Tag Archives: disability

The Importance of Being Bellatrix Lestrange

Bellatrix Lestrange, as portrayed by Helena Bonham Carter, a pale woman with a mop of dark, thick curly hair lightly tinged with strands of grey, smirking devilishly in a black dress with white embroidery, pointing her wand at her own face.It is odd the way that The Guy and I have these conversations…or maybe it is a sign that we watch our Harry Potter movies too much, but one night while viewing HPatHBP for appoximately the nonillionth time I turned to him during the Unbreakable Vow scene at Spinner’s End, and began the following thought train (all quotes should be presumed to be “air quotes”):

Me: You know, all of Snape and Dumbledore’s plans would have been shot if anyone at all would have listened to Bellatrix.

The Guy: No kidding! She never trusted Snape. Look at how she taunts him!

Me: It’s because everyone dismisses her as just being “insane”, you know.

The Guy: Because she was in Azkaban, you know, and it has “driven her mad”, so she obviously doesn’t know what she is talking about.

Me: Obviously.

See, I am not in anyway advocating for Team Voldemort or something. There is a great discussion on racism that can be had about the antics of the Death Eaters (and the dynamics of having that point made from a primarily White PoV) in another post, but more interestingly to me right now in this particular post is that Bellatrix was completely right in her mistrust of Severus Snape and his position beside Lord Voldemort. Her feelings go much deeper than mere jealousy (but why shouldn’t she be jealous, since she alone stood proudly, unafraid of the consequences of supporting Voldemort when others did not?) to a practical mistrust of someone who seemed to benefit all to much from a convenient and literal get out of jail free card.

We know that Bellatrix was described as having a personality that bordered on displaying psychopathic tendencies* (from a lay perspective), in that she showed little to no conscience. We know that her cold and callousness was often played up if for no other reason than to reinforce that Bellatrix was someone who was a little unbalanced. Her pride in being a “pure blood” was over the top to a “normal” person, and we are to presume that no rational person would behave the way that she would. So, no rational person would honestly believe that anyone would dare betray the Dark Lord. She goads people with baby talk and laughs at inappropriate times which all adds to the image of the mentally unstable woman who just can’t be taken seriously, but is tolerated for whatever reasons (in Bellatrix’ case, it is more than likely her undeniable talent and power. Even Death Eaters can’t look that gift horse in the mouth, mental illness or no!).

I am not a doctor, nor anyone qualified to make medical opinions about the fictional personality of Bellatrix Lestrange, but I do know that often in real life people who have mental illness, to any degree, are in fact taken less seriously than those who do not. They are dismissed in everyday goings on, dismissed when it comes to their own medical care, told they shouldn’t have children, told they are not suitable parents if they do already, and when they leave the room you had best believe that people snicker that “poor crazy Bellatrix is raving again”… The importance of Bellatrix Lestrange is that she represents real people…real women who exist — whether intentional on the part of J.K. Rowling or no — who have valid concerns in the world, and who can not get their voices heard because their mental illness (or any disability) creates a barrier between what they say and what others are willing to hear.

So J.K. was free to write this character, whose madness and temper were often mirrored in her own cousin, Sirius Black (interesting, no?), who could go on and on at will about Severus and how he was not to be trusted, how he was really going to betray the Dark Lord. Severus was able to rest easy through her rantings, knowing full well that no one was going to believe her, that his triple agent status was going to remain unscathed, because, after all, who would ever believe a crazy person, right? Voldemort might have been better served had someone actually listened to her.

But no one did.

Interesting, that.

I mean, I guess it is a good thing, both for Harry himself, and for the sales of books five through seven or so and the corresponding movies, since the story might have stopped cold had any of that happened. Something to consider, I suppose.

Oh, how I do love discussing Harry Potter.

*These descriptions I take mostly from the Harry Potter wiki.

Photo: The Harry Potter wiki

Cross Posted at random babble…

Anger as a Constructive Force

Note: This is kind of an old post, but I think it’s still useful.

I’m sure that many of you have heard variations on the following:

“You’re just too angry. Your anger alienates people/potential allies and might make them afraid to associate with you! They won’t want to be on your side because of your anger.”

This statement, or a variation thereof, is often wielded at feminists, people of color (particularly women of color), radical progressives, non-mainstream members of the LGBTIQA community, disabled and chronically ill folks, atheists, fat acceptance activists, and others in order to get them to capitulate to some weird, unseen social standard that requires that they not offend anyone even as they fight to be heard and taken seriously, as well as for social and political justice.

There is a difference between being angry for its own sake, and turning one’s anger into action. For whatever reason, mainstream Western culture has decided that people who have historically been put down, devalued and mistreated by those in the majority should fight for their rights, but they should “be nice” while they do so. The messages that historically devalued groups have to get across, even if said messages are quite radical, should apparently be palatable even to the people who have the most social currency in mainstream society. What’s radical about that?

Anger makes people fundamentally uncomfortable, and I think that this discomfort often discourages constructive work. When those who need to express their anger, somehow, are not allowed to do so, the anger can become toxic. Instead of a catalyst for change, it becomes a symptom of a missed opportunity.

My own anger is something that I’ve just begun to embrace after years of stuffing it down and having it reappear at other times, often to my own detriment. Certainly, I may be too angry. I may indeed alienate people with some of my words. However, do I really want those who cannot “handle” what I have to say as allies, if I have to add, for example, rainbows and unicorns and puppies to my outlook on the world in order to make my outlook more palatable? No.

Anger, if used in a constructive manner, can be a great creative force. Most of the cartoons that I draw and have drawn start or started as brief doodles about things that make me or have made me angry. When I can create something that has been inspired by my own strong feelings, I feel much better and more able to cope with things such as my illness, and the physical pain and fatigue that come with it. When I take the opposite tack–that is, when I hold my anger in and don’t do anything with it–I feel worse.

[Originally posted at HAM.BLOG on August 7, 2008.]

Glee: Poster Children for DisabilityFail

You saw last week’s Glee promotional poster, posted here by s. e. smith. In that poster, Sue the cheerleading coach sprays spray paint across the Glee club – hitting most of the singers in the chest or abdomen, but spraying Artie, who uses a wheelchair, across the eyes.

Here’s the latest:

glee poster with singers jumping for joy against a red background. Artie, instead of jumping, is falling out of his wheelchair.

Look at those singers! They’re so happy! They’re jumping for joy! They’re smiling! Life is good! Well, except for Puck, who chooses to stand with his arms crossed, looking cool. That’s his version of happy. And, oh, except for Artie. Who can’t jump, because, LOL, he’s totally confined to a wheelchair, y’see. So he’s falling out of his chair. Looking terrified. What fun!

Worst of all? Fox loved this branding so much – they made three versions.

Continue reading Glee: Poster Children for DisabilityFail

For Cereal, Time?

I was perusing the internets doing some research for work when I came across this lovely list from Time.

Seems some orthopedic surgeon is now the ultimate authority on all things medical…in every iteration thereof. Doesn’t matter what specialty or what your history. Dr. Scott Haig is now the expert, so stop what you are doing, right now. Do not pass Go, do not collect $200, and certainly do not trust whatever you have worked out in your personal health care, and just do what Our Dear Dr. Scott says.

Of particular interest to me is that the Great Dr. Scott says that narcotic pain medication “never” works for chronic pain. Ever. You should never use it unless your pain is acute, and if you are using it for such, you should stop, now. Forget your medical history, or whatever other methods you have tried or that have failed you:

The drugs are relatively easy to get and tempting to take, but you should never use them for chronic pain. Narcotics addiction is insidious. The drugs change who you are, and over time they make any and every pain worse.

This tidbit makes me want to say something to Our Dr. Scott…something that starts with an “F” and rhymes with “uck You”. Because Dr. Scott does not know my pain, or what I have been through trying to manage it, or how for the first time since all of this started I am living a semblance of a life that doesn’t leave me feeling worthless.*

I have some other very interesting and loud thoughts on Our Dr. Scott’s advice on “Exercising an Injury”, “Overplayed Allergies”, and “Google Abuse”, but I will let you all have at it now. I am going to go chronically abuse some narcotics.

/sarcasm.

*As in, each person has to decide what they can live with, want to live with, are willing to live with in terms of their medical care, and base their decisions on that personal choice insofar as it is in their control to be a part of that choice. It is part of my privilege to be able to do so and to say “I want to be able to do these things, and these side effects are worth it”. It is not that way for everyone, and I want to acknowledge that.

Oh Canada: This week in Canada & Disability

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!”

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.

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

[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.

Feminism Objectifies Women

You’ve heard the term “choice feminism” right? Usually used derisively by a person who is arguing: Just because a woman makes a choice does not make it a feminist choice, we have to be able to examine issues on a systemic rather than individual level, some choices that individual feels are good for them are actually going to be bad for the group as a whole and even bad for that individual when systemic issues are taken into consideration.

Here’s what annoys me about this argument. It always comes from the perspective of a white, cisgendered, currently nondisabled, middle-to-upper-class, heteronormative, and otherwise socially privileged person.

That doesn’t mean that it’s that kind of person saying it: it means that the very idea comes from a very specific perspective, in response to a very specific situation.

And not all of us are in that same situation.

The assumption, when this person says “we have to be able to make some sort of systemic analysis and that will mean some choices have to be wrong” they are almost always assuming some specific things.

* Women have been historically locked in their homes tending their houses and families, and larger society pushes against women’s ability to participate in the workforce, and women should participate in the workforce at the highest level possible.

* Women are oversexualized, and that sexualization takes specific forms, such as high heels, lipstick, makeup, dresses.

* Women are stereotyped as demure and submissive, soft and giving, caring and intuitive.

* Women are forced into roles as family carers, encouraged to have as many children as possible and to be the primary carer to those children, stereotyped as having special natural ability to raise children.

That’s just a few.

Here’s the thing. Everything I just said above about “women”? Isn’t true for women. Rather, it is true for white women. Or cisgendered women. Or nondisabled women. It is not true for women as a class.

Yet we continually operate on the assumption that it is!

But ask some other women, sometime, what their experience has been. Many poor and lower-class women, for example, would gladly tell you that they have never had a whiff of an option to stay home with their children — they’ve been out there washing the rich women’s drawers, or sewing them in the first place, so that they can afford dinner for their family a few days out of the week. Ask a black woman about being a nanny and wet nurse. Ask both of those women, and a few mentally or physically disabled women, about when they had their children taken away from them or weren’t allowed to spend any time with them at all (apart from the time they spent cleaning up the messes of the children of those rich/white/nondisabled women they worked for).

Ask a little black or brown girl in some poor neighborhoods about being expected to be virginal (a concept that depends on whiteness from the very beginning) until her wedding day. She’ll probably laugh at you. She’s been continually harassed, abused and assaulted since age six. She’s portrayed in larger culture as an unsexual unwoman and yet every man who crosses her path sees her as a potent sexual opportunity.

Ask the little girl with developmental disabilities about sex sometime, too. No one ever sees fit to give her any information on the subject. They fight to have her sterilized, or even be forced with serious drugs and surgical interventions to stay in a prepubescent state for the rest of her life, so that no one will ever have to deal with the messy proposition of a menstruating or pregnant r*t*rd girl. And if she does get pregnant, that baby had better be aborted immediately, because she could never, ever be anything but an utter failure of a parent. Sterilization is proposed precisely so that she will never get pregnant even if she is sexually assaulted by carers — precisely because everyone knows that she will be.

Ask the visibly disabled woman about being expected to dress up in skirts and high-heeled shoes. Everybody around her will wince at the thought of her in form-fitting, skin-showing clothing. Because, you know, “women” are oversexualized in that way. Ask her about those super-special parenting powers she supposedly has. Everybody around her will bristle at the thought of her having primary responsibility over a child. Because, you know, “women” are stereotyped as having those super-special powers.

All of these girls and women live very different lives as girls and women. The fact that they are marginalized as girls and women is one thing they share in common. But the ways in which they are marginalized are different!

A white woman is marginalized in a different way than a Latina woman is. And a Latina woman is marginalized in a different way than an indigenous woman! A nondisabled woman is marginalized in a different way than a paraplegic woman is… and a paraplegic woman is marginalized in a different way than a bipolar woman is. An upper-middle-class woman in urban New York is marginalized in a different way than a poor woman in urban New York — and a poor woman in New York is marginalized in a different way than a poor woman in Indiana.

There are different mechanisms of marginalization for different types of people — and the greater your difference from the presumed default person, the more different your type of marginalization looks than the privileged-other-than-gender woman.

And that means that what affects you, how it affects you, what issues are important to you, what is good for you and what is bad for you, is different for different sorts of people.

So we cannot, cannot assume, if we agree that “choice feminism” is misguided (and indeed, I believe that straw-ideology would be misguided — well, surely many people think that way, but that is not usually the argument that is being put forth in these discussions), that high heels, lipstick, being submissive, foregoing paid work to raise children, etc. etc. are clearly problematic under a systemic feminist analysis. Because they might be clearly problematic for one set of women — but they are not clearly problematic for the set of all women.

Actually, sensible shoes and baggy desexualized clothing might be clearly problematic for a different set of women who have been historically deprived of their right to any sexuality. Actually, full-time participation in the paid workforce might be clearly problematic for a different set of women who have already been working outside the home for centuries and have historically been denied the right to raise their own children. Actually, being aggressive and dominating or even merely appearing assertive and self-confident might be clearly problematic for a different set of women who are culturally typed as bossy, loud, demanding and unyielding and rarely read as anything but.

Given all of this, I am distrustful of anyone who argues against “choice feminism” or the idea that “any choice is a good choice for that person” because that is not the point. When people protest as you judge their choices against your standards, they are not claiming that no choice could ever be problematic. They are protesting because you are applying the standard of your particular experience against their very different experience. They are protesting because you are assuming that your experience is universal. They are protesting because you are invalidating their own experience, their own feelings and thoughts and desires, in the process. They are protesting because you are objectifying them. And it feels pretty shitty to be objectified.

(Cross-posted at three rivers fog.)

A Conversation With a Pharmacist

[Scene opens with a loooooooong wait in the pharmacy before my number finally “pings” on the digital number-pinging thingy, as I struggle out of my chair, and hobble up to the pharmacist’s window, and hook my cane on the window ledge for emphasis as I hand over my ID and number slip, wincing in the fluorescent lighting on the other side.]

Army Medic Pharmacist: One moment.

Me: No problem, Specialist. (I am well aware that two of my three expected prescriptions require me to wait as they are counted, twice, some other fun stuff, though I no longer have to run around to get them, and have to be signed for, so I amuse myself by reading the literature he hasn’t bothered to hand me yet.)

[AMP returns with the Civilian Pharmacist]

Civilian Pharmacist: You have taken pregabalin with topamax before?

Me: Yes.

CP: What about this antacid?

Me: No. But I assume it is the same as my previous one.

CP: Yes.

[I sign for one med. CP hands me two bottles.]

Me: There should be a third script.

CP: No, only the two.

Me: There should have been a vicodin script as well.

[CP raises her eyebrows at me]

CP: You are on pregabalin.

Me: Yes.

CP: That is a time released pain medication.

Me: Yes ma’am.

CP: You don’t need vicodin with a time released pain medication.

Me: With all due respect, ma’am, I usually have both.

CP: Well, there isn’t a script for it, and I don’t think you need it.

Me: Well, ma’am, there should have been one, and I am going to ask you to call my provider about it.

[Staring contest ensues between Me and CP. I win. CP picks up phone and asks AMP for Dr. Awesome’s number. I can hear Dr. Awesome on the other end apologizing for forgetting the script, that the computer wasn’t working right when I was in her office, which it wasn’t, and that she forgot to put it in before leaving the office, and would put it in the next day she was in.]

CP: Dr. [Awesome] apologizes for your inconvenience. You can pick up the script on Monday.

Fin.

I’m not here for your inspiration

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.