter’s College is in New Jersey….

Personal Experience from Kate, who recovered from Anorexia

I am Kate, 31 and in recovery from anorexia. My experience of seeking treatment has taught me that often you have to fight the system and keep persisting until your voice is heard.
I first sought treatment for anorexia when I was in the early staged of the illness, aged 17, back in 1995. My family doctor weighed me and put me on a course of antidepressants. He told me that even Princess Diana had an eating disorder and implied that it was simply a phase. I felt like a fraud as I’d gone there hoping for help with my eating disorder and received nothing but medication.

Over a period of a year I saw my doctor monthly to be weighed and each time my medication was either increased or switched. Unsurprisingly, the medication had little or no impact on my illness. Eventually I was misdiagnosed again, this time with Chronic Fatigue and referred to a specialist who gave me yet more medication and put me on a graduated exercise programme to rebuild my strength. Looking back it is rather ironic that the very treatment of exercise was prescribed to an anorexic and years later my exercise addiction landed me in the EDU!

Recommended Reading for December 8

Human Dignity for People with Disabilities

You may remember that this past July, Susan Rice, U.S. ambassador to the United Nations, signed the Convention on the Rights of Persons with Disabilities on behalf of the Obama administration. The disability rights treaty is a comprehensive promise made by nations across the world progressively promoting the human rights of people with disabilities.

The convention is revolutionary. Last year, on the 60th anniversary of the Universal Declaration of Human Rights, ACLU Disability Rights Fellow James Felakos wrote that the convention describes disability not as “an individual’s condition but rather as the flawed interaction between that impaired condition and society’s lack of adaptation to it, departs radically from conventional thought and is a core concept of the Convention.”

Why I never expect to be right

And understanding language was only part of it. It seemed to me that everyone other than me was moving along to the pattern of music that I couldn’t detect. And that every time I tried to insert myself into the pattern, no matter how hard I tried the music turned dissonant and terrible and pushed me out again. So I would never have guessed that my ability to turn written into spoken words, or my general ability to find and memorize and analyze the world through patterns, had been impressive enough for a five-year-old to earn me a high score on a test that people believed all sorts of ridiculous things about. (Meanwhile the people who tested me thought those abilities meant so much that they would disregard my receptive language scores and all other scores that didn’t make sense to them. My guess is that my being white and middle-class also helped them forget.). I still remember the test and the manner in which I worked out the answers. I literally didn’t know the meaning of the word “test”. But my answers were apparently impressive for a five-year-old (not so much for a fifteen or twenty-two-year-old, but that’s another story.)

The Reformist The Radical

activists friends and i talk a lot about balance and energy. about how to work the system and how to do what we love (organize, create) but come to think about it, no, not everyone faces that problem. people who grow up as translators and bridge builders—folks who live in multiple communities, folks who had some privilege and were favored in some way by the system, mixed folks— are the ones who travel back and forth never knowing where they fit, what safe space looks like, when to switch up tongues. people say that both the reformist and the radical has to exist but no one feels the obligation to be both, to carry everything, like we do.

our communities fought so hard to be at the table, how could we not respect that & politely say no thank you to sitting there?…honestly our communities that we are working with don’t have the privilege for us to disengage, they need the resources, the funding, the connections that come w/ sitting at the table. (especially with disability and the daily things we need being so tied up in government). …we could spend a month with all our energy going to trying to fund something ourselves or we could use the dominant culture language skills we have to spend a day writing a grant application. …or these folks aren’t members of our communities but could be amazing allies if we put some time into it.

News:

Health Care Plan Could Cut Home Care

The impact of the legislation on Medicare beneficiaries has been a pervasive theme in the first week of Senate debate, which is scheduled to continue through the weekend.

Home care shows, in microcosm, a conundrum at the heart of the health care debate. Lawmakers have decided that most of the money to cover the uninsured should come from the health care system itself. This raises the question: Can health care providers reduce costs without slashing services?

Recommended Reading for December 7

Disability & Poverty

People with disabilities, the report says, account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents.

The extra costs associated with living with a disability such as purchasing expensive equipment like wheelchairs and catheters or obtaining specialized medical attention keep many disabled people and their families in poverty, the report notes.

Autism Speaks Hits A New Low

Before I explain what they’ve done to make me say that, I have to provide a bit of background information. You see, back in early August, Autism Speaks sent out this press release encouraging people to submit videos of autistic individuals for use in an upcoming film project. This project had huge names behind it— most notably, award-winning movie director Alfonso Cuarón, the man behind both Children of Men and the third Harry Potter movie— and was to be titled “I Am Autism.” According to Autism Speaks co-founder Suzanne Wright, this project was intended to “shine a bright spotlight on autism,” and was to be unveiled at the United Nations World focus on Autism on September 22.

Seems pretty harmless, right? “I Am Autism.” Sounds like it might be some sort of “We Are The World”-type production, about how we’re all affected by autism in some way. And “shining a bright spotlight”? I actually had a small gleam of hope that Autism Speaks was finally shedding their doom-and-gloom message for something more positive.

Well…

Diagnosis of a Faun

Determined outsider triumphs over mainstream medical, using a disabled artist as her protege/experiment. If not dance as therapy, the therapeutic effects of dance. Those are the storylines here; not Mr. Mozgala or even the piece itself — which, btw, I hope to see in June if not in December. So, here, we go.

Mozgala does not gain much space in the article except as a medical project with a weird gait: his CP has “caused him to walk for most of his life like ‘a human velociraptor,’ as he put it: up on his toes, lower extremities turned in, seesawing from side to side to maintain balance.” In fact, we don’t hear much about his acting career; he’s more of a specimen. Once, we’ve got the details of an enslaving CP out the way; the whole thing starts out with an outside: a choreographer who has done with with nontraditional dancers (my phrase) — the article’s author, Neil Genzlinger says “outside normal dance parameters. She sees Mozgala and is “inspired.” Yeah. That thing.

My Experiences with Vulvodynia

On the other hand, I found the medicalisation of my sex life difficult to deal with – in the end, I was dreading trying to have sex, and tried to only do so the weekend before an appointment because I knew that a doctor was about to ask how it was. I dread to think what the reaction would have been if I had admitted to seeking treatment for this condition while single; there was no opening for the possibility of non-straightness or non-monogamy. It wasn’t until I saw the final doctor, a sex counsellor, that anyone asked whether my relationship was good; even then, the focus was on returning me to a fit state to have penetrative sex and babies. (When I finally took a deep breath and said, “I don’t think I want to go on with this, I have no motivation to cause myself pain every day,” the counsellor replied that other women often went through with it because they were trying to have children. Fair play to them, but she didn’t ask whether I wanted children.)

In the news:
Ambulance Unable to find place for suicidal girl

A mentally ill, suicidal teenager was ferried around for hours by an ambulance crew because no NHS unit would accept her, the BBC has learnt .

The girl eventually had to be taken to a police cell, documents revealed under the Freedom of Information Act show.

Recommended Reading for December 4

This is the “Anna is tired” edition of Recommended Reading, where I link you to posts contributors have made elsewhere:

[ETA: Warning for Comment Fail in basically anything that wasn’t posted to one of our personal blogs. Not in all the posts, and not in all the comments, but just a head’s up.]

abby jean:

What is ableist language and why should you care? at Bitch Blogs
Emo: A hip way to police emotional expression at Bitch Blogs

Ouyang_Dan:
The Public Consumption of Britney at Bitch Blogs
Disability: The Human Condition at Bitch Blogs

Anna (that’s me!):
Four Ways to do it Right at Bitch Blogs
How to make your blog accessible in five not very complicated steps at Bitch Blogs

meloukhia:

The chemical coshing of sexuality at Guardian’s Comment is Free
All Glee, All the Time: Glee-ful Appropriation at Bitch Blogs, reviews of Glee: Hairography, Glee: Ballad, and Glee: Mattress at this ain’t livin’
The Transcontinental Disability Choir: True Blood: Sookie Stackhouse, Telepathy, and Disability at Bitch Blogs

annaham:

Disabililty Chic? (Temporary) Disability in Lady Gaga’s “Paparazzi” at Bitch Blogs
Popular Songs that Get Disability (mostly) Right at Bitch Blogs
Objectivity: Its Uses and Abuses at HAM.BLOG

Lauredhel:

Public Transport Authority takes crip-blaming to a new level at Hoyden About Town

Kaninchenzero:

[Disability] Taking Sides at Impermanent Records

Recommended Reading for December 3

Disableism Impacts Families

This choice that is being forced upon me is impossible. I must either tolerate physical pain at the hockey arena or emotional abuse at the dojo, if I want to be a part of my child’s life. It’s ironic that disabled mothers are often viewed as incompetent but where is the discourse surrounding the ways in which our parenting often occurs under extremely difficult situations? I suppose, of all the people on the planet that Destruction and his brother Mayhem provide the best reason for me to want to rise above, but the constant pain requires more of a super human effort than I believe that I am capable of.

Murphy’s Law And Disability: The Week From Hell

Normally, we get by. We get by pretty well. Provided we stick with the diet restrictions, usually we just switch off when one is a bit more able to get things done than the other. Chores basically go to whomever is in less pain at the time, or in less of a bad mental state or who can actually do them reliably without issue (like me defocusing and being unable to even read a recipe because I can’t keep on it). Usually even when the chronic shit we deal with is flaring the other one is just dealing with the baseline of the chronic shit for them, and the other disabilities coming up are all spread out over time.

Not this week though.

This week was the perfect storm of flare ups, semi chronic appearances and stress induced aggravations of all of the various things we deal with on a regular basis. While my partner fought off a pain flare, struggling just to walk, I was nailed with a “Richter 7? migraine.

Accessibility and Gaming: Randomizers

Most traditional six-sided dice may be tactile enough that someone who can’t see could feel the result. There are also special “Braille dice” available for not that much more than premium gaming dice; they’re more properly called tactile dice since the faces are traditional die pips and not true Braille numbers.

So, blind players can probably get their hands on accessible d6s, but to the best of my knowledge there are no tactile dice made for any other types of dice. Champions, anyone?

The wrong message – still

I don’t know who dreamed up the concept of “disability simulations” but they have been around for a mighty long time. My lifelong friend, Michael A. Winter, now the Director of Civil Rights for the U.S. Department of Transportation, first exposed me to the shameful practice. Michael and I were classmates at a segregated school for crips and met in 6th grade. We attended the same university. As undergrads, Michael formed a group called Wheelchair Action. When the Rehabilitation Institute at Southern Illinois University sponsored a disability simulation, Michael and members of his group stormed into the classroom and tried in vain to halt the fiasco.

Professionals who are nondisabled rarely stop to listen to the people who live with disabilities. I was proud of Michael for trying to get people to understand how destructive these simulations can be.

What Makes A Good Doctor?

Dean Tom Marrie is interested in hearing what kinds of qualities people value most in their family physician or specialist. What do you appreciate about your doctor? What do you think physicians of the future will need that might not be taught at med school today?

Recommended Reading for December 2

“[L]ook at who they are and how many of them are saying it”

When you ask for help, and other people assume it’s motivated by your being lazy or just a smartass, pretty quickly you learn to stop asking. If you started out wanting to please, and people around you keep jumping to negative conclusions about your motives, you may come to believe that you’re really a lazy smartass who could really do things without help (or clarification) if you tried.* If you repeately get told that you’re more than smart enough to figure out and do things on your own, you might start thinking this is so. If you’re told that you’re obviously too stupid to do something properly, you might believe it.

I really identified with some of Dave Spicer’s descriptions of how he learned to cope and make sense of things, growing up as an undiagnosed autistic.

Guess what I want for Christmas!

Yesterday, I read an interesting post on FWD/Forward, called Cerebral Palsy Humour? Not so much, in which the author Esté Yarmosh writes about the offensive pity crap she found on Café Press and Zazzle when she was looking for humourous graphics about disability.

In the comments, Codeman points towards even worse examples, Animals 4 A Cause, which is by far the most godawful “awareness” merch I’ve ever seen. It features daft pictorial puns like cartoon dogs that “Piss on Autism”, bulls that “Bully Autism”, an “Autism Stinks” skunk, and so on.

Ugh.

Wheelchair Tourism covered at conference

Dr Stumbo said her presentation would cover leisure, health and disabilities and remind tourist operators and hospitality managers about the importance of accessibility.

She said there was a misconception among these operators and managers that people with a disability did not use leisure centres or visit tourist attractions.

“They say, ‘we don’t have anyone with a disability come to our program or facility so why should we bother to become accessible?’

“This is a chicken-egg dilemma. Of course they serve people with disabilities. They are just unaware of the extent of it.”

Awareness Days

Hey, Hey, Hey, it’s Disability Awareness Day! Everyone gets a chance to see what it’s really like to have a disability! Yank out those blindfolds, grab cotton to stuff in your ears, and plop yourself in a wheelchair to navigate around an obstacle course! To get the most out of Disability Awareness Day, it is important to try almost all the disabilities on for size.

No doubt about it, life with a disability is a tragedy! Why these poor gimps, blinks, and others would be better off dead! They are so courageous and yet pitiful as they go about their daily routines. Yep, I’m so glad it is their fate and not mine . . .

Sadly, these are the misconceptions that the public holds about those of us who live with disabilities. Disability simulations do nothing but reinforce these negative stereotypes about persons with disabilities.

To Everything There Is a Season

It is not the film makers fault they have tapped into “disability = scary = violent = bad” and helped promote that concept in public consciousness. It is the fault of the disabled person pointing it out; that they’re refusing to rise above it. {Strong Black Woman, Strong Black Man, You’re So Strong If I Had That I Would Kill Myself, Model Minority, So Hard Working} They are refusing to not change the world, starting with themselves; namely their outlook, attitude and tone to something more positive.

Which frankly I read as ‘you should be less confrontational’, even though the original post wasn’t. It was simply pointing out a trope.

But more than that, something I do not think the individuals debating with the OP seem able to recognize, the tropes about what behavior is abnormal and thus scary and potentially violent and bad are actually based on either exaggerated behaviors within minority stereotypes OR they are based on behaviors regarding human states medicine in the past had no answers for; Those behaviors of course representing a gambit of symptomatology within another minority.

And, just another reminder that I’m always looking for posts to include in this. Because I’m only sporadically able to get into comments due to my schedule, it’s best to email me. anna@disabledfeminists.com . Feel free to send me your own links – I’m all for self-promotion!

Recommended Reading for December 1

Disability 101: The prison of ‘special’

Society expects that all people with disabilities will be loving and joyful and cooperative and that our very presence will bring inspiration and hope. That is our role. Everyone around us can feel good because of our loving presence.

Bull hockey. It is our prison.

We are not allowed to be contrary. We are not allowed to formulate an opinion that might be controversial. We are not allowed to protest. We are not allowed to complain.

No seat for disabled students on AMS Council [University of British Columbia, Canada]

Arts representative Matt Naylor explained that he opposed the motion partly because he was concerned that creating the seat would be out of line with the faculty-based system of AMS Council. “Creating any kind of non-voting seat for a specific constituency that isn’t one of the faculties has a lot of problems. We, as faculty representatives, should be the voice for all of our faculty, and we should be considering what is best for the society holistically,” he said.

“Creating special seats for special groups specifically dissuades that because they are responsible for articulating a viewpoint, and not articulating what they think is best for the entire society, so it creates a really fractious system.”

Naylor added that problems regarding representation lie in representatives’ engagement with their faculties, and not necessarily the structure of AMS Council. Councilors should make a larger effort to engage their constituents to make sure everyone’s voices are being heard.

Disability Fail of the Week

I’ve only ever used a wheelchair for a few weeks at a time, but I have made extensive use of walking aids like crutches and sticks. You have no idea of the panic that used to come over me whenever someone took my crutches away, saying, ‘I’ll just put these over here, out of the way. Just ask me when you need them.’ Because no matter how helpful and well-intentioned the person, taking my walking aids away took away my independence; my autonomy as a person. Without them I might as well have been tied to whatever chair I was sitting in. Taking my walking aids away made me dependent on THAT PERSON, and if they left the room or were busy or distracted (because this was most often said by a teacher in a classroom setting) I was left immobile and helpless. And yes, from time to time we all find ourselves in situations where we’re dependent on others, but for disabled people dependence is so often all that’s expected of them, so often the norm, that any time someone takes away some of their hard-fought-for Independence, it’s that much more hurtful. It’s bad enough when you’re prepared for it – when you’ve made the conscious if reluctant decision to trade a little of your independence for someone else’s convenience. When it’s unexpected, sprung on you because ‘those are the rules’ that can’t possibly be modified or tailored to your individual needs, it’s unbearable.

Not Taking Care Of Yourself

When you’ve been been taught thoroughly enough that you’re Just Not Trying Hard Enough by people sufficiently different that they cannot tell when you are putting in insane amounts of effort, you may start believing it. You may have trouble telling what your own limits are, much less working out a more suitable way to approach things based on how your brain really works. You may feel like you’re Not Really Trying up to the point that you collapse.

This is exactly what got my mother (not on the Spectrum, but not neurotypical either) into the state she ended up in. She felt compelled to ignore any kind of limitation–including chronic pain from undiagnosed bone cancer–until she just collapsed. Between years of getting dismissed by doctors, and refusing to see that she had any limits whatsoever–which also helped keep her from getting the care she needed–she spent years with a very poor quality of life, then died at 60. That really opened my eyes to the fact that I was running breakneck down the same path, and it scared the hell out of me. Especially since I’ve got the same kind of high pain tolerance, and my reactions are similarly atypical.

Denigrating Self-Diagnosed People Means Denigrating All Of Us

In certain circles of the Internet, it’s become fashionable to make fun of people with “Ass-burgers,” particularly those who are self-diagnosed. (I prefer to use the term “self-identified,” and will be using both terms here.) One needn’t look any further than various snark communities and “humor” pages. When called on their ableism, people who make these kinds of remarks tend to defend themselves by saying something like, “Oh, but I don’t mean to make fun of the real Asperger’s sufferers! I’m just talking about the people who self-diagnose just to have an excuse to act like a jerk.” Leaving aside the obvious ableism directed towards officially diagnosed people–you know, we “sufferers”–there are numerous other problems with that formulation, which I’ll try to cover in this post.

Reading List: Mental Health Diversion Courts

Yes, this looks like our daily Recommended Reading posts that Anna does for us every day – but it’s different. Reading List is a selection of links around a single issue or topic, as a start for those interested in exploring it further. The initial edition, on mental health diversion courts, was sparked when I came across the first article:

Susan Thornton, “A court for mental illness,” Denver Post, Nov 15, 2009

History will be made in Colorado’s 18th Judicial District this week when Colorado’s first districtwide adult Mental Health Court will convene to hear the case of “Robert,” age 37. Robert has bipolar disorder. He frequently goes off his medication, hasn’t followed through with treatment plans, has attempted suicide, and has been hospitalized three times. He has several prior convictions for shoplifting, violating restraining orders and resisting arrest. Now he says he wants to figure out a better way to live, and has volunteered for the Mental Health Court.

The court is a specialized treatment court designed to divert nonviolent felony offenders who have a serious mental illness such as bipolar disorder, schizophrenia or major depression, as well as those with a combination of mental illness and substance abuse. It is not open to those with violent behavior or to sex offenders.

Most of the people who’ll come before the court have been repeatedly in and out of jail. They’ve been charged with minor offenses that result from their mental illness, things like being a public nuisance, drinking in public, and shoplifting. They’re charged with a felony because of the cost of items they’ve stolen or damaged. Usually they have been off their medications because they can’t afford them, and live in and out of shelters.

Each participant will have an intensive treatment plan, including case management and medications, and will be closely monitored by probation officers and mental health professionals. Treatment addresses the mental illness, recurring substance abuse and criminal thinking. There will be incentives for compliance, and sanctions for non-compliance that may include re-sentencing.

This article by the Bazelon Center for Mental Health Law gives a good overview of why the current use of the criminal court system to address mental illness is so problematic, including these statistics on the scope of the problem:

  • Approximately a quarter million individuals with severe mental illnesses are incarcerated at any given moment—about half arrested for non-violent offenses, such as trespassing or disorderly conduct.” This does not include more than half a million probationers with serious mental illnesses.
  • Sixteen percent of state and local inmates suffer from a mental illness and most receive no treatment beyond medication.”
  • During street encounters, police officers are almost twice as likely to arrest someone who appears to have a mental illness. A Chicago study of thousands of police encounters found that 47 percent of people with a mental illness were arrested, while only 28 percent of individuals without a mental illness were arrested for the same behavior.

The same Bazelon article also has a nice outline of the role of mental health courts (as well as detailed analyses of different models of these courts and recommendations for improvements):

From the criminal law perspective, two rationales underlie the therapeutic court approach: first, to protect the public by addressing the mental illness that contributed to the criminal act, thereby reducing recidivism, and second, to recognize that criminal sanctions, whether intended as punishments or deterrents, are neither effective nor morally appropriate when mental illness is a significant cause of the criminal act. The goals of mental health courts, then, are: 1) to break the cycle of worsening mental illness and criminal behavior that begins with the failure of the community mental health system and is accelerated by the inadequacy of treatment in prisons and jails; and 2) to provide effective treatment options instead of the usual criminal sanctions for offenders with mental illnesses.

There’s also a nice overview of the mental health courts at Frontline, from their series “The New Asylums,” devoted to the stories and issues of people with mental illness in state prisons. The site lets you watch the whole program online and provides a separate complete transcript. There’s also an interactive state-by-state map so you can find information on specific states.

One reason these courts are becoming increasingly popular is because of their fiscal effect – it is more difficult and expensive to incarcerate a person with mental illness than a neurotypical inmate. For the super-wonky, here’s a detailed report from RAND on the fiscal impact of a mental health in Allegheny County, Pennsylvania. It found that the costs of providing treatment and services was more than offset by the savings in jail costs. The National Center for State Courts also has a great list of resources on these courts, including lots of studies on fiscal impact.

This is a big part of why there’s significant governmental support for these courts. The Federal Department of Justice provides assistance and resources to communities who want to begin mental health courts. The Council of State Governments Justice Center provides technical support and information to communities working with the DOJ, including a list of essential elements in a mental health court and a practical guide to mental health court design and implementation.

I am not nearly as familiar with court systems outside the US, but even some cursory googling shows that these exist in some model in places including South Australia, England (although the report notes they’re not achieving their potential), Canada, and, um, some places in the European Union.

I also include the significant caveat that the ideas behind and goals of these courts are only as good as their implementation, and that can vary a lot. Not every court is great and even if they worked perfectly, there would still be a lot of problems with the criminal justice system’s relationship with people with disabilities overall.

If you have information on mental health courts in other areas or other great resources, please drop them in the comments!

Recommended Reading for November 30

How to Survive Thanksgiving When You’re In Eating Disorder Recovery [I should have posted this earlier, but there are major food-related holidays coming up in December.]

During the holiday season, support from family and friends can significantly impact an individual’s ability to effectively handle these stressful situations. For those supporting someone with an eating disorder through the holidays, the Eating Recovery Center offers these suggestions:

Language, Stigmatisation, and Mental Distress

I recall from some years ago when a mental health survivor of the system told me about a meeting he had with script writers working on a soap opera. They were trying to create a storyline regarding a character and his psychotic breakdown culminating in him running amok brandishing a knife. The script writers were happy with the storyline and were engaging in a discussion with mental health users to see whether they had anything to add. The guy telling me the story said the other people he was sitting with just sat there totally gob smacked. One of them explained to the script writers that the current storyline as it stood only reinforced stereotypes and stigma (mental distress=psycho=knife wielding maniac).

After much patient explaining the penny eventually dropped, wasn’t so much an eureka moment when that happened. They changed the storyline, taking out the needless psychodrama for psychodrama sake. Wasn’t perfect, it still referred to stereotypes and your average psych textbook but at least they took out the knife wielding moment. My own view and I said it to the guy who told me the story is that this exposes lazy script writing as opposed to researching the realities of mental distress.

Disability & Virtual Worlds: Universal Life

The island was designed visually and experientially to offer the best benefit to users with disabilities, fully available to adaptive services and developed in accordance with Universal Design principles. The island contains the following features: wide ramps scalable for avatars in wheelchairs; bright high-contrast signage more easily trackable by users with visual impairments; smoothly landscaped walkways to accommodate many types of users; and training offered in small sets to decrease fatigue.

Testing was performed in stages, with the first challenge being how to best present signage. Signs needed to be readable by the default camera view, which is angled downward at roughly 15 degrees from eye level, so all signs in the island’s Orientation Centre were compensated for the height of avatars using wheelchairs. The standard view in Second life includes the avatar in the frame, so signs were placed high off the ground. Paths and walkways were designed with as few stairways as possible, with no bumps that would make an avatar trip while walking. The surrounding land was modelled to meet the paths as closely as possible.

In the news:
Man builds stair climbing wheelchair

“It used to take us a good half an hour to walk downstairs from our fifth floor apartment to the ground floor after her injury,” he said.

“I realised that what she needed was an electric wheelchair that could go up and downstairs but such a thing didn’t exist.”

So, despite a complete lack of mechanical knowledge, Li sold his apartment for £44,000 to fund the project.

The wheelchair as a weapon

And though the 38-year-old father of two quickly learned sporting activities such as hand cycling and sit skiing, it wasn’t until he took a new self-defence class for wheelchair-users that he began to feel at ease with his new paralyzed status.

“When you become a paraplegic and are in a chair, physically your world changes. You’re looking up all of a sudden,” he says. “(The class) was a great way for me to get to know my body again, to get comfortable in the chair and to build up a sense of confidence.”

Recommended Reading for November 27

via Elizabeth Kissling at re:Cycling: Mental Illness in Academe

The first question you must ask yourself is whether to tell your chair and dean. I can think of arguments both in favor of that, and against.

One of the pluses would be the psychological benefits of not having a secret and being able to be open. More practically you might be able to get extra support, or formal accommodations under the Americans With Disabilities Act (ADA). You would serve as a model for other academics in your department and your students.

There are, of course, real pitfalls to telling, too. There is a tremendous stigma, still, around mental illness. People may believe, consciously or not, that you are unreliable or even dangerous, and they may fear you. They may think you can’t do the work or your scholarship isn’t good, even if it is very good. That may not be intentional on their part but can nonetheless have a big impact on your work life and your prospects for tenure.

Quickhit: Athlete Kurt Fearnley lambastes abusive Jetstar wheelchair policy

There are lots and lots and lots of problems with the way people with disabilities are treated while travelling. This is just one of them.

Talking About FSD – How Not To (Part 2)

But because folks like she and I exist, people with “Real” medical problems (and here I’m using quotes because I’m not comfortable with claiming my problems are more real & valid than anyone else’s, just because I can back mine up with medical records, which have also been and will continue to have their value questioned anyway,) we are putting everyone else at risk of exploitation by Big Pharma. Because I want treatment for my sexual health problems, I bear the responsibility & burden of enabling Big Pharma sneaking its phallic tendrils into all of our bedrooms & regulating our sexuality. That regulation might come in pill form designed to increase our libidios – but never too much, for if we become too sexual, too promiscuous, we may just be diagnosed with the dreaded Restless Vagina Syndrome.

I was really curious; is Big Pharma really trying to develop and then exploit a new, fake disease, by piggybacking on something that sounds similar to restless leg syndrome? (Only, it’s the vagina that’s restless.) What is this?


Digital inclusion, disabled audiences and web accessibility through personalisation

There are 11 million adults in the UK with a long standing health problem or disability that affects their daily activities including their ability to work – and therefore covered by the Disability Discrimination Act. Of these, according to research from the Office for Disability Issues, 47% are over 65 and 43% are unemployed. Startlingly, 58% have never used the Internet.

Jonathan talked about the various barriers to disabled people getting online including lack of interest, lack of means and lack of confidence. These are the same reasons as for the population at large. BBC research into encouraging broadband adoption echoes the experiences of Martha Lane Fox. They focussed on the 21% of UK adults who do not have the Internet at home or use elsewhere. The figures are similar: 10.5 million aged 15+ with and average age of 61 (over half were 65+) and 67% are C2DE compared with 45% of the UK population.

Only one in five disabled students has received vital funding [UK]

Government statistics released today show that the SLC has so far distributed £43m less in funding than last year, despite an unprecedented rise in student numbers – and applications for grants and loans – in the past 12 months.

The Guardian has learned that more than 12,000 disabled students have also been left without vital funding for specialist equipment and to pay fees for personal helpers. Campaigners are now claiming progress is so slow that it would take 75 weeks to clear the backlog.