Monthly Archives: November 2010

Happy post: Winston

Image shows a small silver and blond Yorkshire Terrier with its two front legs up on a railing in an outdoor setting, its red leash off to the right side. It is photographed from a high angle

[Image description: image shows a small silver and blond Yorkshire Terrier with its two front legs up on a railing in an outdoor setting, its red leash off to the right side. It is photographed from a high angle.]

I’ve been meaning to write this post for a while, and have never quite known how to start it. I’ll start with this: like a lot of PWDs, I have a pet. I’m sure that posting something about one’s beloved dog on what is a strongly political site seems unusual, but as of late I have been reading many dog-related blogs (mostly on Tumblr) and am consistently moved by posts where the submitter talks about their pet and some of the many varied aspects of the human/animal bond.

I have a pretty old (for the breed) Yorkshire Terrier named Winston. While he is not a service dog (he is too ill-behaved to ever serve in that capacity, and I suspect that fibromyalgia is not a condition that qualifies for a service animal!), he makes my life immeasurably better. Oh, he’s kind of a brat, but his general attitude is so completely, bizarrely happy most of the time that I can’t help but smile whenever he’s around. Yorkshire Terriers are supposed to be one of the smarter (albeit louder) small breeds, but Winston is not the brightest bulb around. This is not a bad thing, however — his other personality traits make up for the fact that he can’t do very many tricks (outside of sitting, particularly if food is involved).

Small dogs, in general, may seem like they’re a pain in the ass to take care of, at least to outsiders. Certainly, there are some small dogs with very high energy (I’ve met a few) who need to be walked multiple times per day so that their owners can get some relief from the dogs’ barking or constant need for attention. Fortunately for me, Winston is not one of these. He has a lot of energy, but this is mostly because he sleeps upwards of 10 hours per day. On days when I’m not feeling well and need to lie down or take a nap, Winston is more than happy to hang out. If I am in too much pain to take him on a long walk, he seems perfectly happy with a shorter walk. All things considered, he’s a pretty mellow, fairly agreeable little dog — except for when he sees other dogs, which is very often an occasion for over-excitement, and possibly a lot of barking and/or straining on the leash.

Somewhat hilariously, he also snores. Loudly.

Honorable James Mwandha, Disability Rights Activist, has died

Via email from the Global Partnership for Disability and Development

Dear Friends,

I have received the shocking news from Uganda of the Death of Honorable James Mwandha. He has been suffering from Post Polio syndromes and Pressure. The World Disability Movement has lost an Asset. May his soul rest in eternal peace. I kindly request One Minute of Silence in recognition of the work done by Mr James.

Personally Mr Mwandha inspired me and he always welcomed My ideal of inclusion of youth with disabilities in the development programs.We shared the same name and he used to tell me in workshops that work hard to impact the world.

From 1989 to 2006 Mr James served as a Member of Parliament in Uganda, representing People with Disabilities. In Parliament he belonged to several Parliamentary Committees some of which he Chaired.

He was instrumental in initiating legislation for the protection of rights of Disabled Persons in Parliament. He was leader of Uganda’s delegation to the United Nations (UN) Ad Hoc Committee on the Convention on the Rights and Dignity of People with Disabilities from 2002 to 2006. He was a member of a group of Parliamentarians and ex-Parliamentarians who contributed to the compilation of the Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities published by the inter Parliamentary Union.

At the time of his death,Mr Mwandha has been the Chairman of the Commonwealth Disabled Peoples Forum (CDPF) made up of Disabled People’s Organizations (DPOs) in the 53 Commonwealth Countries to advocate for the rights of Disabled Persons and promote the ratification and implementation of the Convention.

In Uganda, Mr. Mwandha has been the Chairman of the National Steering Committee on the implementation of the African Decade for People with Disabilities 2000-2009 and Chairman of the Uganda National Action on Physical Disability, a National DPO in Uganda and actively engaged in disability rights advocacy in Uganda.

Yours in Disability Services.
James Aniyamuzaala, Rwampigi
Human Rights programme coordinator
Youth with Physical Disability Development Forum

Recommended Reading for Wednesday, November 10

I am apparently a month behind as I originally dated this for October. Oh self. If it were October, I wouldn’t be so far behind! Wishful thinking?

Captain Kitt at A Gentle Nerd of Leisure: Our Mental Health System? More Mental than Healthy! (Note this post also includes discussion of eating disorders, self harm, and sexual assault but mostly focuses on experiences within the Australian mental health system) (via vass)

Thing is, often those services are really hard to access! I’m great with search engines – thanks to a librarian Mother – so it’s easy for me to find where the services are. Actually getting help from them? Not so easy.

Laura Hershey at Spinal Cord Injury and Paralysis Community: Fairness for Attendants: Enacting Justice in an Unjust World

We can start by acknowledging the profound disconnect between the importance of the work and the compensation it offers. In understanding and analyzing this, we can call upon a radical understanding of how disability justice and worker justice intersect. Providing hands-on personal care has acquired over the years an aura of sentimentality. People are assumed to do such work out of pure compassion (which translates as pity), or because “it’s so rewarding” (rewarding in a vague, emotional, non-material sense). Within this framework, disabled people embody neediness, while support workers cheerfully fulfill our needs. Disabled people are passive objects of support workers’ active “caregiving.”

Elizabeth McClung at Screw Bronze: Aren’t You Proud?

We are, disabled and Able Bodied, all types of bigots, and one of the most supported forms of bigotry is how we encourage each other to give in to our fear of illness, and altered human function and form. Drool, and averting the eyes is ‘doing you a favor’ – haha. Yes, because having everyone glace, look away and then talk about you, because your being alive makes them uncomfortable is helping me? No, helping them. It is no different than spotting who the odd one is in grade school, and somehow, they end up with no friends. They are stared at. They are, as you will well know if you were one, asked, “Why do you keep coming?”, and the idea of invitation to a party, or even having anyone show up at one you host is laughable.

crabigail adams at if you don’t have anything nice to say, come sit here by me: i am disabled

of course, this is a fixed income. if i find one day that it’s not enough money to get by, i don’t have any options. i can’t apply for a better-paying job. i can’t further my education in hopes of a professional career & the attendant boost in income. this is it. & there are other caveats as well: if i ever decide to live outside the united states, i lose my disability money altogether. if i ever get legally married, the government will pull the extra money i get from the disabled adult child program & i’m back to just my $525 or so in disability money. i would have to rely on my partner to support me financially, which is a lot to ask of someone, & which is something that makes me very uncomfortable. i’m not sure what the rules are around having assets (ie, if i were to sign a mortgage, even if i wasn’t the sole person responsible for paying down the mortgage). i’m not sure how social service programs i may be eligible for if i were to have a child (ie, WIC) would impact my social security income.

Casekins at If My Hands Could Speak: Martha’s Vineyard – Utopian Society (Caseykins is not Deaf – I’m linking this because the history is very interesting.)

The prospects for deaf people on Martha’s Vineyard were completely different. Many of the former residents of the island were interviewed, and they paint an idyllic picture of what it was like to live in Martha’s Vineyard during this time. Because everyone had a deaf family member, everyone in the community knew sign language. Deaf people were farmers, store clerks, anything they wanted to be. Hearing people would sign to each other over the large expanses the island farms created, a deaf person could walk into a store and the clerk would always know sign. Deaf people were even elected to high political office, becoming mayors and council members for the island, a thing unheard of in the rest of the country. When telling stories about the community, the people who were being interviewed could only remember after much prompting if the people they were talking about were hearing or deaf.

I’m closing comments on this one because I’m hip-deep in alligators (do people still say that?) and I always feel bad when people’s comments sit on Recommended Reading posts for days until someone can look at them.

Record of the Dead for October 2010

Please note that this list focuses on the murder of people with disabilities.

This list of October 2010 media reports about people with disabilities murdered or dying under strange circumstances is presented without commentary, but that doesn’t mean that there’s nothing people may want to discuss about it in comments. I do not believe for a moment that this list is complete. It is sorted alphabetically by last name. Almost all links are to news reports.

Salvatore Agostino, 73, undefined disabilities, Tampa, Florida, October 20. “Upper body trauma”, Agostino’s store was robbed as well.

Karandeep Arora, 18, blind with difficulties walking, Delhi, India, October 24. His parents strangled him before killing themselves. [More details about this case.]

Alan Atkin, 62, undefined disabilities, Darlington, United Kingdom, April 2010. Beaten to death in his home. [More about this case]

Zahra Clare Baker, 10, Deaf, cancer, prosthetic limb, Hickory, North Carolina, sometime after 9 October. As of this writing, Zahra’s body hasn’t been found.

Jessie Buchsbaum, 17, learning disabilities, Boyertown, Pensylvania, October 25. Jesse committed suicide after being bullied by classmates for being disabled.

Damian Clough, 12, autism and “learning difficulties”, Keighley, England, April 4, 2009. Died in a deliberately-set house fire. The inside handle on Damian’s bedroom door had been torn off. [More details about this case.]

Byron DeBassige, 28, schizophrenia, Toronto, Ontario, February 16, 2008. Shot by police in a confrontation over two stolen lemons.

Mario Eder, 55, spinal cord injury, speech difficulties, unspecified cognitive disability, Waianae, Hawaii, US, October 1. House fire.

Linda Gibbs, Oklahoma City, Oklahoma, October 5. Hit by a car while crossing the street.

Brian Goh Kah Heng, 19, Petaling Jaya, Malaysia, October 23. Severe internal injuries and bruises, ruptured spleen and severe injuries to his anus. The care center where Goh was living has since been closed.

Kevin Geyer, 19, undefined cognitive disabilities, Wilkinsburg, Pennsylvania, October 26. Shot in the back during an apparent robbery.

Francecca Hardwick, 18, “severely disabled”, Barwell, England, 2009. Mother killed herself and Francecca after years of bullying, police are currently being sued for not doing anything to end it.

Ernie Hernandez Jr., 37, “developmentally disabled”, Modesto, California, August 14. Stabbed to death.

Philip Holmes, 56, undefined physical disabilities resulting from a work-related accident, Rhyl, Denbighshire, United Kingdom, April 16, 2010. His body was discovered by his caretaker, having been “severely assaulted.”

Patrick Johnson, 18, “had the intelligence level of a 5- to 7-year-old”, Philadelphia, Pennsylvania. Died after police used a “stun gun” twice on him, after being called to assist the family.

Courtland Lucas, 32, heart condition & pacemaker, St. Louis, Missouri, May 25, 2009. Died in jail because he was not given the medication he needed to survive. Other cases of people with disabilities in prison not receiving the health care they needed are also discussed in the news report.

David Lauberts, 50, undefined disabilities, Greeley, Colorado, Sept. 25, 2009. Apparently died sometime before the house fire his brother set to hide the death, Lauberts was found to have bedsores that had eaten through to his bones.

Jonathan Lowbridge, 20, undefined psychiatric-related disabilities, Reading, Berkshire, UK, May 23, 2008. Lowbridge was a voluntary patient who was supposed to be under close supervision due to suicide attempts, he escaped from the hospital and killed himself.

Shannon McLean, 39, “a rare disorder that left her immobilized and in bed nearly 24 hours a day”, Caesarea, Ontario, October 3. House fire.

Wieslawa Zofia Pytlinski, 57, undisclosed disabilities, Knox County, Tennessee, October 4. She died “of multiple blunt force trauma to the upper body”, murdered by her boyfriend.

Donnie “Butch” Phillips, 50, “developmentally disabled”, Wilkesboro, North Carolina, September 29. Choked to death on an outing from his group home. His caregiver has been charged with second-degree murder.

Brian Sinclair, 45, “double amputee with a speech impediment”, Winnipeg, Manitoba, September 19, 2008. Died of a bladder infection while waiting in the emergency ward of Winnipeg’s largest hospital.

Jaffar Shah, “lost his legs in a car accident”, Nazimabad, Sindh, Pakistan, October 22. Shah, a disability rights activist, was shot while playing with his 2 year old son outside his home. His death sparked multiple protests.

Joanne Sexton, 56, undefined disabilities that included being hooked up to oxygen tanks, Springfield, Massachusetts, October 19. House fire.

Henry David Vernon, 55, “deaf, mute, developmentally disabled and mentally ill”, Tacoma, Washington, July 29, 2009. Hyperthermia while in a group home. His temperature had reached 107 F/41.7 C.

Leonard Alfred Willson III, 53, paraplegic, Bath, South Carolina, sometime in the week before October 7. Murdered. Two people have been charged in his death, one of whom Willson was tutoring in school.

Lemuel Wallace, blind and cognitive disabilities, Baltimore, Maryland, February 4, 2009. Gunshot to the head. “A year and a half after Baltimore police uncovered a murder-for-hire scheme in which they say two men conspired to kill a blind and mentally disabled man for insurance money, detectives believe they have found the man who pulled the trigger.”

News Reports regarding allegations of abuse in long-term care homes:

Group Homes Owner Faces Loss of License

  • Failing to prevent a Northwest Care resident with a known history of drinking potentially harmful liquids from doing it twice: first a bottle of floor cleaner and later a 1.75-liter bottle of mouthwash containing 26.9 percent alcohol. The resident was hospitalized after the mouthwash incident with a blood-alcohol level of 0.42 percent — more than five times the legal limit
  • nadequately supervising group home residents, including three who were left alone at a community basketball game; one who was left in a hot, locked car and unable to get out while a staff member went shopping; and another who was found wandering in the street at 3:30 a.m. after a staff member had fallen asleep.
  • Locking a Northwest Care resident alone in his room for two hours despite his reported screams to be freed. Investigators said the facility had previously used this type of discipline in violation of state law and had reversed the resident’s door handle so it could be locked from the hallway.

Daphne Campbell: Big Debts, Shady Dealings

  • M.C., 48, “mentally challenged” and schizophrenia, died after being raped, October 12, 2006
  • In April 2006, a resident at a home in Lehigh Acres was admitted to a hospital with a facial cut and a fungal infection. He passed away soon after.
  • In July 2006, a resident at the same property perished after choking on a peanut butter and jelly sandwich.
  • In August 2006, a man living in another of the Campbells’ group homes in Miami expired of a suspected bowel obstruction two days after entering a hospital.

Recommended Reading for November 9, 2010

John Keilman for the Los Angeles Times: Technology opens new horizons for disabled

Yet for all of technology’s promised advances, some worry that the cost will keep helpful devices out of many people’s reach. Others are concerned that governments, schools and institutions might think that high-tech gadgetry has relieved them of their responsibility to serve the disabled.

“Technology is not a solution for every problem,” said Paul Schroeder of the American Foundation for the Blind. “It doesn’t replace the need for quality teaching. It doesn’t replace the need to teach social skills.”

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: Paranoid Schizophrenia: Worst Disease in the World

During the tail end of my psychotic break with reality, I came to believe that there were zombies after me, ready to kill me in order to take over my body. My fear of them taking over my body eventually became so great that I decided to go to the local hospital emergency room, where I thought I would be safe from them.

Liz Sayce at RADAR Network: Health and safety: Stifling disabled people’s independence?

As politicians queue up to cite ever more ludicrous examples of health and safety excesses – making kids wear goggles to play conkers, cancelling historic Gloucestershire cheese rolling events, stopping trainee hairdressers having scissors – those of us living with health conditions or disability sometimes hesitate about which side of this argument we are on.

On the one hand, selected stories like this, designed to justify scrapping regulation, can – as the NASUWT just put it – play politics with children’s safety or put workers at greater risk. On the other, there is a massive history of health and safety being used as an excuse to stop disabled people from doing things. So – whilst I hesitate to join all the people selecting examples of health and safety excesses – we do need to look them in the eye.

Irish Deaf Kids: The Salamanca Statement and EPSEN Act (2004)

A key point:

“regular schools with this inclusive orientation are the most effective means of combating discriminating attitudes, creating welcoming communities, building an inclusive society and achieving education for all; moreover, they provide an effective education to the majority of children and improve the efficiency & ultimately the cost-effectiveness of the entire education system.”

allama at give the feminist a cigarette: Women as sociological ducks

In The Dustbin of History, Greil Marcus warns of the risk of losing sight of individual genius when talking about the blues: yes, it was created in response to slavery and oppression, but centuries of slavery and oppression only produced one Bessie Smith. Seeing Strange Fruit as the inevitable product of the horrors of American history denies the incredible personal achievement of Billie Holiday. And painting female depression as simply a product of the patriarchy denies the personal experience of mental illness to every single sufferer.

incurable hippie at Where’s the Benefit? Round-Up Post

There are plenty of must-read articles and blog posts which I haven’t had the time or the spoons to cover. All of the following are well worth a look.

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Recommended Reading for 08 November 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.

abledbody: Five Tips for Disabled Job Seekers

The federal government has stepped up efforts to help the disabled find jobs. President Obama has called for 100,000 people with disabilities to be hired in the federal workforce in five years, and now requires federal contractors and subcontractors to take affirmative action and open employment to people with a disability including disabled veterans. Consider a federal job or a job with a company that does business with the government. The federal Office of Personnel Management has job listings.

BBC — Ouch!: Wheelchair wedding, fun, and love

We wanted a place with enough crip loos and space to accommodate over 150 people, many of them wheelies. When we asked venues if they were wheelchair accessible, most of them assumed we meant for our grandparents, not one of the brides. And as for their definitions of ‘access’: “No problem! Just come in through the kitchen and we’ll find two strapping young waiters to carry you upstairs to the lift…”.

Donna Jodan: Barriers to recreational sports

I am not sure if these barriers could be overcome but they can definitely be made easier to deal with.  How so?  We need to enlist the assistance of the sighted world.  We need to make our requests and ask for help.  We need to convince the sighted world that there is a definite benefit to making recreational sports available to the blind and sight impaired.  A few months ago, I attended a Ski for Light event in Utah and what an experience it was.  I invite you now to visit this website and see for yourself. www.skiforlight.org.

Women and Hollywood: I am an actor. I am also deaf: Guest Post by Shoshannah Stern

I am an actor. I am also deaf.

I have played roles written for deaf actors and roles written for hearing actors, when I was lucky enough to have people who believed in me enough to rewrite them to suit me. I am very grateful to have been in this industry for eight years.  During that time, I’ve experienced challenges, triumphs and changes – some relating to being deaf, but most related to being an actor in Hollywood searching for the right parts at the right time. I always try to learn what I can with every experience I encounter and hope at the end of the day, that I have done my best to overcome them.  It is my sincerest hope with all that I have learned and been fortunate enough to do, I will continue to do everything I can to accept strong roles and positively represent the deaf community on and off the screen.

Two Links, One Topic Bonus!

Change.org’s Health Blog: IRS Does Not Consider Breastfeeding To Be Medical Care

Ask any pregnant woman or mother, and she’ll be able to recount the numerous health benefits of breast feeding. It can pass along mom’s antibodies, imparting important immune defenses that can prevent sickness and even death in newborns. It’s the most complete form of nutrition for a baby, far exceeding formula. And breastfeeding may even help mom’s health; research indicates that women who breastfeed may have lower rates of certain breast and ovarian cancers.

Yet that’s not good enough for the Internal Revenue Service, who won’t allow nursing mothers to use their tax-sheltered health care accounts to pay for breast pumps and breastfeeding supplies. As reported in today’s New York Times, this is because the IRS ruled that breast-feeding “does not have enough health benefits to qualify as a form of medical care.”

From the Women’s Rights blog: IRS Denies Breastfeeding Qualifies as Medical Care

Yet as Brie Cadman writes on the Health blog, the IRS has decided that breastfeeding “does not have enough health benefits to qualify as a form of medical care,” and thus cannot be included in the tax-sheltered health care accounts that many companies offer their employees. But support hose? Totally qualifies.

Breastfeeding equipment can tally up to $1000 a year, which isn’t anything to sniff at. Yet the only way a woman can get tax breaks on this expense is to secure a doctor’s note calling breastfeeding a medical necessity in her case. This deters women from breastfeeding, despite its host of medical benefits, passing on immunities to the baby and reducing the risk of certain breast and ovarian cancers in mom. The idea that a woman needs to secure a doctor’s note calling her individual case of breastfeeding medically necessary is absurd: while breastfeeding is not the sole option for women, it is without a doubt medically beneficial for just about any mother to decide on, and certainly as necessary as pimple cream.

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.

Disability Activist Annie McDonald has died

I have only just learned, via Vass, that Australian Disability Activist Annie McDonald died late last month at age 49.

Annie has gone but her legacy and fighting spirit live on

Annie was the tiny girl with severe cerebral palsy, institutionalised since three, whose intellect was assumed to be as dysfunctional as her body until, with Rosemary’s help, she persuaded the Supreme Court she had the wit and maturity to decide her future.

It was a huge story. When Rosemary cradled 18-year-old Annie – then the size of a five-year-old and weighing just 16kilograms – and helped her fight violent spasms and guide her hand to spell out her wishes, who was really speaking? ‘‘It was like the Lindy Chamberlain case,’’ recalls one old friend. ‘‘Everyone had an opinion.’’ The notion of intelligent life trapped in such a body distressed, and for many, including some of Annie’s family, beggared belief.

The court released Annie from St Nicholas’ Hospital – ‘‘hell’’, she called it – and she went home with Rosemary and Chris. There the book ended, but not Annie’s story. What happened next spills through the colourful rooms of their house.

Accessibility is Not An Individual Problem

If you spend a lot of time talking or writing about accessibility, someone will eventually tell you this apocryphal story:

When Steven Hawking (and it’s always Steven Hawking) started teaching at Cambridge, they needed to put in ramps in all of the buildings, since they all had those beautiful huge sets of stairs as the only way in. One security guard (and it’s always a security guard) protested. “What are you doing that for? I’ve been working in this building for 30 years, and not once have I seen anyone in a wheelchair come through those front doors!”

(I know when people tell me this story I’m supposed to laugh. It’s kinda hard, though: I’ve basically been told exactly that by university administrators; professors; graduate students; student representatives; municipal, provincial, and federal candidates and elected officials; bus drivers; taxi cab drivers; small business owners; large business owners; Fox news commentators; bloggers of a variety of political stripes; apartment building managers; independent book store staff; national chain bookstore staff; people who run on-line campaigns, tea shop staff, coffee shop staff….)

I think what I’m supposed to get out of this story is the ha-ha, look at the ignorant person.[1. I’m not particularly exploring the class issues here, but that’s only because I’m focusing on disability and not because I don’t think they’re there. Of the dozen or so times I’ve been told this, roughly half have had the teller start mimicking a “lower-class” accent when repeating the security guard’s words.] What I end up getting out of this story is that the burden of pushing for something to be accessible pretty much consistently falls on people with disabilities themselves. We have to ask because no program, no building, no website, will be willingly designed with the idea that people with disabilities are part of a broader target audience. Only websites, buildings, and programs aimed right at people with disabilities will do so. [1. Before the website upgrade last month, the only page on my entire university website that passed an accessibility challenge was the Student Accessibility Office website. Because of course that’s the only website that a student with a disability will look at, right?] (Until laws are passed, of course. And even then the law will be only grudgingly followed.)

Accessibility is often treated like a favour that non-disabled people do for (or even to) disabled people, one that is given out of the goodness of one’s heart. It’s an individual’s problem to bring up, and the solution is for individuals to come up with.

This attitude comes up in lots of different ways, both online and off. To focus specifically on what larger entities do:

– The issue of subtitling the political ads on YouTube is brushed aside because D/deaf people apparently don’t complain enough about subtitling for politicians to bother subtitling their ads.

– I am on the planning committee for a conference and was told that if actual disabled people signed up for the conference they would bother moving one of the events to a wheelchair accessible space, but otherwise they’d keep it in the room down a flight of stairs because it’s a nice room.

– As I have also pointed out before, having your requirement for receiving funding to complete your education being “student leadership” while simultaneously telling students with disabilities that they’re not able to attend events that are sponsored by the university (which is what having your event up two flights of stairs not suitable for “the very elderly or disabled” is doing) is telling students with disabilities that they can’t get the funding to complete their education. And yes, student funding in Canada is increasingly tied to poorly-defined “student leadership.”

When I point out these issues, I’m often told that these are individual problems: D/deaf people need to complain more! More people with disabilities need to attend conferences! Here, let me give you a list of individual solutions! It basically asks people with disabilities – people who already have a lot on their plate – to do more. And it often puts people in the situation where they may find a solution for themselves, but it’s one that leaves everyone else – whether friend, ally, or fellow traveler down the road – to sort out their own individual solution. To re-invent the wheel every time.

This isn’t the way this needs to work.

How it needs to work: Assume people with disabilities exist. Just like we assume people without disabilities exist.

So, politicians should make their political ads with both disabled & non-disabled people in mind, and thus the idea of subtitling isn’t one that’s new or unusual to them, it’s one they thought of all along. (Bonus points: maybe they could think of actual disabled people when making their platforms, too.) Plan events without assuming that everyone attending is going to be non-disabled. Then no one has to say “I’m disabled, I can’t go down a flight of stairs.”

We don’t act like putting a door in the front of our building is a favour we are doing. We assume that doors are necessary. And yet, people treat having a ramp to that door as a favour they are doing, when the ramp serves the same purpose: it allows people to come inside.

Recommended Reading for 05 November 2010

Advert for the National Suicide Prevention Lifeline. A green and black print on a white field. Text reads National Suicide Prevention Lifeline (the "c" is a telephone handset), and the phone number 1-800-273-TALK (8255). The web address "suicidepreventionlifeline[dot]org" is underneath.
An advert for the National Suicide Prevention Lifeline in the U.S. 1-800-273-TALK (8255). Press "1" for veterans in the U.S.
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.

Moderatrix Note: Please kindly consider this the 05-06 November RR. I simply added the incorrect date in the title. My apologies. Also, thanks to Indigo Jo for pointing out that I forgot to add the Daily Record link, which has now been added.

pinkpjs guest posts at Where’s the Benefit?: ‘Not Really Disabled’

As part of my job I had to attend a meeting with a manager working with
the DWP who told me that their role was to support disabled people to
receive benefits they are entitled to.

I asked them about the changes to DLA in particular and the impact of
people in residential care and was shocked to be told that ‘they don’t
really need the mobility allowance as most of them rarely go out except
to medical appointments and then the staff are more than happy to take
them, so it is only fair that they shouldn’t get this’.

Then, the response to my question about any other changes to DLA which
the condems have hinted at, was ‘well, we all know that many people
currently getting this really aren’t disabled and shouldn’t be getting
it’.

Planet of the Blind: Shame On Ohio’s Cedar Point

[Excerpt] Call ’em crazy, but Cedar Point won’t alter or remove any of its attractions, despite a request from mental health advocates to do so.

A Cedar Point spokesman said “changes are not required.”

On Thursday, the National Alliance on Mental Illness asked the amusement park to immediately remove two offerings focusing on fictional mental health patients: Dr. D. Mented’s Asylum for the Criminally Insane, and The Edge of Madness: Still Crazy.

One is a haunted house, the other is a separate show.

The attractions promote the false stereotype that the public should fear mental health patients, the alliance said.

Navy SEASs Blog: VA Releases Suicide Prevention Street Ad

One of the resources available to service members or friends and loved ones of those who need help is the National Suicide Prevention Lifeline – 1-800-273-TALK.

post on the website of the Department of Veterans Affairs (VA) shared the efforts of the VA to ensure that people know about the Lifeline. Last week, almost 1,200 ads that carry messages of hope for service members facing emotional crises, and details for the Suicide Prevention Lifeline, were put up by the VA on city buses, bus shelters, rail and subway stations across the country.

Daily Record: Parents tell how every day is a battle to care for teenager struck down with chronic fatigue syndrome (sent in by Indigo Jo)

Just getting a diagnosis of ME, otherwise known as myalgic encephalomyelitis, was a battle for the family. When it finally came in October 2005, Carol said she was shocked by their GP’s reaction.

She explained: “Eilidh was being treated for asthma but I knew something wasn’t right and her teachers agreed.

“When I took her to the GP he said, ‘Right, that’s enough of all this’ and told Eilidh to go and run round the building three times.”

Minutes later dad Blyth, also 46, found Eilidh outside in a distressed state but the GP wouldn’t accept that she couldn’t carry on.

Carol said: “He told her to run through the waiting room. After that, they said she had chronic fatigue syndrome and would recover in six months.”

Four years on, her parents had to fight to stop Eilidh being treated as a psychiatric patient. Now the family, from Glenrothes, Fife, complain doctors seem to have washed their hands of them.

Carol said: “The paediatrician told us the ME has been dealt with and it’s all down to anxiety. They always fudge over the physical illness.”

ABC News (Australian Broadcasting Corporation): Social networkers switch off for autism awareness (sent in by Kathryn Bjornstad)

Ms Bjornstad says the people behind the Communication Shutdown “meant well”.

“But it’s more of the kind of advertisement and philosophy that is harmful to the autistic community,” she said.

“It ignores the fact that autistic people are actually less socially isolated because of inventions like the internet, and it does a poor job of explaining what autism is like.

“Staying off of Facebook will not mirror the social isolation that many autistic people face. I don’t think that anything they do could mimic this.”

Ms Harvey says she can understand why members of the autistic community have expressed concern.

“Our aim was to create empathy in the wider community. There’s no way that we would ask autistic people to give up their tools of communication,” she said.

“There are a wide spectrum of opinions.”

Ms Harvey says she is glad the Communication Shutdown has prompted events like Autistics Speaking Day.

“Although our executions are paradoxical, we believe we have the same goal,” she said.

“I would hope that the two events can complement each other,” she said.

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.