Tag Archives: ableism

An OYD Airline Rant

I won’t apologize for her actions and I’m not sorry for what happened to you. It’s not in our contract to assist passengers with their luggage and we reserve the right to refuse assistance to anyone. If that’s what you need, then perhaps in the future, you should make other travel arrangements.

Well, to say the least, that is not the kind of response I expect to get from a customer service representative; not the Entry Level Line Memorizing Oh Dammit Did You Really Ask For A Supervisor people, and I certainly don’t expect it from a supervisor. Were I to get such a resonse I would certainly suspect that something slightly sinister was going on here at said establishment where I was complaining. After all, if I am speaking to a Customer Service Supervisor, things have reached a fairly epic proportion of shit deep inconvenience, because I pretty much go out of my anxiety issue way to avoid having conversations with people I don’t know in person (let alone on the phone). Because I have to weigh the cost of spoons spent on holding myself together long enough to get out the details of what happened, as I did recently with my complaint to Patient Admin about Nurse Midwife V, versus the benefit of getting shit cleared up so it doesn’t happen again to other people who may follow after me and patronize a company, needing services, like in this case, travel.

But here, this is exactly the case. Here, evilpuppy from Incoherent Ramblings From a Coffee Addict, who, expending great energy, spoons, and emotional well being tried to file a complaint on the completely despicable treatment doled out by the staff at United Airlines, and received this condescending and otherwise completely, well, jack-assed and ignorant response from someone who should have a working knowledge of how an employee on an airplane should treat a person with a disability. Not in an email response or even in a letter form; this response was delivered face to face. All of this after she already went to the trouble of pre-arranging accommodations for a wheelchair and made sure to note with the ticket agents — multiple times — that she would need assistance on the plane.

Just a small dose of what evilpuppy endured:

The wheelchair left me off at the door and after making sure I had all of my belongings, he turned around and left. I boarded the plane and made my way back to my aisle seat where I set down my special seat cushion and lumbar brace before looking around for a flight attendant to help me put my luggage in the overhead compartment. The attendant standing in the front section of economy was a blonde woman probably in her late 40s-50s and I called her over to explain that I needed her assistance because I wasn’t capable of lifting my luggage due to my disability. To my surprise, the attendant rejected my request while excusing it by saying: “If I helped everyone do that all day then MY back would be killing me by the end of the day!” I asked her how I was supposed to get my luggage stowed and her answer was: “You’ll just have to wait for someone from your row to come back here and ask them to give you a hand.” When I asked what would happen if no one would, her response to me was: “Well, normally a passenger is around to overhear something like this and they’ll offer to help with it on their own. You’ll just have to ask someone when they get back here.” Then she turned back around and went up to the front seats where she waited to “assist” other passengers.

I was completely flabbergasted, but with no other option, I sat down to wait and pulled my carry-on suitcase as close as I could to try to get it out of the way of the aisle. As I’m sure you’re aware, however, your aisles are considerably narrow and even my best efforts left half of even my small carry-on suitcase in the aisle. What’s more, rather than help me, most of the passengers simply knocked into my suitcase and shoved past me on the way to their own seats. Every time they hit the suitcase, it in turn hit me and jarred my back more and more with each strike. The plane wasn’t even half boarded and it already felt like the pain medication I’d taken less than a half hour prior to entering the airport had worn off as though I hadn’t taken it at all.

Now, I have endured some pretty meh-hessed treatment at the hands of customer service personnel. I have seen other people treated pretty horribly. I have had my disability status questioned, rejected, laughed off. I have had it compared to the fatigue of being a stay at home mother of two children (I am not downplaying the work of SAHMs, having once been one myself, but these are apples and well NOT APPLES!), and of course DIET AND EXERCISE! but never have I had someone so flatly refuse to acknowledge that 1) their co-worker/staff/employee so royally screwed up and 2) that their co-worker/staff/employee’s royal screw up really fucked my world up and over in a way that might just have rendered my next few days useless, since that might mean that I will then be spending the next two or three or more days in bed or on a couch with my feet up trying to recover from the aforementioned loss of spoons and emotional well being.

To put it concisely: Wow. That is messed up.

Not to mention, I am not sure I have ever patronized any business where it was standard procedure for other paying customers to assist a person in lieu of the paid employees who are standing around. It just seems lately that airlines are giving me more and more reasons to not give them more money than I can afford to basically be treated like crap.

I have never been told that it wasn’t the job of the person whose actual job it was to help me.

OOPS! UNITED STEWARDESSES! ITS LIKE TOTES YOUR JOB!

Once passengers are onboard the aircraft, our flight attendants can help with stowing and retrieving carry-on items, as well as providing wheelchair assistance to move passengers to and from the aircraft lavatory (although they cannot provide assistance inside the lavatory). Flight attendants may also provide assistance with taking oral medication, identifying food items on meal trays and opening packages.

Is there a single airline that isn’t treating humans like chattel these days? That isn’t outright pissing me off for one reason or another (well, Korean Air hasn’t yet, but I haven’t flown International since the Christmas debacle). I am beginning to think I will need to take a boat to get home the next time. And Space A military flights are a privilege I am willing flex more and more if I have the time and pain medication available. It might be worth it to not be herded on and off a plane like cattle, denied bathroom and water privileges for hours on end (which can be living hell to a PWD).

Oh, and also:

Then the flight is delayed. We sit on the runway for some time, and because of the new federal law requiring that airlines not keep people on the tarmac for more than 3 hours, they let us off for about 5 minutes before insisting we all get back on because we are leaving right now. We do not leave right now, or for several more hours. They let us off the plane again. Shortly thereafter, they insist that we all get back on the plane because we are leaving right now. We do not leave right now.

At some point after the second or third round of boarding and being told to sit down because we are leaving right now, a man towards the back of the plane stands up to get himself a cup of water. For context, this flight is (or was supposed to be) a 7:40 a.m. flight from Atlanta to New York, landing around 9 a.m. It is full of (mostly white) business people in suits. This man is brown, and appears to be South Asian. A flight attendant at the front of the plane, near where I’m sitting, sees him stand up and panics. She throws open the airplane door and starts yelling at him that he isn’t allowed to stand up, and that he needs to exit the plane immediately. The man is confused, and says, “What? I was only standing up to get a cup of water.” She yells out, “I don’t care, you’re off the flight! Get your things, you’re off the flight!” Water Man starts arguing with her about how he just wanted a glass of water, and he is happy to sit down now, but he’s not getting off the flight. The flight attendant says that she feels threatened and gets a supervisor, who in turn gets airport security, who in turn tell the man that he is going to be arrested and charged with a felony if he does not exit the aircraft. The man, probably smartly, exits the aircraft.

Like Jill passes over in her rant here, with all the hype of racial profiling being trendy, if you assert your right to a simple thing like a drink of fucking water while daring to be brown you can be thrown off of a flight.

Thankfully The Consumerist has picked up on this (although “who says she’s disabled”? Could we pour more salt on this?). I am not entirely sure how much good this does things like this, except that I give them all kinds of link love on Facebook when I find something relevant, so maybe this went viral? I would however, like to point out that the comments at The Consumerist are some of the worst disability blaming shite I have seen in a while (and it shows how safe my social justice bubble is). It seems that we, the PWDs, should not dare to carry on a bag if we a) need a wheelchair to get on a plane b) can’t lift it ourselves and c) have the audacity to want to be treated JUST LIKE EVERYONE ELSE ON A PLANE. Also, don’t forget, if you take pain medication, and/or dare to have a drink on the plane to settle your anxiety you are not to be believed when you make claims as to the crappy ass treatment you received. Nope.

Because there is no way in the entirety of the multiverse that you would ever remember something as abusive or as hurtful or as downright dehumanizing as what Dina the Customer Service Supervisor at SFO said to you, for the rest of your life, or how it made you feel at that moment in dog damned time. Evah.

PWDs are not human. We are not people who should be existing in the same world with those good, hard working, abled-bodied people who can do everything themselves. To hell with us, for not being able to lift our bags! Forget that we just maybe had to scrape together all the money we had to afford the damned flight in the first place so that extra twenty five dollars is NO BIG DEAL JUST CHECK YOUR DAMNED BAG YOU LAZY STONED JERKS!

Silly me for expecting human treatment for all humans.

Via commenter Livre at The Consumerist, United is apparently attempting to contact (or has, I am looking into it) in true “Oh Snap Kevin Smith Has One Million Twitter Followers DOOOOOO SOOOOOMETHING” fashion to try and do damage control sort this out.

Sort this out? That would be something, now, wouldn’t it?

h/t to my friend Kate on Facebook

Quick Press — Professional Sports and “Disabled Lists”

Many professional athletic teams in the U.S. and Canada (for Hockey and Baseball, but I do not know of other sports, or of other countries’ sports’ teams) have what are known as “Disabled Lists“. Major League Baseball calls it this specifically, where a player who is temporarily injured and can not play for whatever reason is placed on this list.

The National Hockey League and the National Football League have what are called “Injured Reserved Lists“, but these are basically the same thing.

These lists are made public, for a variety of reasons, not the least of which is for fantasy leagues and gamblers so that they are always on top of who is in and who is out of the game.

How does this poke you, gentle readers? Does this feel like an appropriation of language by people who make their living off of able bodies who stretch them to extremes?

Does this fall under the “temporarily abled” thought train that some of us use when talking about how our bodies will eventually break down, knowing that professional athletes will often succumb to serious injury at younger ages than expected by society due to the constant beating they take?

I leave it to you, now to discuss.

Guest Post: Storytime

Cara is a feminist writer who blogs at both The Curvature and Feministe. She likes The Beatles, vinyl records, and social justice, though not necessarily in that order.

The first time I saw someone say in a progressive space that it was ableist to use the word “lame” as a pejorative, I thought they were ridiculous. Honestly, I’m telling you right now. I did. I thought all of those things that you most commonly see argued whenever someone is called out on using the word or one like it. It’s not used like that anymore. No one is thinking about disability when they use the word lame. That’s not what it means. It just means bad, and it’s especially useful because it not only means bad, but also bad in a kind of pathetic and sad way … and no, I’m not going to think about what that certain connotation of the word means when it’s a word that also can be used to refer to a disability because it’s not used that way anymore, so it doesn’t matter.

I didn’t make an ass of myself publicly and argue as much. But I thought it. A lot.

And so I didn’t stop using it right away. I didn’t stop, because I used the word a lot, and because I liked using it. And I didn’t want to stop. And I thought that the reasons to stop were silly.

But I couldn’t say it the same way anymore. Every time I said it, every single time, I felt a jolt, a little jab in my spine, a little pain in my heart, a little tightness in my throat. It wasn’t because I thought I was being a “bad progressive,” because frankly the popular opinion among progressives was that using the word was fine and those who disagreed were wrong. It wasn’t because I realized that my brain was connecting pathetically bad things with disability, because I still didn’t feel like it was. It was because I had seen people say that when I used that word, it hurt them. And not only that it hurt them, but that it hurt them systematically, that it harmed them, and that the harm was oppressive.

I didn’t stop saying “lame” or any other word like it because I had a light bulb moment and realized the social connections between the different meanings of the word, and how there really is a reason that “lame” doesn’t just mean bad but uniquely and pathetically bad, when people with disabilities are so commonly portrayed as pathetic. In the end, I’m not entirely sure that it matters when or even if I started believing that. Because it’s not why I stopped.

I stopped because I didn’t want to hurt people. I stopped because I didn’t want to engage in what I claim to advocate against. I stopped because people told me that it was doing them harm when I did it, and because it hurt me to realize that that hadn’t initially been enough. I stopped saying the word because I realized that it was enough.

When it comes to a lot of language that is offensive to marginalized groups — the kind that is exceedingly common and even generally accepted by most progressives, including the types who take pains to correct someone for calling something “gay” or “retarded” — I have to say that I have difficulty getting angry at an average person who uses it. That, of course, comes from a position of privilege, and a position of having been the person who didn’t know any better about 10,000 times. When it comes to most of these words, I am privileged. These words tend to not denigrate me as a person, my humanity, my existence. It is a privilege that I can say “they don’t know any better” and politely inform them otherwise, that I can give them the benefit of the doubt that they will try their best to not do it again. I’m not saying that I expect otherwise of different people, or that anyone else is wrong to get angry at someone who “doesn’t know any better.” At all. That’s just me.

But. When it comes to people who I know know better, who I know have been informed, who I know have been exposed to the harm that certain types of language can do, common though it may be, and then still not only use it, but use it so frequently that it seems like it’s almost on purpose as some kind of gross defiance … I don’t know quite what to think. But I do know it makes me really, really angry to see.

And it makes me wonder about their progressive credentials, not because I can’t believe that they fail to see the exact theoretical reasons and linguistic history as to why the word is one they should stop using. But because they know they’re harming people, people more and differently marginalized than themselves, no less … and just don’t seem to care.

This post originally appeared at Cara’s Tumblr and has been cross-posted with permission.

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…

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.

For Cereal, Stars and Stripes? Mocking “Paranoia” is Headline-Worthy?

OK, so I saw this one in my paper edition because I get it the night before (and technically a day late, since I am in the future!), but you can find it online too.

In the 16 March edition of Stars and Stripes writer Jeff Schogol wrote an article containing letters from people who sent letters to the Defense Department website. He calls the letters he said the DoD provided to him “the more bizarre feedback it gets” and notes that “[t]he authors’ names were withheld, but all spelling, grammar and paranoia are authentic“. (emphasis mine)

The article, titled “Airborne bears to catch bin Laden and other letters to the Pentagon” seems little more than a great way to laugh at people for myriad reasons. Let’s poke fun at their lack of intelligence! See how they can’t construct proper sentences? Those silly people without proper educations and who aren’t newspaper columnists or Pentagon officials! Ha ha! That’s so funny!

There were several letters published by Jeff Schogol in his article that I don’t feel comfortable publishing here, because I don’t feel that it is proper to display these letters that were meant to be private correspondence and won’t further his ableism. I don’t want to further hurt a person who might already be pained by finding hir something they never meant to have public spattered all over the internet and a military wide newspaper. They were not meant for this type of dissemination, and I think it was vile of whichever Pentagon employee thought it was appropriate to release them to a newspaper. I also don’t feel that it is in good taste to print a letter in a newspaper with the intention of laughing at the “crazy” person, as it is clear here that is what is meant. We are supposed to have a good chuckle at the supposed ludicrous ideas that are put forth by the letter writers. Schogol obviously feels that it is OK to call people paranoid and make light of mental illness and disability. Har har.

I am going to invite you to write to Jeff Schogol at Stars and Stripes and let him know that you don’t think it was a great idea to run this article, or that it was in good taste to reprint these letters. Or if you feel inspired, maybe you would like to use the same venue as the original letter writers who thought that they were writing private correspondence to the DoD, and let them know just how unprofessional it was to release those emails to a newspaper for a chuckle.

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.

This is Why We’re Always on about Language

I’m not linking to the original source because the specifics don’t matter. This isn’t about the individual people or the individual documents involved. This is just an example of how the use of ableist language harms disabled people. Sometimes our posts on ableist language are on the abstract side, so here’s something real concrete. The ableist language is “insane” used to mean “this is bad.” The disabled people are me and everyone else who has been abused and has mental illness.

Some context is necessary, though. The first quote is from the comments thread of a post on intimate partner abuse. More specifically it’s about the way people outside the abusive relationship contribute to the abuse. Even staying “neutral” or “not getting involved” contributes to the abuse: when power is unequally shared among people in a relationship, staying neutral is siding with the person with the most power. But much of the time people don’t stop with that much. They actively side with the abuser. (The reasons for this is a subject for another post. Graduate degree dissertations. Books. I’m headed in a different direction right now.)

One of the commenters expressed disgust with the people who’d taken the side of the abuser and ended the comment with:

How insane is that?

Here’s my reply.

It is appalling, frustrating, disappointing. It makes me want to cry every goddamn time I see it because I know my abusers are fine upstanding successful people and I’m fucked up and broken and poor.

It is not insane.

I am insane. I have had delusions and paranoia and hallucinations. There are parts of me I do not talk about ever because I am deeply ashamed of them: what’s wrong with me that this is in me? How can I be this fucked up? I spend every day working on not killing myself because the parts of me that hate me and want me dead never shut up.[1. Unfortunately, none of this is even exaggerated.]

I would like, please, to not have to be the metaphor for abusers and their abettors as well as their victim. I carry enough shame already.

This is why we talk about ableist language. It’s not because we hate fun. It’s not because we have no sense of humor. It’s not because we want to take people’s words away.

It’s because we shouldn’t have to be the metaphors for our own oppressions.

“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.)