Tag Archives: cerebral palsy

Recommended Reading for November 16, 2010

Peggy Orenstein for the New York Times Magazine: The code-words of breast cancer awareness

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow.

Ally at Every Crooked Step Forward: Where I Write About (Not) Coming Out

I could have lied. But I couldn’t lie. I didn’t know asexual was anything, then, so I just said no, and then was forced to sit through all the speculation. They didn’t know, and I didn’t know enough to argue with them. People assumed I was undesirable, because of the CP, and I didn’t argue with them, though I wanted to because the assumption hurt, but the hurt was hard to explain, under the circumstances. People assumed I was too brain damaged to understand sex, and I couldn’t explain otherwise, because simply having no desire was enough to tell sexuals I didn’t understand.

Lisa at Sociological Images: Illustrating a “Normal” Life Course

By organizing birth control needs according to age, the slide show teaches viewers a socially-approved timeline for our sexual, marital, and reproductive lives.   Teen sex is invisible, having children in your 30s is ideal, and the end of a relationship is an option but, as Corina points out, not having children is not.

Wheelchair Dancer at cripwheels: Broken

Regardless of the state of Tommy’s mind and body, it is we who are broken.  It is we who drink in glorifications of war and heroism in the movies and kill the political systemic message of such poetry by treating it as individual expression.  It is we who refuse to provide support and systems of support to help our veterans; it is we who shame and silence them into a stiff upper lip.  We are the ones who both stare and look away.  Homelessness doesn’t respond to swelling music and huge parades.  PTSD isn’t best treated by ignoring it.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: NAMI (National Alliance on Mental Illness)

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations.  Why is that?

David Gorski at Science-Based Medicine: Homeopathy for fibromyalgia: The Huffington Post bombs again

As you might be able to guess, because fibromyalgia is a syndrome of unclear etiology with a wide variety of physical complaints, widely varying severity, and a clinical course that waxes and wanes, it is a woo magnet. Indeed, many conditions that scientists do not yet understand well and/or for which we do not yet have particularly good treatments are woo magnets.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Dear Imprudence: Inappropriate Discipline

Content note: This Dear Imprudence discusses the use of hitting to ‘discipline’ children.

Dear Prudie’s Monday livechat featured a doozy of a question:

Q. Discipline: My wife and I have been married for eight years, and we have three wonderful children, two girls and a boy. While we agree on most everything, the one thing that really causes trouble is our son, specifically how to discipline him. He is 6 years old and has mild CP and also very high functioning autism. Now my wife thinks that because of his “special needs” he should not only treated differently, but also disciplined differently. I say that consistency is the key and that the Bible says to “spare the rod, and spoil the child.” Who’s right?

Let me make this answer simple, Prudence:

Neither of you is right, Discipline. There is absolutely no reason to hit children, ever.

There you go! That was easy. Sadly, it’s not what Emily Yoffe said.

A: I hope your son’s special needs will be a special gift to your entire family and help you rethink your approach to discipline. I absolutely agree on the need for consistency, especially with a child dealing with autism. But all your children should have consistent, compassionate care, not consistent smacks to the backside. (And the Bible says lots of things I’m sure you don’t take literally.) Lack of corporal punishment does not mean you allow your children to run wild; it means showing them there are better ways to get people to behave. Please talk to the professionals helping you with your son about the most effective ways to discipline him. I’ve recommended the work of Haim Ginott before, but please read one of his books. Even if you don’t use all of his methods, he will help you see the world through the eyes of your children.

Let’s break this down, starting with the first sentence, which made me gag violently. I could really do without classifying disabled children as ‘special,’ period, and especially not as ‘special gifts.’ Disabled children are not ‘gifts.’ They are human beings. It doesn’t surprise me to see Prudence using this kind of language. After all, it’s very widespread and commonly believed, but it irks me nonetheless. She’s widely read, she has a big platform, and she has the power to influence her readers and make them rethink the way they approach disability, simply by not engaging in disability tropes and pushing back on commonly believed narratives. Especially in this case, where it seems pretty clear to me that the use of quotes in the original letter is intended in a snide, spiteful way.

Prudence’s next section, condemning the use of corporal punishment, is pretty solid. I’m well aware that my blunt approach would probably be less than ideal if the goal is actually to convince people to stop hitting their children and calling it ‘discipline,’ it just happens to be one of the things in the world that makes me incendiarily angry and I really don’t know how to push back on it in any way other than incoherent rage. I did like that she specifically used the word ‘compassionate’ in her commentary.

Finally, a recommendation of a book by a (to my knowledge) nondisabled child psychologist. I know Ginott’s books are very popular, but I find it interesting that Prudence would say the letter writer can ‘see the world through the eyes of your children’ by reading a book written by an adult who doesn’t share lived experiences with one of Discipline’s children. Why not recommend works by people with autism and cerebral palsy? And why rely on adults to tell you how children think, feel, and view the world where there are plenty of children around you can interact with directly?

Commenting note: FWD unilaterally condemns the use of corporal punishment on humans of all ages. Any comments defending it/suggesting it is ok in ‘certain circumstances’ will not be approved, so do us a favour and don’t submit them.

Heel, toe

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Just

My beginning is like this: I was born a full three months before my expected arrival.

I apparently couldn’t wait the whole nine months to come into the world. This early arrival was rife with complications, however: a brain hemorrhage, one collapsed lung (I still have under-armpit scars from the surgery), and, the kicker — cerebral palsy as a result of premature birth. After they found the hemorrhage, the doctors did not expect me to survive.

The hemorrhage stopped on its own. No one could figure out why.

I was in the ICU for a long time after that — in a special plastic case to protect all three pounds of me from hospital elements.

My early birth was unexpected, as was my survival of the mysterious hemorrhage. Both of these things happened for no particular reason.

*

There are a lot of people who seem to subscribe to the “just-world” theory of events — that is, anyone who has anything bad happen to them has done something to “deserve” it. One sees this attitude thrown around quite a bit in relation to disability and illness — for the smoker who gets lung cancer, for some people who become severely disabled due to accidents, for the “angry” or “repressed” person who is diagnosed with a deadly illness. One sees it in so-called New Age “theories” of illness — that illness is a physical manifestation of bad karma or some other buzz-word often appropriated from a non-Western belief system.

But what of those who are “born this way”? What could they possibly have done in their “past lives” to have disability and/or illness be a feature of their current life? Could I have been, for example, a dictator or Bathory-esque ruler in a past life? I am not one for metaphysics, so I am inclined to think that the answer is no. Besides, were there definitive proof of past lives, it’s not as if every single New Age person could have been a saint in his/her/zie’s past life. So when these folks try to utilize my CP, or my depression, or my fibromyalgia as “proof” that I am or was a bad person and they are good people who inhabit a world of unicorns pooping glitter or somesuch, I tend to get a little upset and/or snarky at their pushing pseudo-enlightened rationales as making any sort of sense.

Disability is not proof of a “just world.” It is not a punishment, nor a tragedy for those of us who live with all sorts of disabilities, or whatever dichotomous thing that various social and cultural attitudes have constructed it as. It is one facet of human experience.

For many of us, disability just exists, or just happens. And for whatever reason, this terrifies many currently-abled people.

Why am I surprised by this?

To begin, rather pithily: I have had very mixed experiences with medical professionals throughout my life. Some have been fantastic. Some have been middle-of-the-road. And, as you might expect to hear from a person with a chronic pain condition, some have been absolutely awful.

Recently, I had a fantastic experience in a consultation with the oral surgeon who will be — at the time of this writing — removing the three wisdom teeth that I have in my skull [note: by the time this post is up, I will be recovering from the surgery and therefore on a bit of a break from blogularly goings-on]. Given my past experiences with medical professionals, I was not optimistic going into the consultation. I have a pretty spotty history when it comes to dental sensitivity, have been labeled an “anxious” patient in the past because of said sensitivity issues, and thus have a mountain of concerns about surgical procedures because of the medical conditions that I already have — cerebral palsy and fibromyalgia among them.  I was fully expecting that the surgeon would either minimize and perhaps outright dismiss my concerns during this appointment; worse, he might actively resist giving me anything other than over-the-counter pain medications for what is known as being a very painful procedure, as fibromyalgia patients seem to have a reputation as being “drug-seeking” among some people in the medical community and in the popular imagination at large (to say nothing of the ridiculousness of getting one’s wisdom teeth removed as a method of obtaining prescription drugs).

Interestingly, this was one of those times where I would be happy to be wrong. The oral surgeon not only explained the actual procedure to me in great detail, but listened very patiently to my concerns about possible issues due to increased pain (possibly relating to fibro, as it tends to flare up after any medical procedure that involves high doses of medication that I do not normally take) and muscle spasms (that would be the cerebral palsy, which has left me with muscular weakness on the left side of my body and occasional spasm attacks in my left leg). He also asked many questions about both the fibro and the CP, and reassured me that he and his staff would watch for things relating to each condition that could possibly occur during and after the procedure.

This consultation — and the oral surgeon’s taking my concerns so seriously — was a welcome break from the fighting-an-uphill-battle-with-my-bare-hands sort of feeling that I’ve gotten from some past medical and health-related consultations. I am, of course, of the opinion that these sorts of positive experiences should not be this unusual, and that they apparently are so unusual gives me pause for a myriad of reasons.

Yes, I have a limp, and no, it’s not really any of your business

I have dealt with disability, in various capacities, for my entire life — this started when I was born three months prematurely and was affected by cerebral palsy (left hemiplegia, if anyone really wants to know) as a result.

I know what you might be thinking: You cannot possibly have CP, Annaham! CP is always severe.  It’s always noticeable to people other than the person who has the condition. CP always sticks out, blah blah blah, insert other sundry stereotypes about CP here (because there seem to be a lot of them).

And you’d be partially right, sort of like how my left leg is partially paralyzed. Oh, people notice my limp. Sometimes, they even point it out to me or concernedly ask about it, as if I am too stupid to notice that one of my legs is too short and that my left foot constantly makes a valiant effort to make up that difference:

“Are you okay? You’re limping.”

“You have a limp.”

“What’s wrong with your foot?”

“Why do you have a limp?”

Now, since I have no obligation to a.) respond, b.) educate these potentially well-meaning folks about my condition, or c.) give a shit, I have developed a coping strategy that works best for me, and it is to ignore these people and/or pretend like they might be talking to someone else. Surprisingly, it usually works, particularly when I do not care about seeming rude.

I don’t know what it is about certain bodies and the fact that some people feel entitled to treat said bodies as if they are public property. This body-as-public-property trope is commonly wielded at people with bodies that, through no fault of theirs, don’t fit the expected “norm” and who may be marginalized because of it: women, non-white people, fat people, trans and genderqueer people, people with disabilities, and others. And woe betide you if you fit more than one — or even several — of these non-normative categories, because then people might feel really entitled to comment on your body or its workings (or non-workings), if these things are at all apparent. In my fairly limited experience, it seems as though certain bodies and their parts constitute some sort of threat to an established order (in my case, this would be the abled order in which “normal” legs or feet do not have limps) that needs to be constantly pointed out and then monitored for the person’s “own good,” whether they are fat, disabled, unexpectedly gendered or not-gendered, or otherwise.

It seems vaguely panopticon-ish, and more than a tad creepily paternal: Hey, she has a limp, but she must not know it! We need to tell her for her own good, so that she knows and can maybe work on correcting it. No matter what the person’s intentions are (because these intentions may be sort of twisted “good samaritan” intentions), that’s the subtextual message that I get when somebody decides to inform me about my limp. Regardless of intentions, this sort of monitoring mostly ends up looking creepy and awkward for all involved. Some “good samaritan” may want to focus on my limp and how out-of-place or weird it looks, but just because I am out in public — limp and all — does not make the way that I move around (when I am not in too much pain to move, that is) any random stranger’s business.

My cane

Annaham plus stylish inlaid wood cane equals awesome

[Image description: a woman’s hand rests on an inlaid wood cane.]

I use a cane! This should not come as a surprise, but often when I am out in public, it does. People seem surprised to see a young person who uses a cane; while I have not gotten people “confronting” me about it directly — quite unlike my limp caused by cerebral palsy, which is more often cause for extremely invasive personal questions and/or people asking in an oh-so-concerned tone of voice if my “foot” is okay (even though it’s not just my foot that is affected by the CP!) — I have gotten stares because of it.  Staring seems to be one of those things that folks think they can get away with, but most of the time, they can’t.

I am used to being stared at; it’s something I have dealt with quite a bit, as a person with several disabling conditions (one of which — cerebral palsy — I’ve had since birth). In Western society, it is usually considered impolite to stare, if not outright rude. And yet, people do it anyway. There is no faster way to learn this than to be a person with a body that does not fit mainstream expectations of “normal” — whether this body is marked by race, disability, sexuality, class, gender(ed) performance or status, fatness, or other signifiers that mark someone as different from “the norm” (which is, in itself, socially constructed).

I don’t usually get offended if I catch someone staring at my cane; I do get offended, however, when the stare-er tries to pretend that s/he/zie wasn’t staring, mostly because this seems like kind of a dishonest move, and I tend to favor honesty. Ideally, no one would stare at my cane, or at me, and I could just go about my business when I’m out in public. But there’s a question, additionally, that’s always on my mind about having a body that isn’t totally mainstream (even if the body in question has other types of privilege): are these people who stare actually noticing me in a way that matters, or are they thinking, “Thank [deity] that I’m not like her.”

“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.

A Weird Moment

A cautionary tale, of sorts: Back when I was a young, naive college freshman, I decided to attend one of those campus service/organization ‘fests (meant to introduce many other naive young things to the services available to them at university)–mostly because it was right in my dorm’s common room. Oh, and they were going to have free food. I would have been remiss to pass that up, as the dining commons food at my school was absolutely awful.

One of the organizations at this rather paltry excuse for a festival was the Center for Disability Services; as a burgeoning Women and Gender Studies major who was just coming into the “disabled” identity at the time (a result of having read Susan Wendell’s essay “The Social Construction of Disability” [which you can read on Google Books here] in my Intro to Women’s Studies class), I was rather excited about this. Context is probably necessary here: I was born three months prematurely and had a very mild case of Cerebral Palsy as a result. The CP, which left me with a permanent limp on my left side and a pronounced case of Supercrip syndrome during my childhood and parts of my adolescence, was something that I simultaneously wanted to claim as a disability and maintain as “not that big a deal”–the latter being something I had been taught to do in various capacities, by various social and cultural structures, throughout my life. In short, the Wendell piece had given me a little push toward claiming an identity as a person with a disability.

So, with good intentions and something resembling pride in my heart, I walked to the CDS table, where a woman was standing. The numerous info sheets and pamphlets on the table were perfectly arranged–a sign that this table had not seen too much “business” compared to some of the other tables. I introduced myself, and then took a pamphlet, adding with a smile, “I have CP, so I might be giving you guys a call soon.”

What I received in exchange was a look of skepticism so intense that I quickly lowered my eyes, and then backed away. Had I made a mistake? Was this a sorority table, and not the CDS table? Did she need my medical records, or the many photos my parents took of me in the ICU incubator during the months I spent in the hospital, as proof? Would my hospital ID bracelet–which, at one time, had managed to fit around my wrist, but now barely slid around two of my fingers–have been sufficient?

Many of the reactions to my CP from (seemingly) abled people had, up until that point in time, had generally conformed to one of two types, both of which irritated me equally: “Wow, you are so brave! That is an amazing story!” or “You don’t look disabled/like you have CP. You can’t really be disabled.” This woman’s wordless reaction to my (admittedly overly-friendly) “outing” of myself as disabled had fallen into the latter category.

I can’t say that I was surprised that I had gotten this sort of reaction yet again; what did surprise me, however–and struck me as somewhat ironic–was where it came from.

Recommended Reading for December 2

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

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

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

Guess what I want for Christmas!

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

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

Ugh.

Wheelchair Tourism covered at conference

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

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

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

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

Awareness Days

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

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

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

To Everything There Is a Season

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

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

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

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