Category Archives: autonomy

Oh Canada: This week in Canada & Disability

anna rants, autonomy, bodies, disability activism, invisibility, representations, television, , , , , , , , ,

It’s been an interesting week or so in Canada regarding issues around disability. “Interesting” here means hit and miss.

I could, for example, direct you to the coverage of the Paralymic Games, but that site appears to be inaccessible to screen readers. It’s very busy, and has a lot of flash on it. There’s an audio slide show – the first I’ve ever come across – but you need to download something in order to run the audio.

So, hit and miss there, I guess.

Of course, then we get this story: No sugar-coating for disability exhibit: Co-curator’s trip out west parallels struggle to overcome obstacles in Out from Under

For disability rights activist Catherine Frazee, the personal overlaps with the political even when she doesn’t intend it.

That happened with Frazee’s recent journey to Vancouver from Toronto for Out From Under, a unique exhibition on the social history of disability in Canada.

As one of its three curators, she felt it was important to be here for the exhibition’s opening during the Paralympic Winter Games.

Frazee, the director of Ryerson’s Institute for Disability Studies, can’t fly for medical reasons having to do with living with spinal muscular atrophy, a genetic neuromuscular disease characterized by the degeneration of the motor neurons. When she travels, she is accompanied by an attendant and Patricia Seeley, her life partner.

The only option for her was to take the train.

Frazee was willing to make sacrifices to travel out west, such as sleeping in her electric wheelchair. She can’t be separated from her wheelchair, which is uniquely customized to her body’s needs. At times, for example, she has to tilt it slightly back to help with her breathing.

When she contacted Via Rail, she was told that she and her wheelchair had to travel separately.

Of course she was. *headdesk*

The exhibit itself sounds amazing and I wish I could see it. But it’s telling to me that in my country, where politicians regularly tell me they really care about the needs of people with disabilities, it’s impossible for Catherine Frazee to travel to Vancouver. Ultimately, she and her partner traveled through the US, where the Americans with Disabilities Act, as poor as it may be, still required that there be train cars that Frazee be able to use.

Or another hit and a miss: Promoting rights of disabled new foreign policy focus: Cannon

Promoting the rights of disabled people around the world will become a key foreign policy focus for Canada, Foreign Affairs Minister Lawrence Cannon said at the United Nations Thursday.

Cannon made the declaration after delivering Canada’s ratification of the world body’s Convention on the Rights of Persons with Disabilities.

Awwww. Isn’t that awesome?

Meanwhile our Prime Minister held a TalkCanada event that was inaccessible to blind or partially sighted people.

Yesterday morning Prime Minister Stephen Harper performed a first, by being the first Canadian Prime Minister to have his remarks streamed live through YouTube. Before and after the PM’s speech, and up until Sunday at 1:00pm ET, Canadians can login to the Talk Canada YouTUbe page to submit and vote on questions, which the PM will answer in another live stream on Tuesday.

As a completely blind Canadian and an Information and Communications Technology Accessibility Consultant (I help make information systems work for persons with disabilities), I take exception to the PM using technologies such as YouTube and Google Moderator (used for the questions and voting). These technologies were poorly accessible to me, and to other blind and partially sighted Canadians, including Derek Wilson who wrote about the barriers he faced. This is not the way that things need to be, it would have been very possible, should the PM have cared, to make the Talk Canada event easily accessible to a much wider range of Canadians, including the blind and visually impaired.

[I also have no idea if the actual videos will be subtitled, Signed, or a transcript provided.]

Oh, and Canada continues to refuse immigrants when family members have disabilities. The only ‘hit’ there is that we’re talking about it, I guess, since it’s been going on forever.

I’m frustrated. Politicians, business owners, school officials, everyone tells me that they really care about the needs of people with disabilities. They often do grand gestures: Ooh, we’ll show highlights from the Paralympic Games! We’ll agree that yes, we’re going to support the needs and rights of people with disabilities in other countries! We’re going to put in a Student Accessibility Services Office (because all people with disabilities on campus are students) and that will solve all the problems!

What we won’t do, apparently, is ensure that people with disabilities in Canada can get from Nova Scotia to Vancouver with minimal fuss and drama, like the currently non-disabled can. We won’t discuss how inaccessible politicians are to people with disabilities. We will express disdain that the laws in Ontario now require universities to be accessible to students before students spend months or even years self-advocating. We will approve bursaries for students purchasing equipment that helps them write their essays and do their school work in February – 6 months into the Academic year.

Oh Canada. Please do better.

Am J Cardiol concern-trolling: “But mobility aids will stop them EXERCISING!”

accessibility, autonomy, bad advice, blaming, i'm right here, medical practice, , , , , , , , , , , , , , , , , , , , , , , , , ,

So I stumble across this at Diabetes.co.uk: Mobility Scooters Can Increase Your Risk of Developing Daibetes and Heart Disease

“O really?”, thought I, “I wonder how well-controlled that scoldy little piece of disability panic was?” So I read on.

However, recent research suggests that mobility scooters can do more harm than good by heightening the risk of diabetes and heart disease .

“More harm than good?”, thought I, “I wonder who measured that? How did they decide which effects outweighed which in the goodness vs. badness stakes?” So I read on.

Astonishingly, a study of scooter users in the U.S.A discovered that almost one in five developed diabetes after buying one to get around.

“Huh”, though I. “One in five, eh? Hm, that doesn’t sound all that different from the baseline prevalence in the population, let alone the older/ill/disabled population.” So I read on.

The research, published in the American Journal of Cardiology, highlights how multiple benefits to patients’ health from being able to get around more easily are being erased by the effects on the cardiovascular system.

“Erased?”, thought I. “Completely wiped out? Huh. Was it the people concerned who decided this, or someone else?” So I read on.

Researchers are urging doctors to consider the risks of scooter use before making recommendations to patients invest in a scooter.

“*Doubletake*”, thought I. “Doctors should consider the risks? Doctors? Not, say, people with disabilities? Just doctors? Doctors should weigh up the risks before offering any options at all? Doctors should decide?” So I read on.

[…] There have even been incidents when scooters have killed individuals.

OMG RANDOM IRRELEVANT SCOOTERPANIC!

Moving on.

They recruited 102 patients, with an average age of 68, who had obtained medical approval for a scooter and monitored their health over six years. Even though patients stated that they felt better physically and mentally, tests demonstrated that 18.7 per cent developed diabetes during the follow-up period.

“Erm”, thought I, “Right then. Sure enough, it was an older population- nearly seventy years old on average. The prevalence of diabetes in the population older than 60 in the USA is 23.1%, and that’s not people who are already ill and have other risk factors. That’s not really a surprising number.”

“I wonder,” thought I, “I wonder how that control group did, the age- and disability-matched control group, the one who didn’t get scooters at the same time?”

OH WAIT.

Yeah, there wasn’t one. No control group.

Just a group of elderly people with cardiac failure, neurologic disease, disabling arthritis, and chronic lung disease. Just a group of people with disabilities trying to eke out a life and getting used as a Lesson To All Of Us about the dangers of sloth.

The abstract is here, in the American Journal of Cardiology. Effect of Motorized Scooters on Quality of Life and Cardiovascular Risk, Brian W Zagol and Richard A. Krasuski, Volume 105, Issue 5, Pages 672-676 (1 March 2010).

This sterling little doctor-centric chastisement does contain one really useful piece of information:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

I’ll say that again, ‘cos they buried the lead. After getting a scooter, people experienced:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

But the authors decided to slap a big ol’ “DESPITE” before this statement about how the lives of people with disabilities were improved by appropriate mobility aids, and instead go on to list the way several laboratory parameters became “worse” over time in this group of ill elderly people. In a study with NO. CONTROL. GROUP.

We have absolutely no idea how these laboratory parameters would have fared had the people concerned not obtained mobility scooters. All we know is that their quality of life improved significantly in all domains.

What the study fails to recognise – among other things – is that the alternative to getting about on mobility aids isn’t a day of jaunty strolling; it’s immobility. The alternative to going out sitting on a scooter isn’t a doubles tennis match and a brisk swim followed by a bootscooting class; it’s sitting at home.

But the quality of life of PWD, the lack of alternatives, is dismissed by these concerned medicos as a relatively trivial aside; as just one factor for doctors to consider before deciding whether to withhold their blessing – and their financial rubber-stamp – to mobility aids:

In conclusion, interventions, such as scooters, that improve self-perceived quality of life, can have detrimental long-term effects by increasing cardiovascular risk, particularly insulin resistance. Physicians should carefully weigh such risks before approving their use, as well as ensure healthy levels of activity afterward.

Dudes. Newsflash. You’re not the ones who should be carefully weighing this hypothetical “risk”. We are. And you sitting there planning to deliberately withhold mobility aid funding to the poorest people in the population because you think they might – not will, only might – see their blood glucose tweak a few points? Not ok.

You don’t get to dismiss the importance our self-perceived quality of life (“self-perceived”? Who do you think is the best person to assess our quality of life? You?) with a parenthetical “Despite”. What is important to us is important to us; you don’t get to override that with your misinformed concern-trolling. You don’t get to decide on your own, then inform us what’s important in our lives. You don’t get to exclude us from the conversation. You don’t get to tell us which risks are worth taking.

You don’t have the moral right to immobilise us based on your imposition of your own value system on our lives. You wouldn’t even have that right if this was good research. When it’s fucked-up hand-waving? Put the journal down, and start seeing real people. The people right in front of you, who are looking for independence, the ability to shop, the ability to socialise, the ability to go to the fucking doctor, the choice to have a better life. The life you’re planning to say “no” to.

Judge Orders New York to Move Mentally Ill Out of Adult Homes

accessibility, autonomy, class issues, disability activism, justice, mental health, policy

From the New York Times:

New York State must begin moving thousands of people with mental illness into their own apartments or small homes and out of large, institutional adult homes that keep them segregated from society, a federal judge ordered on Monday. The decision, by Judge Nicholas G. Garaufis of Federal District Court in Brooklyn, followed his ruling in September that the conditions at more than two dozen privately run adult homes in New York City violated the Americans With Disabilities Act by leaving approximately 4,300 mentally ill residents isolated in warehouselike conditions.

The remedial plan offered by Judge Garaufis, drawn from a proposal presented by advocates for the mentally ill that was backed by the Justice Department, calls on New York to develop at least 1,500 units of so-called supported housing a year for the next three years in New York City. That would give nearly all residents the opportunity to move out of adult homes.

The Americans with Disabilities Act gives PWDs the right to live in the least restrictive housing possible – in this case, moving from adult homes into independent supportive living units. This is a great development for those previously forced to live in the abusive conditions of the group homes.

This lawsuit was filed after a series of articles in the NY Times about the horrific and abusive conditions present in group homes for adults with mental disabilities. It is unclear whether these changes would have taken place had the newspaper not devoted the time and resources to their year-long investigation of these conditions and problems.

How to Frame the Accommodations Debate

accessibility, activism, autonomy, identity, justice, language, normality, othering, representations

The concept of accommodations for employees with disabilities is one that exists all over the world. The basic principle of these laws is that an employee with a disability is entitled to changes to accommodate specific needs created by their disability in order to work. These can be changes in policies (changing a policy prohibiting eating at employee desks to allow an employee with diabetes to manage his blood sugar) or procedures (issuing company announcements both orally at staff meetings and by written memo to accommodate an employee with auditory processing difficulties), or even maintaining a scent-free or florescent light-free workplace, providing ergonomic modifications to workspaces, and beyond.

There are a lot of negative attitudes and assumptions surrounding workplace accommodations. It is often assumed that the employee with a disability (EWD for short) and their employer are in an adversarial position – the employee is asking for something they want but that the employer does not want to give. Providing the accommodation is seen almost universally as a loss for the employer, because providing it will cost them, either by purchasing new equipment or in administrative costs and hassle for changing existing policies and procedures. In the United States, it is often made very clear to employees that accommodations are provided solely because the Americans with Disabilities Act (ADA) requires employers to cooperate, not because the employer wants to assist with accommodations or believes it will improve the overall workplace in any meaningful way.

The cost of the accommodation, whether direct or indirect, is often seen as offsetting the worth or value of the EWD and limiting the benefit the employer can derive from an individual employee. More broadly, this is seen as discouraging employers from hiring EWDs in order to prevent the need for these accommodations. This means that accommodations are often seen as “special treatment,” for EWDs, requiring a whole set of special procedures by which EWDs can request accommodations and have them evaluated and special staff to learn the ADA and evaluate accommodations and …

Another feature of accommodations for EWDs is that although they are supposed to be individualized and tailored to the specific needs and responsibilities of an individual employee, employers often think of providing specific, pre-determined accommodations based on the type of disability the EWD has. For example, employers often consider themselves to have fulfilled their accommodation duties for people with physical disabilities if the workplace is wheelchair accessible and the parking lot has a handicapped parking space. Any additional requests from accommodation are likely met with bewilderment by the employer – “we already took care of all of the accommodation issues!”

It was with all of that in my mind that I read this recent article from ABCNews, with the headline “Employees Healthier When Boss Is Flexible.” The article discussed the benefits of flexible work schedules for employees without disabilities:

“Flexible working initiatives which equip the worker with more choice or control, such as self-scheduling of work hours or gradual or phased retirement, are likely to have positive effects on health and well being,” Clare Bambra of Durham University in the U.K., told MedPage Today. “Control at work is good for health,” Bambra said. Overall, the researchers found that situations that gave the employee more control over scheduling have positive effects on health and well being, particularly with regard to blood pressure, sleep, and mental health. A third study found significant decreases in systolic blood pressure and heart rate for workers with flexible scheduling, Bambra said. Conversely, Bambra and colleagues found that mandatory overtime and fixed-term contracts had absolutely no positive effects on health outcomes.

Although the article did not analogize these flexible work schedules under employee control to the principle of accommodations and disability was not explicitly mentioned in the article, I couldn’t help but connect the two. The idea of allowing an employee to control their own work schedule based on her own needs is exactly the principle behind accommodations – tailoring the work requirements and environment to the individual and specific needs of the employee, rather than requiring everyone to comply with universal policies set by the employer. It’s also implied that these flexible policies benefit the employer by creating healthier and happier employees who are, in turn, more productive at work.

This made me wonder if it would be helpful to adopt this framing for accommodations arguments, as in “see, assisting employees to accommodate their individualized needs results in better outcomes for both employees and employers!” Framing the argument that way addresses a lot of the negative issues around accommodations discussed above: the employee and the employer are working together rather than against each other; providing this flexibility is seen as a benefit to, not a loss for, the employer; this maximizes the work, worth and value of the employee rather than offsetting it; accommodations are good business practice rather than special treatment imposed by law; the individualized nature of accommodations is emphasized and changes must be dictated by the employee’s view of their own needs.

There is a potential drawback to this framing, however – it does not explicitly mention or focus on PWDs. I see this as potentially harmful given that the need for accommodations for PWDs is created by the historic and continuing othering of and discrimination against PWDs. (See amanda and wiki on the social model of disability for more about this.) Advancing the principle of accommodations for employees without explicitly focusing on PWDs removes a lot of the disability-based stigma from the discussion, but also removes the historical context that has created a need for accommodations. Similarly, framing the issue as a smart business practice than a civil rights issue removes the discussion of “special” rights or treatment, but removes focus from the fact that PWDs deserve these rights to counteract oppression based on their disability status.

This framing technique also dilutes the concept of what an accommodation is and extends it to all employees, whether or not they have disabilities. This could be dangerous, as it would allow employers to think about accommodations in terms of overall economic benefit – this might encourage them to deny specific accommodation requests that would be considered too costly for the company, or insufficiently beneficial to the overall bottom line. While that may be unwise for employers, given studies like this, it would not be illegal and would not be a civil rights issue for employees without disabilities. For EWDs, however, denying accommodations is a civil rights issue, because accommodations are required to allow EWDs equal access to employment benefits in light of the barriers that exist because of historic and continuing oppression and discrimination against PWDs on the basis of their disabilities. Expanding the focus of accommodations to all employees de-emphasizes the rights-based aspect of accommodations for PWDs to the point of invisibility.

I’m not sure whether the benefits or costs of this framing of the accommodations argument are stronger. What do you think? Have I ommitted any advantages of using this framing? Any disadvantages? Which framing – current rights-based arguments or these non-PWD centered business arguments – do you think is best?

“Defiant Birth”: Impolite Women Who Didn’t Make History

autonomy, bodies, feminism, medical practice, reproductive justice, resistance, social attitudes, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

[WARNING for this post: ableism within and without the medical system, pregnancy/baby losses mentioned]

defiantbirthDefiant Birth: Women Who Resist Medical Eugenics, by Melinda Tankard Reist, is a book about women. It is a book about families. It is a book about resistance. It is a book about women who refuse to be told what they “should” do with their own bodies by healthcare staff, friends, and family.

It is a book of stories, of women’s voices.

All of the women in the book have chosen to continue pregnancies against medical advice. The medical advice is based on something about the pregnancy falling outside of the very narrow “norm” – the women’s disabilities, their “elderly” ages, a diagnosis (or misdiagnosis) of a fetus labelled “defective”. There is a woman with diabetes in her forties; a woman who chose to carry to term and birth two babies with anencephaly; women with babies with trisomy 21; women living with HIV; women with incorrect prenatal diagnoses of lethal conditions; a woman with lupus and a woman with MCTD and pulmonary hypertension; a woman with Scheurmann’s disease of the spine; a woman with severe asthma; a woman with cerebral palsy; a woman and man both with dwarfism; a woman exposed to rubella during her pregnancy; a woman with thalidomide-related phocomelia; and more.

I’ll start by letting some of these women tell their own stories, as this is the significance of the book as I see it:

d. a. marullo writes:

The next day I went to see my regular doctor whom I hadn’t seen yet. He was my general practitioner and I’d known him for eighteen years. I told him the news and he tightened up his face and looked at his paperwork while speaking.

“Well, you’re going to terminate, right? I mean it would be the smart thing to do!” I was so devastated by his words I almost started crying.

“I haven’t really decided anything,” I said. […]

“Well, the numbers add up, after all – your age and all. It’s probably not going to be normal!”

Teresa Streckfuss writes:

“He came bursting into our room and listened for Benedict’s heartbeat and said, “Okay, that’s all fine,” before awkwardly leaving us again. Lucky he left. If he hadn’t I might have screamed, “THAT’S ALL FINE? THAT’S ALL FINE? GET OUT OF MY ROOM! MY BABY HAS JUST DIED! IT’S NOT ALL FINE! WHAT DO YOU MEAN, THAT’S ALL FINE?” I know what he meant. Our ‘non-viable fetus’ had died, as expected. He failed to recognise that we had just lost a person, someone we loved.

Johanne Greally writes:

On returning home I went to see my doctor. I was totally unprepared for his reaction. “There will be no problem getting you an abortion,” he said. “You meet all the requirements on both physical and mental grounds.” “But,” I stammered, “I don’t want an abortion. I want a baby.” I felt shocked, belittled, and disempowered by him.

“Your back is unable to support just you, let alone a baby. You will never be able to carry a baby. You will be in a wheelchair by the time you are seven months.” It was true that my back couldn’t support me at that time, and I had been trussed up in a corset-type back brace off and on for over a year, so that I could not move around freely even without a baby.[…] All through the pregnancy my back continued to improve. I was now able to lift and bend, even chop wood by the time I was at the seven-month mark.

Heather Arnold writes:

The added pressure of a baby pressing on my lungs would cause more problems. This doctor also reinforced that the ‘standard of care’ in my condition would be to abort the baby. I told her immediately that abortion was not an option and that I would be carrying this baby as long as I possibly could. She encouraged me to go home and talk with my husband before making the decision, although my mind was already made up.

Leisa Whitaker writes:

I remember sitting in his rooms listening as he explained that there was a 25 percent chance that our child could still inherit the dominant achondroplasia gene and the dominant pseudoachondroplasia gene- a combination that they had never seen before anywhere in the world. They had no idea of what effect this would have on the baby – whether it would die soon after birth or if it would have lasting physical problems. They had absolutely nothing to go on. Having told us this, the specialist offered us an abortion. He asked us to think about whether we wanted to bring another dwarf baby into the world.

Rosaleen Moriarty-Simmonds writes:

We learnt this one day when my mum went to pick Deborah up from school, only to find her in floods of tears. The children in her class had been asked to tell a story about someone that they admired. She talked about her elder sister, who didn’t have any arms or legs, and Deborah was told off by the teacher for having “a horrible imagination!”

Jo Litwinowicz writes:

I heard mum calling dad to the phone and she asked me to repeat what I had said so I told them that I was expecting. Their reaction devastated me. “Well Jo, that news has turned this day into a tragic day. You are an irresponsible and stupid girl.” They might as well have kicked me in the stomach; I was so upset that I slammed the phone down. If my parents’ reaction was bad, what chance did we have with complete strangers?

When I went to see my doctor at his antenatal clinic his first words were, “God, you were the last person I thought I’d see here.” “Sorry to disappoint you,” I replied. He asked how we felt about the prospect of becoming parents, and we told him that deep down we had both secretly pined for a child and it was the greatest news ever. His response was to say that throughout my pregnancy, if I ever wanted an abortion, he could arrange it. […]

The next day there was a knock at the door and this woman said she was from Family Planning and could she come in for a chat. I joked, “You’re a bit too late.” She went on, saying how hard it was going to be to raise a child in my condition. I said, ‘What condition? You don’t know me and what I’m capable of. […] She calmly went on, “You do realise that when your child can walk and talk it will come to you and say, ‘I hate you, mother, because you can’t talk properly, you dribble and you’re in a wheelchair and I want a new mother.'”

Note that the stories are much longer and fuller than the bits I have picked out, which concentrate on ableist attitudes. There are many parts focusing on the authors’ happiness also!

One of the most powerful tools in our toolkit as PWD is to read the world in ways that others do not; to take tools for one purpose, and to use them for our own; to resist the appropriation of our stories for the political purposes of others. To this end I am also making a conscious choice to not review the introduction or closing words of the book here.

There are many stories in this book, and it is a book with multiple possible readings. I have deliberately avoided reading any other reviews while writing mine. I imagine that some may choose to read it as an anti-choice screed, just as some forced-birthers choose to see posts on FWD about the effects of ableism on pro-choice discourse as “on their side”. I choose not to read it that way. Only two or three times while reading did I get an sense of the voices possibly self-identifying as politically “pro-life”, and those moments were brief. One, who used the words “I chose life”, may or may not have been playing into the political nature of the phrase; either way, she is more than entitled to use the phrase in regard to her own personal choice. The other mentions in passing that she had worked at a “crisis pregnancy centre”, gave me a bit of a chill. But these are not the majorities of the stories, nor were they the most important or prominent parts of the stories in which they appeared.

The women who speak about their religion influencing their decisions, the women who touch on much-misused catchphrases like “I chose life”; these particular sentences did not resonate with me. However, not everything in this book needs to resonate with you for the stories to have power, for the experiences to speak. It was particularly noticeable that in some cases the medical staff just assumed that the choices to continue a pregnancy must be based in obedience to external religious edicts. The stories most of the women tell are quite different; their decisions were individual and deeply nuanced, not based in unquestioning submission to some sort of “authority”. Sometimes their religious beliefs were involved, and sometimes not; in no story did I read the story-teller proclaiming that other women’s choices should be legally constrained or outlawed. They are telling their own stories. I trust readers at this blog to handle the nuance, even as I might not trust those who bring their own agendas to the work.

Another issue I have with the book is the occasional mention of the experience of parenting a child with a disability as transformative for the parent. While this is not necessarily untrue, I think it needs to be written very carefully so as not to dehumanise or objectify the child, turn the child into an “inspiration” instead of a full, rounded person. I’m not sure whether that line was quite crossed – I’d have to re-read in detail, and the book has to go back to the library today! – but it skated close here and there.

If you’re looking for a statistical representation of how often prenatal diagnosis is wrong or misrepresented or used to pressure women, this is not the book for you. This books isn’t statistics; it’s lived experience. The stories have been chosen because they represent those times that women are pushed around or lied to or subject to misdiagnoses and poor medical care. The issue in the book is not whether this is a majority or minority experience, but that it happens at all, and that it can be handled very, very badly. Given the number of readers and writers on this site who’ve been stampeded in the healthcare system, I think many of us do have a sense of what it’s like to be on the receiving end of that treatment. In these stories, the stakes are high: the result of the stampeding, unresisted, would have been, in each case, a wanted pregnancy lost.

But I am overemphasising my nitpicking and reservations, here. In short, I recommend this book highly. The stories of disabled women, in particular, I found absolutely riveting. Their stories are vivid, immediate, at times horrifying, but more often joyful. The joy can be transcendent, yet entirely ordinary: the joy of a wanted baby, the magnificence of a disobedient woman.

I would love to see a followup book, in a similar format, with a broader scope. I’d like to see a book including stories from parents in non-Western countries; from trans or nonbinary parents; from very young parents; from undocumented immigrants and refugees and Indigenous people. A book including more analysis of the intersections of class and nationality and gender and race and queerness with disability could only be stronger. Whether we’re likely to hear that book from Reist is, well, a matter for debate; but she doesn’t, nor should she, have a monopoly on this type of story. As it stands, I am left thinking that it is only the privilege that the women in this book have – mostly white, mostly relatively wealthy – that allowed them to resist as they did, to survive as they did. The stories in this book are particular types of stories, and do not represent the realities of all pregnancies labelled “abnormal” for one reason or another.

However, even in its current form, I think this book should be considered a basic primer – for healthcare professionals, for pregnant people, for anyone else interested in disability and rebellion. It is not a primer about chromosome diagrams or placental configurations or how to eat or what to expect; but a primer about lived experience. The book covers what medical textbooks and pregnancy self-help books do not: the intimate, touching stories of women who rebel against crushing ableism.

Above all, Defiant Birth, to me, is defiantly pro-choice. It’s a book about reproductive justice. This book deserves its place in the stable of pro-choice works dedicated to the equally valid and necessary choice to not have a baby.

I’m not here for your inspiration

anna rants, autonomy, bodies, media and pop culture, othering, social attitudes, , , , , , , , , ,

I think I upset one of the newer employees at my favourite tea shop today. Most of the staff are used to my cynical reactions to newspaper discussions of how inspiiiiiiiiiiring people with disabilities are at this point.

But let me begin at the beginning.

Actually, no, let me begin with something important, since recent events have told me one cannot be too careful.

There is a certain way news media prefers to talk about people with disabilities. They like to tell our stories in a way that’s “inspiring”, that’s about making non-disabled people feel better about stuff. “Oh, look at how brave that person is, being all alive and stuff despite having a disability! I would rather be dead! That person/their parents/their loved ones are so brave and inspiring! I will now put issues of accessibility and disability out of my mind, because I have been inspired!”

These stories aren’t really about people with disabilities. They’re about making currently non-disabled people feel they know something, that they’ve been touched, that their lives could be suffering and badness, but look how lucky we all are. Look at the plucky crippled person, and be inspired. [This is, of course, why Helen Keller is reduced to “hand in water” stories.]

There are, of course, reasons why people with disabilities and their families participate in these stories, and I certainly don’t blame them. I know if someone offered to interview… wait, I’ve been interviewed a few times now about disability, and I did leap at the chance. I don’t think that people who are interviewed for these stories are doing anything wrong. They’re talking about their lives, and describing their experiences. No, it’s the way that these things are spun, the words being used by the reporters to fill in the gaps, that is the problem.

The tendency is so very very wide spread that Haddayr (with the help of Codeman) made a bingo card for us all:

Description follows

Description written by Haddayr:
Are you writing an article that profiles or even tangentially involves a disabled person? Make it easy on yourself: string together these words and phrases with a few voyeuristic references to the person’s body parts, and call it a day!

She didn’t let her disability stop her!
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Thought she would never get to [some activity most of us never get to do]
Courageous battle
He relies on [friends/a guide dog. No fair using electricity!]
Confined to a wheelchair
Then tragedy struck/her dreams were shattered/the unimaginable happened
. . . wants to help others [the ‘bless him’ is inferred]
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Can only communicate through [communication device]
Cheerful/ Never let it get her down/ Positive attitude
Free Space:
BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
Through the miraculous assistance of [something completely non-miraculous]
She refused to give up/give in/succumb
Defying overwhelming odds
She ‘suffers from’ [impairment]
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
[insert some pseudoscience]
Determination
Most of us could never imagine [horrific impairment] happening to us, but…
Every day she has to [take some medication/do some physical therapy]
Special
He has overcome his disability!
. . . proving you can achieve anything if you really try!

So, let’s go back to my story.

I haven’t been following anything to do with the Olympics for reasons I won’t go into here, but I knew exactly what was going on when I glanced at Saturday’s Globe & Mail and saw this splashed across the front:

A Different Victory: When Alex Bilodeau’s brother cheered his gold, the triumph went more than one way. The skier and the painter find inspiration in each other – and neither one accepts limits. Ian Brown travels to the intimate heart of a family.

“Oh gosh!” I said to Don, in my overly chirpy sarcastic voice. “It’s going to be an inspiring crip story, I just know it! Quick, let us purchase this fine newspaper so we can be inspired!”

Poor dude behind the counter proceeded to tell me how inspiiiiiiiirng he found “the brother of the guy who won gold”, to which my response was… less so. “Inspiring crip stories irritate the fuck out of me.”

You know what would inspire me, gentle readers? Curb cuts being cleared of snow so Don & I could get across the street without having to go three blocks out of way first. But I guess when you’re a bitter, cynical, angry person who just hates fun, that’s what you get.

Sadly for all of us, Ian Brown’s articles don’t seem to appear on the Globe & Mail’s website (except perhaps behind the paywall), so I can’t let you read the inspiriiiiiiing story of Frédéric Bilodeau, but I can show you a BINGO card that Don & I filled out while we read it.

Description follows

Description: As above, but with the following squares circled:
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Then tragedy struck/her dreams were shattered/the unimaginable happened
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Cheerful/ Never let it get her down/ Positive attitude
Free Space: BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
She refused to give up/give in/succumb
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
Determination
Special
He has overcome his disability!

Of course, what Frédéric Bilodeau’s story has actually managed to inspire is awesome comments at the Globe & Mail like this one:

Proud for so many reasons

Alexandre Bilodeau has provided something more than his magnificent gold performance (Gold Comes Home – Feb. 15). He has provided an example of the role that individuals with a disability play inspiring us as they overcome their challenges.

Thank you, Alex and Frédéric.

Brian Smith, Toronto

Mr Smith, with all due respect, we are not here to be your thrice-damned inspirations thank you very much. Be inspired! Lobby the Canadian government to provide funding for all universities to be fully accessible to people with disabilities! That would help lots of people with disabilities overcome their challenges!

The point of this post isn’t “here I am, talking about an article you can’t read, and being as sarcastic as possible, aren’t I witty?”. It’s actually to talk seriously about the way disabled people are written about. We’re allowed to be inspiring stories of overcoming adversity – and often those stories focus on the difficulties our loved ones have, and how hard it can be to have a disabled person in your life – or we can be a passive victim of crime. That’s it.

If new media actually presented people with disabilities as we actually are… well, that, gentle readers, would be actual news.

ETA: facesofcathy found that Ian Brown’s article’s up over at CTV. (Why? I don’t know.) Check it out: The Bilodeaus: Elusive truths from an unforgettable family. I haven’t done a side-by-side comparison of the text (I think the headings are different?) but it look pretty close.

Check out the comments if you like to headdesk over how inspiiiiiiiired people find these types of stories.

Dear Imprudence: A “Tired Wife” Strikes Back?

autonomy, bad advice, Dear Imprudence, gender, life changes, normality, shaming, social attitudes, , ,

The hits just keep on comin’, thanks to Slate. Earlier this month in Dear Prudence, we got to read this winner:

Dear Prudence:
My husband had a stroke 18 months ago. At first he was unable to speak and his right side was paralyzed. He regained his speech and, with a lot of work, got full use of his arm and leg. But the stroke made it impossible for him to practice his profession, and he continues to have short-term memory problems. He’s home on extended leave. My problem is that he is obsessed with what he has lost and how bad things are. When I come home from work—I have to keep us fed and housed—all I hear about is what a terrible state he’s in. I’ve tried various things: We’ve gone to a counselor, his doctor has given him anti-depressants, I’ve encouraged him to go back to his hobbies. I try to plan things that will be enjoyable for him. Nothing is working. He won’t take up his hobbies or socialize, and he dwells so completely on the negative that even his closest friends are getting weary. It seems to me that he should be grateful he survived and regained so much. I am so exhausted by his negativity that sometimes I just wish I could leave him, but I would never do that. Is this the way it’s going to be forever? –Tired Wife

First, something tangential: Is this not THE perfect mishmash of weird disability-related hangups from an abled person plus some lovely Feminine Mystique-era gender(ed) expectations? It’s like it was made for a takedown on this site.

Moving on: On one hand, I can certainly see why this woman is frustrated. Adjusting to newly-acquired disability can be an extremely difficult process — not only for the person with the disability, but for their relatives and loved ones as well. However, there are a ton of stereotypes made explicit in this woman’s letter, not least of which is the “he’s just so NEGATIVE!” and the related expectation that her actions and her efforts will somehow make him become a happy, compliant Good Cripple. I have to wonder, has she stopped to consider that adjustment to disability is a long process? Or that having to go on leave from one’s job due to a newly acquired disability might, in fact, be extremely taxing on one’s self-image? Apparently not — all that matters is that he show proper gratitude (and non-“negativity”!) for all of her efforts, and not trouble her with his “dwell[ing] completely on the negative.” I am sure that many of us would find it hard to be “grateful,” too, if we had someone treating us this way due to our disability (or disabilities). Once again, a disabled person’s feelings and experiences are steamrolled over in favor of those of a person who is not disabled, and this is apparently acceptable because they are in a relationship.

The gender question, too, is worth a look; while it’s pretty common knowledge that women, on average, do much more “caretaking” work inside the home than men (at least in the U.S.), there are a few things that stick out, mostly based on what the letter writer does not mention. Was she primarily responsible for managing her husband’s schedule and social life before his stroke? If “nothing is working,” has she spoken with him about it? Please understand that I am not trying to blame her for larger sexist patterns of who tends to do the home-related care-taking and who does not; it does, however, seem odd that she has not (as far as we know) attempted to speak with her husband about this — his “negativity” nonwithstanding.

The sense that I get from this letter, overall, is that this woman has spent a huge amount of time and energy trying to fulfill the role of the “perfect” wife, and now that her husband cannot fulfill the complimentary “perfect husband”/breadwinner role, her resentment is close to bubbling over. Add to this much of mainstream white, abled feminism’s emphasis on “independence” — which seems to exist in a magical land where no one is (or should be) dependent on anyone else — it is not terribly surprising that she feels that her only option would be to leave her “negative,” disabled partner. That these seemingly opposing tendencies could show up in one letter is not surprising, either.

So, what do you think, commenters?

Accessibility & Sustainable Transportation

accessibility, autonomy, politics, social attitudes

Last week I attended a meeting at my university campus regarding sustainable transportation options for the next five to ten years. We’re at an interesting point in time here, as both the transit routes and the university are putting in long-term planning, so we may have a chance to push for real, useful, interesting change that can have long-term impact on both the university community and the greater community.

I would say “Ask me what wasn’t covered at all!” but I’m sure you can all guess – accessibility was never mentioned, even though the initial study into the needs of students, faculty and staff on campus had raised issues of accessibility.

But! Credit where credit is due. I brought this up at the meeting, and then again (as in, ten minutes later) with head of my particular branch of student government, and this afternoon attended a meeting including myself, the president of my particular branch of the student union, and student accessibility services to talk about concerns regarding accessible transport and sustainable transport.

Basically, the topics of conversation were around the fact that we’re a growing campus, we have greater needs regarding getting people to and from campus every day, but we want those needs to be Green in focus. The initial meeting I attended last week focused on things like faculty bus passes, incentives to car pool, and what encourages people to walk or bike to campus.

What we talked about today were more focused ideas that were inclusive of people with physical and sensory disabilities. I wanted to talk about this here, because I have no illusions: Even with student accessibility services there, we were still only talking from a limited perspective. I focus a lot on mobility needs, and more specifically on the needs of people using wheelchairs, for reasons I think are obvious, and the gentleman from student accessibility services then focused a lot on issues around students with low-vision, or who are blind.

I figure I’ll use our meeting for a greater discussion here. I want to both bring attention to others about sustainable transportation conversations and how to include concerns about accessibility and people with disabilities in them, but also I want to have more feedback and input. There are new students every year, new faculty who may have different issues regarding transportation and accessibility. The more we talk, the more we collectively can ask for things that will aid as many of us as possible.

Things that were brought up:

– Sidewalks. We talked about how horrible they are around the university, although this is pretty universal in our city. SAS brought up the needs of students who are low-vision or blind about sidewalks, including the need for high-contrast paint jobs on the curbs and around obstructions, and to have some sort of guide on the actual sidewalk for canes.

– Buses. More seating for bus stops around campus. Pushing to get more accessible routes to come here. Stop announcements (municipally they’re on the agenda for next year). Giving out cards to people so they can just show their card (usually something bright) so the bus driver will just lower the low-floor buses without you needing to ask. A recording to indicate when the next bus is coming.

I happen to know from looking at the current five-year plan regarding the bus service here that it will cost $1500 per stop to get a stop up to what they want for accessibility needs, and that a route must be entirely made up of those stops before it is allowed to carry people who use wheelchairs. This is a long-term project, sadly.

– Parking. I confirmed that here there is no additional charge for parking passes if you have a disability, you get guaranteed parking, and if there is a greater need for parking in front of a building, Facilities Management will actually designate more spots accessible. I don’t know how that plays out in reality, though. (I note there’s only one accessible parking space in front of the Library, for example.)

What are your thoughts regarding this?

Do you REALLY trust women?

autonomy, bodies, feminism, gender, intersectionality, justice, media and pop culture, mental health, normality, policy, politics, reproductive justice, sexuality, shaming, social attitudes, Uncategorized, , , , , , , , , , , , , , , , , , , , , , , , , ,

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.

Lines in the Sand: Daly, Showalter and Tactics of Exclusion

activism, autonomy, blaming, bodies, feminism, gender, identity, intersectionality, justice, language, normality, politics, shaming, social attitudes, , , , , , , , , , ,

The second-wave radical feminist theologian and professor Mary Daly died earlier this month, and there has been a veritable outpouring of eulogies from various feminist blogs.

Few of these eulogies have acknowledged Daly’s transphobia and racism.

I do not deny that Daly was an important figure in second-wave feminism, but to mourn her passing without a nod to her work’s more problematic aspects, or explorations of these aspects, are, to put it mildly, not good. In particular, the intense, hateful transphobia found in some of her writing, and her issues with unexamined white privilege and racism — which both QueenEmily at Questioning Transphobia and Sungold at Kittywampus cover very well in recent posts — strikes many as both deeply disturbing and an old pattern that has, and continues to, rear its grotesque head in certain segments of contemporary feminism. I include myself among those who are deeply troubled by Daly’s transphobic sentiments and her questionable record when it came to examining the entrenched racism and issues surrounding white privilege in the second-wave feminist movement.

I should probably mention at this point that I do not mean to appropriate or co-opt the struggles of trans* folks in any way, although my cis privilege will most likely be unintentionally reflected at points in this piece. Though the struggles of trans* people, trans feminists and PWDs and disabled feminists are not the exact same, some exclusionary tactics of certain cisgendered feminists and those of abled feminists sometimes take similar forms, especially within the mainstream feminist movement. The oppression of trans* folks and PWDs in cis, abled culture intersect in a number of ways; this post, however, barely scratches that surface. I believe that the many issues present in Daly’s work–as well as the reaction to her death around the blogosphere–can serve as just one entry point to discussions of the similarities in oppression(s) that trans* people and PWDs face. There are also clear differences, among them the fact Daly used language that can only be called genocidal, while many other feminists of her generation did not advocate such an extreme path when it came to keeping certain individuals out of feminism. I will be focusing on feminism’s exclusion of trans* and PWDs as reflected in the work of two very influential second-wave feminists here, but there is, of course, much more to these stories.

Daly’s penchant for exclusion and outright hatred (particularly of trans* individuals) couched in oddly phrased academic rhetoric unfortunately brings to mind another famous second-waver’s similar issues with people (particularly women) with disabilities. Princeton scholar Elaine Showalter — best known for bringing feminist literary theory to the fore in the academy at a time when such a discipline was, for the most part, inconceivable — dismissed disabling conditions like Chronic Fatigue Syndrome, Gulf War Syndrome and mental health issues such as Dissociative Identity Disorder (referred to in the text as Multiple Personality Disorder) in her 1997 book Hystories.

In Hystories, Showalter attempted to debunk “modern media epidemics” such as the aforementioned disabilities as well as more traditionally disproven phenomena such as alien abduction and satanic ritual abuse. In the book’s chapter on Chronic Fatigue, Showalter rather disingenuously declared that she did not want to “disparage the suffering” of people with such conditions only a few pages before she called CFS an extension of Western “fin de siecle [end of the century] anxiety.” She followed this stunning assertion with the claim that the Western news media was primarily responsible for making CFS into an escalating “psychogenic epidemic” (117, 131).

Like Daly’s severe opinion of trans* people as dupes of the medical industry (which Kittywampus cites in her post), Showalter also seemed to be taken with the idea that people with CFS are somehow being duped into thinking that they are ill because of the media focus on their condition. She wrote that many CFS patients and their defenders are “hostile to psychiatric or social explanations” of the condition, and that many of them react in a way that is not friendly to the labeling of CFS as “psychiatric” (128). However, the reactions of these same patients make sense if considered from a non-abled perspective. Showalter also seemed completely mystified by these “hostile” reactions. If CFS is just a manifestation of “fin seicle anxiety,” as she contended (adding that “emotions have tremendous power over the body”) she seemed to push the conclusion — without any scientific or medical proof — that many people with CFS have somehow been brainwashed into believing they have it; thus, the media-driven “hysterical epidemic” has worked.

Nowhere are feminists with Chronic Fatigue Syndrome or related conditions consulted; the not-so-feminist implication here is that feminists with Chronic Fatigue Syndrome either do not exist or are just victims of a “hysterical” media-led epidemic and therefore cannot be “real” feminists. This is similar to how trans* feminists were erased, excluded and castigated by Daly as somehow not “real” women or feminists, and as benefiting from patriarchy in a way that “real” women and feminists could not. To put it crudely: This is exclusionary bullcrap, and it does not do trans* people, people with disabilities, feminists who fit either (or both) of these categories, or the feminist movement as a whole any favors whatsoever.

Exclusion is not radical. It has never been radical. It is, in fact, extraordinarily status-quo. No one should be able to arbitrarily pick and choose who “belongs” in the feminist movement and who does not, especially if those who are being excluded because of their gender identity, sexual identity or disability actively identify as feminist. Feminism should be for a wide variety of people; exclusion, however, is something that is not — and has never been — very  feminist.

Author’s note: I will be moderating this thread with an iron fist; please have the courtesy to not try to tell me how Daly really was an ally to trans* folks, or how Showalter didn’t mean what she said about CFS *that* way, or that either author’s influence on the feminist movement somehow excuses their hatred and bigotry. Thank you.

[Cross-posted to Ham.Blog]