Monthly Archives: October 2009

The Labor of…

life changes, , , , ,

Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability.  This is a space to share experiences.

Sleep.

My relationship with sleep has changed dramatically throughout my life as I have grown and changed.  I am told that I was one of those babies that slept so soundly that my mother could vacuum under my crib during nap time and that even a diaper change didn’t phase me.  Later as a toddler I would protest nap time only to succumb to two solid hours of heavy, sweaty sleep.  My middle childhood years were plagued with chronic bed wetting, which my mother didn’t totally understand at the time (she would make a scene of putting cloth diapers on me in front of the family at eight years old, or showing my wet sheets off to anyone who would see them) until they discovered that I was both a deep sleeper and had a tiny bladder that didn’t keep up with the rest of my body’s accelerated growth.  I also had frequent kidney infections which exacerbated the problem.  In High School I crawled through with an average of five hours a night between working as many hours as child labor laws permitted on top of track and band practice with AP classes and boyfriend who somehow managed to squeeze in there.

College was my first experience with insomnia.  I am pretty sure it was related to my OCD and subsequent depression, but I can’t be sure.  I would go for days on very few hours of sleep, and after a couple of weeks I would crash and not be able to stay awake at all.  I eventually scheduled all of my classes on Tuesdays and Thursdays so that I could work from sun up to sun down and beyond the other five days while still participating in college marching band (Go EMU!), and still managed to perfect a beer purification system out of my liver.  Some how sleep was something I was able to live without for extended periods of time.

Sleeping positions changed as well.  I was a stomach sleeper for as long as I could remember until I got pregnant at 21, and even then I only gave that up when it became physically impossible.  At that point I begrudgingly gave in to the side sleeping that was all my doctor could rant about.  I had to use around five pillows in addition to the ones under my head just to get comfortable on my side.

Sleep was something I took for granted.  I loved sleeping.  I hated that I having to admit that I needed it.

Now, I dread it.

Sleep has changed again.  I have to consider every tiny detail of sleep, from the time and amount to the bedclothes and the temperature.

I have to get just the right amount.  I can’t sleep too little or I will have no energy at all the next day and my body will hurt intolerably to make up for the energy I didn’t restore.  If I sleep too much I can’t adjust and I will fall asleep if I sit still long enough.  I have to try to get to sleep at the same time every night, weekday and weekend.  We don’t have the luxury of “school day” or “not school day”.  We still have to adhere to relative bed times on non-school days to keep my body on a schedule.  Not being tired can not be an excuse, and that melatonin supplement pill becomes a dear friend, something that does not interact with my meds, but helps me fall gently asleep.

The environment has to be just right.  Too much noise will distract or frustrate me.  If I am awake or anxious it keeps my brain active and stop me from relaxing.  If it is too quiet the silence is too loud (plus, I have tinnitus, so the ringing gets a little intense), so we have an iPod with sleep music to play quietly (it has ocean sounds under music!).  The Guy is a cuddly sleeper, and he is very conscious of the possibility that he could hurt me while we sleep.  He worries that he will also make me too warm, and sometimes I worry that he doesn’t sleep well because of this (although, in truth, the only being on the planet that could sleep easier is a newborn puppy).  He will run a fan or the AC if he thinks that he is kicking off too much heat, but as soon as he thinks it is too cold he shuts it off.

The mattress that came with our beautifully furnished ville in Seoul (we could only bring so much weight of our belongings to Korea) was far too hard for me to sleep on and caused me so much pain that I would cry and could never find a comfortable way to lie, so we had to put a memory foam topper for it, which isn’t as good as the memory foam mattress we had to put in long-term storage in California, but it helps immensely.  The pillows have to be just right.  One isn’t enough for my neck support, but two is too many, so we had to get a special cervical pillow made from foam to support my head and neck just right, otherwise I would wake up with a worse headache than I already have almost daily.  Since being pregnant I am unable to sleep any way but on my side, and I have had to learn how to do this without my limbs touching each other, because the weight of them is too much to bear.

The bedclothes have to be right.  Soft enough and not heavy, because sometimes the weight on my legs can cause me to cry from the pressure.  If they are too thin I get too cold, and extreme temperatures one way or the other exacerbates any existing pain.  This goes for all the blankets we use.  We also have to make sure that they are tucked in well (this is where my boot camp education pays off!) so that they don’t come undone and wind around my limbs which will also cause me to awaken in agony, but not too tightly so that I can move around freely so my joint don’t stiffen.  The tiniest things that would maybe bother someone else, cause them to shift in their sleep, will jolt me wide awake crying out in pain.  This ties in with nightclothes, too, because I have to make the same decisions.  I can’t have things that bunch up around my legs, but I have to have enough layers to keep me warm, and socks that are thick enough but that don’t have restricting elastic.  It’s a razor thin edge.

Any little misstep one way or the other throws a sprocket in the works and that can mean the difference between a tolerable pain/adequate energy day and a miserable one.  It can mean the difference between a day where I can accomplish a few tasks and maybe have time for a brief walk or a day with my feet propped up carefully.  All of this work has done nothing for my relationship with sleep.  I still love actually sleeping, but hate admitting that I need it.  Now, however, I hate that I need it so badly, and that my body will take it whether I am willing or not, but that even if I do need it sometimes it will turn upon itself to disrupt what I have worked so carefully to craft.  Sleep is no longer indulgent or relaxing or restful.  Sleeping has become a laborious effort.

Chatterday! Open Thread.

chatterday

This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world?

Today’s Halloween candied chatterday backcloth comes via Epicute, a treasure trove of photographs of gorgeous cupcakes, candy, and other goodies. The accompanying text reads:

Why don’t they make medicines that look like this? Why?

three soup spoons are filled with brightly coloured Japanese rock candy.

Ableist Word Profile: I Feel Your Pain!

101, Ableist Word Profile, feminism, , ,

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

I hear this one all the time.  I am pretty sure I am very very guilty of using this one.  I saw it used the other day in a context that I am not going to get into here, but it really struck it home for me in a way that made me jump (not at all literally) and decide that it needed to be unpacked here a little.

I feel your pain.

I had to go to the school to pick up my daughter because she had a slight fever.  Anything will get them sent home during the Flu Panic going around right now.  We walked to the nearest shoppette to pick up some canned soup for lunch before going home, and The Kid had that Look.  The tired eyes, with the dark circles and the pallor that told me she just wasn’t feeling well.  We got our soup and orange juice and a cab to get home.  She nodded off on the ride home as I stroked her hair, shoving aside my own pain wishing I knew how she felt and what she needed.  She can only tell me so much.  She can only give me clues to what it feels like to be inside her body feeling her experiences of being sick.  She is the only person who can communicate the way it feels to have that fever or that headache or to have that need for a nap and soup and cuddles and blankets.  No matter how much I understand how colds and germs and immune systems work, and no matter how well I know that low grade fevers are actually good for you, only she can tell me how it feels.

I can’t feel her pain.

Just like you can’t feel my pain.

One of the core principles of feminism, IMO, is the concept of bodily autonomy.  My body is mine.  Mine and mine alone.  You don’t get to tell me how to manage it, you don’t get to touch it without my permission, and anything that tries to attack me from the inside is treated as an enemy hostile if it dares grow uninvited.  This stems from the fundamental idea that you or anyone else who isn’t me could never understand my body better than me.

Coinciding with that, is that no one other human being other than me knows how it feels to be me, to be in my body, to literally feel the pain of living in this body.

Even the best of my doctors, the ones who care with all of their compassion, the ones who were and are capable of great empathy, can not physically feel my pain.  No matter how many fancy diplomas are on their walls or how many scans they’ve run or how many times they’ve played pin cushion with me, they still need me to resort to the handy dandy pain scale as a rubric for making this clear to them.

So, how can you, random stranger, on a random message board or in a random comment section feel my pain?

Can you feel the moment I wake in the morning, those three fleeting moments where I forget and turn my head too quickly, jarring my neck and triggering a migraine that has been hanging over me like a shroud all night?

Can you feel the way my body feels like it is bruised in all of the places it rested against itself or the mattress all night?

How can you, random person in line with me at the supermarket, feel my pain?

Can you feel the pain that my hip and other joints are causing, necessitating the cane, or that the cane is causing my back and shoulders?

Can you feel the dizziness that the blearing pain in my head causes?

How can you, random family member/friend/concerned citizen, feel my pain?

Can you feel the numerous side effects that my body must endure from the various medications I need to make it through a day?

Can you feel the rawness of my throat from the numerous times one of those side effects was not being able to hold a meal down?

I am not discounting the way that you want to relate to me, or to express that you share in my disapproval of something.  I understand that you want to sympathize with my frustration.  You may even want to align with my feelings, or appreciate my sentiment.  There are lots of options that you have that don’t somehow imply that you have some kind of insider info on the goings on of my body or what it really feels like to be me.

Quotations

class issues, feminism, intersectionality, Quotations

Being discriminated against or exploited because one is female may be painful and dehumanizing, but it may not necessarily be as painful, dehumanizing, or threatening as being without food or shelter, as starvation, as being deathly ill but unable to obtain medical care.

– bell hooks, Feminist Theory From Margin to Center

Recommended Reading for October 30

recommended reading, , , , , , , , , , , , ,

#Antidev: Some thoughts on disability “devotees”

The issue of disability devotees — and let’s call a spade a spade here: they’re fetishists — divides the disability community at every level, from academia to, well, Facebook. It’s something women with visible disabilities encounter regularly. And I believe that, while the extremists are relatively rare, the growing acceptance of “devotees” online will trickle down into the broader social constructs around disability.

It’s widely believed that people with disabilities are viewed (in contemporary Western culture, at least) as “asexual.” The truth is more complex. We certainly do not fit the airbrushed-cover-of-Vogue ideal of beauty that is shoved down our throats. But then again, neither do all but a few supermodels on the planet; we don’t consider 99.99% of women as asexual, though. So here’s a key point: differentiating beauty (or physical attractiveness) from sexuality. To be sure, sex can be different and require a bit of creativity and patience, but most women with physical disabilities (at least, the ones I know!) have pretty normal sex lives. Nevertheless, because we can fall so far outside the norm of what is considered attractive, we (like all women) tend to conflate general beauty with sexual attractiveness, making us easy targets for people calling themselves “disability devotees” — sexual fetishists who objectify women with disabilities and reduce them to the sum of their (disabled) parts. Many women with disabilities entertain such advances, or even encourage them; when you’ve lived in a society rife with ableism it can be easy to believe that your disability defines you (and as a woman, that your sexuality defines you), and fetishists play right into that mindset.

Personal Situation

Now that I know all these things about my father I can‘t stop thinking about it (especially the new info in addition to the terrible tirade from him the day before). I don’t want to live with him anymore, but I don’t really have any other options. I need constant care and there’s no one else in my family who is able to take care of me. I know everyone says this, but he truly does love me and wouldn’t be able to take care of me like this if he didn’t. Out of everyone in my life he’s given above and beyond anyone else when it comes to my caretaking – he’s here full time and any one else is less than once a month. But I can’t stand to be around him anymore. I have so much anger. I’m angry how he treated my mother, and indirectly caused her to hurt me. But I’m angry at my mother for directly hurting me. I’m angry at my father for having such an anger problem that we had to be afraid of it. I wish I was healthy so I could just move away, but my disability is so severe that I really can’t do anything for myself and need the constant care. I don’t want to go to some nursing home – I’ve heard too many stories about that to trust it.

One time in the past when he exploded emotionally, I called a nearby shelter because it was having such an emotional impact on me. I told them about my physical situation and they said that they were not handicap accessible and referred me to another shelter. Neither shelter would be able to care for me in the way that I need it. I just don’t want to be alone in this world – it‘s not just emotional, I need a someone to physically protect me because I am that fragile. It sucks that my family sucks, but they’re all I’ve got right now and they’ve helped me in a lot of other ways.

In the news:

Via email from Ira G.: Minds Interrupted: Stories of Lives Affected by Mental Illness:

The three will be among eight Baltimoreans who will discuss the ways in which mental illness has wreaked havoc with their lives in a program called “Minds Interrupted.”

Participants wrote and edited their intimate, sometimes funny, often harrowing tales at a recent workshop that included tips on performance skills. Tickets will be sold to the show, which is being held at Center Stage, and which was modeled on the popular Stoop Storytelling series in which nonactors tell seven-minute-long anecdotes about their own lives.

The hybrid nature of “Minds Interrupted” can be perplexing: Is the evening a high-minded attempt to publicize a vexing and misunderstood social problem, or is it entertainment? And can the two categories successfully be mixed?

Five benchmarks for social assistance [Canada]

The next bold move the government must make is to stick to its guns on a comprehensive review of Ontario’s broken social assistance system.

The commitment to review Ontario Works and the Ontario Disability Support Program – made in the province’s poverty reduction strategy last December – has been agonizingly slow to get off the ground.

With the first anniversary of the strategy quickly approaching, more and more Ontarians are being forced to deplete their savings and join Ontario’s swelling welfare rolls.

As the province moves to more effectively employ resources to meet people’s needs and promote economic recovery, we can no longer afford to wait.

Student beaten to death in his Sac State Dorm Room

Scott Hawkins had Asperger syndrome, a form of autism, “that made him very obsessive about his favorite things,” his father said. He especially enjoyed studying ancient European and Middle Eastern history and was hoping he could graduate with a minor in one of those areas, his father said.

“He could go on and on about the history of Rome or the reasons that the Greek empire did this or that,” Gerald Hawkins said.

The attack was reported just before 2:30 p.m. Wednesday when one of the dorm’s resident assistants called police after hearing a loud disturbance coming from one of the suites.

How to Be a Good Doctor

accessibility, bodies, happy posts, medical practice, mental health, normality, sexuality, social attitudes, , , , , , , ,

Update: It was pointed out, correctly, that part of this post contained a statement that made a generalization based on age. That statement has been removed and the post updated with this message. It’s not feminist, and it doesn’t belong here. I’m sorry.

I actually had a really good experience with a physician recently. Like outstanding. With a specialist even — an endocrinologist, so if anyone in the northeast Texas general area needs one, I can recommend him without hesitation. I was kind of nervous; I’d seen an endo before when I was starting my transition but stopped because he was a really huge jerk. (My GP wasn’t entirely comfortable with writing scripts for hormone replacement but has been willing to for a while now. She’s also recommended and trans- and queer-friendly.)

Accessibility was poor to okay: I could have done with a chair by the reception window while waiting for them to copy my ID and insurance card. To get from the curb cut by the reseved parking to the front door, one has to go down the sidewalk across the front of the patio to where the ramp up the patio is. At least three cars were parked so that their noses stuck out over the sidewalk. If you couldn’t squish down to 18″/46cm wide, you couldn’t get through there. The doors were all unpowered and the front doors were on the heavy side. I didn’t see Braille signs at all. There was, blessedly, no music and no TV in the waiting rooms. The exam room was freezing; fortunately for me I’m tall and the ceiling was low and I was able to close the air conditioning vent but that’s not a widely available option. There were wide spaces around the furniture in the waiting room that looked like they’d easily accommodate wheels and other assistive devices. Some of the furniture was squishy but some wasn’t and the non-squishy furniture had arms to push up with.

They got to me right about when my scheduled appointment was. They weighed me, measured my height — 202lbs/91.5kg and 5’11 3/4″ (yes, they really measured me to the quarter inch ((sheesh)) and yeah I’m that tall — people comment constantly on how nice it must be which it kind of is except when I’m trying to buy clothes: for all that they love models my height designers apparently don’t believe women don’t come my size and shop at Target)/182cm — with my boots off, and they did bring me a chair for getting them on and off without my having to ask for one.

We waited in the exam room less than ten minutes. Maybe five. The office had mailed me a new patient packet with all the usual stuff to fill out (and the usual uninclusiveness of gender- and sex-variant people on the form, sigh *tick* F). The doctor apparently had spent the five minutes reading and absorbing it because he came in and introduced himself and greeted the wife and me as Mrs. and Mrs. Brown. It felt really good because NO ONE DOES THIS even the people who know we are legally married. Holy shit. The wife explained that I had an autism spectrum disorder and was not having a good day communication-wise. Also that even though I was not talking much today I was plenty smart (which is a construction I’m unfond of) and could understand doctor jargon (this I’m fine with — it’s a skill, not a definition of a person). He told us that on Mondays he had a resident following him around and would we mind if he joined us for the exam?

I’ve had doctors ask this badly before. Often it’s with said resident already present so refusal is an explicit personal rejection and difficult for even a lot of neurotypical folks, never mind those of us with moderate to severe social anxieties. This doctor asked it with the resident on the other side of a closed door. It really actually felt like I could have said no and it would have been okay.

He liked that I had typed up a list of all my surgeries and meds, the dosages, the schedules for taking them, and what they’re for — it’s a long list, twelve prescription meds total — and expressed sympathy that I needed them all. Even though my wife was helping me communicate, he mostly spoke with and to me. Once when he was looking at his notes he missed that I was nodding in response to his question and he apologized for not watching to see my response. When he was working out what labs to order, he noticed what insurance we had and apologized that we couldn’t use the lab in his office but would have to go to the one (not far away) that our insurance company had a contract with or we’d have to pay for the lab work. A DOCTOR. I’ve never run into one that noticed this stuff before, never mind knew what to do with our insurance company.

In short he seemed to be respectful of all the ways I was different: physically impaired, neurologically variant, queer, trans, everything. And genuinely respectful, too, not in that fake-ass “I don’t see the ways people are different from me” bullshit. [Age-based generalization removed by the author.] It was a really nice part of what’s been a string of mostly crappy days.

I’d really rather not have anything endocrinologically jacked up (and given the pattern of other Stuff that has been tested for, I’m not expecting that anything will be very wrong here either). But if I have to have something like that, I’m glad I know who to go to. ‘cos expertise is one thing. Respect like this — on the first time seeing me, on one of my bad days? — is rare. I wish I could drag all the bad doctors I’ve been to and gritted my teeth through seeing to make them watch this young man do brilliantly with a patient who is admittedly not exactly the most conformative person ever and yell “See? This is how you do it! This is how you make all your patients feel like you care about them.”

Cross-posted at Impermanent Records.

Recommended Reading for October 29

recommended reading, , , , , , , , , ,

Sexy with a Disability:

It’s not like there are many role models out there in the media. The disabled are rarely portrayed as sexy. Brave, yes. Melancholy, sure. Angry about their lot, check. Objects of concern and pity (stop calling me “special”!). But sexy? No. The hot babe who gets the guy isn’t limping toward him, gnarled fingers grasping his strong shoulders as they kiss. And if she is in a wheelchair, it is only temporary.

Ally Issues: Feeling Useless:

At the same time, I have this nasty prickly little feeling inside me which tells me, “what right do you have to write about this issue? You’re perfectly able-bodied. You’re so able-bodied you’ve been holding write-ins at the Paperchase Cafe for years. It’s not like you’ve ever done anything to be a good ally to people with disabilities.”

The horrible thing is that the voice is right.

I’m wondering though, if it would be worse if I let the voice hold me back. That I have to wonder is, I think, pretty bad. Able-bodied people can talk about disability issues, and do, all the time. I’ll probably fuck up at some point, but that happens, right?

A piece of ableist language I could really do without

It’s that dreaded question, upon meeting: So, what do you do for a living?

It hurts. And what’s worse, people often don’t stop there; they keep on asking. ‘Oh, you don’t work? Why not? So are you on the dole then? Are you looking for work? But how do you afford to live? A pension? What are you on a pension for?”

Honestly, sometimes I just want to tattoo it on my forehead: “Hi, I’m Cinnamon Girl, and I’m insane. Thanks for the tax dollars!”

You see, I have a psychiatric disorder, and receive a disability support pension as a result. I don’t work to make my living. I also don’t want to disclose to every last person I meet that I have a mental illness. But, with that loaded innocent question, that’s pretty much what I’m forced to do.

Bones and Invisible Disability:

To be clear, Brennan’s Asperger’s is never directly mentioned by her co-workers. Her social awkwardness, typical of the syndrome, is frequently the punchline of jokes or leads to the repetition of one of Brennan’s favorite phrases, “I don’t know what that means.” However in interviews, Emily Deschanel, the talented actress who plays Brennan, often states that her character does have a mild form of Asperger’s.

The lack of awareness Brennan’s co-workers show about her Asperger’s, leads me to believe it could be considered an invisible disability. At first glance, Brennan appears “normal” and the only way her co-workers would know about her Asperger’s is if she tells them and then proceeds to advocate for her unique needs. In fact, she has made steps towards self-advocation already, at one point last season asking her psychologist, Dr. Lance Sweets, to help her understand social cues and to read facial expressions.

Dealing with disability is fine – it’s the phonecalls that shit me!

Peopel who don’t know you gasp and think life must be unbearably dificult, draining, and emotionally tough when you have a child with a disability – but to be honest, it’s the endless phonecalls, wrangling and organisation that can shit me to tears. Picking up Miz M from childcare yesterday, where she beamed delightedly and kicked her little legs and waved her arms, that was lovely. Trying to help her eat slices of mango was sticky but, hey, just fine. Making the fourth phonecall to the same organisation to try to organise for her mobility device to be fixed, on the other hand, brought a hot flush of frustration to my face and tears of irritation to my eyes. Put on hold while the woman I needed to speak to was on another call, after which the original unhelpful phone-answerer got back to me and said oh, she’s left now, and won’t be back till tomorrow. This, at 9 am.

Finding Myself in Unexpected Places

introspective, normality, , , , , , , , , , ,

On the way home from work the other day, the classical music station in Dallas, WRR 101.1*, played a really good performance of Beethoven’s Bagatelle for Piano in A minor, WoO 59 “Für Elise”. It’s pretty, of course, which is all it needs to be. But every performance (and every work of art and every published document) is an act of communication among the composer, the performer, and each person sensing it. Every person involved in every act of communication brings xer own perspectives and experiences to the social transaction.

I mention this to provide some context for how I reacted to this particular performance of this piece. I’ve it heard scores of times, probably, but I don’t know if I have since I’ve been thinking of myself as a person with a disability. The parts of it that rise to no real musical resolution felt, to me, like the steps of a dancer with a mobility impairment moving across a stage. Xe walks with a gait and doesn’t move with the precision of a physiotypical dancer, and sometimes it feels as though xe might fall (when the music rises in pitch and stops short of finishing the phrase to return to the core, lower-pitched theme), but xe dances anyway. And xe and xer dance are beautiful anyway. It could’ve been someone a lot like me.

It felt pretty damn good, actually.

Has anything artistic — and I include popular culture in art — recently (or memorably but not so recently) made you feel included? Even if it wasn’t necessarily the creator’s intent?

* It’s owned by the city and actually makes a profit. Naturally various Republican mayors and city council members have called it unfair competition (not that there’s another classical music station in the North Texas broadcastmarket) and have tried various times to get it or the transmission station or the broadcast license sold off. Fortunately for us, they’ve been unsuccessful every time.

Law & Order: “Dignity”, Worth, and the Medical Model of Disability

bodies, feminism, i'm right here, intersectionality, justice, medical practice, reproductive justice, social attitudes, television

As a feminist, I am pro-choice. Abortion should be safe, legal, and accessible.

As a feminist, I look at more than whether single, individual women have access to abortion. There is a much broader reproductive justice framework that must be scrutinised, critiqued and repaired so that all women have access to informed, supported reproductive choices.

Women who have been denied informed, supported reproductive choices in the past include more than the wealthy, non-disabled white women who dominate pro-choice conversations. Marginalised groups are as likely to be fighting for their right to reproduce as their right not to – people of colour, trans people, lesbians, and of course women with disabilities, who have been denied sex education and forcibly subjected to contraception and sterilisation for centuries.

To that list of marginalised groups, of people who are often denied truly informed and supported choices, we can perhaps add – people pregnant with fetuses who may have a prenatal diagnosis of a disability.

As a feminist, I believe that we can have the abortion-rights conversation without marginalising, othering, and disparaging people with disabilities. I believe we can talk about abortion within that broader framework of reproductive justice, and that we can confront the ableism that creeps into some abortion-rights conversations head-on. This takes effort; we must think clearly, write carefully, read closely.

Yes, some forced-birthers will try to appropriate our words for their own ends. We need to remember that they are responsible for their own misreadings and misrepresentations, not us. We need to not let their twisted, misogynist agendas control what we say. They must not stop us from speaking out.

Law & Order, “Dignity”

So, guess what I did today? I swallowed my intense dislike of popular TV crimeporn show Law & Order, and watched episode 20×05, “Dignity”, in which a bloke murders a doctor who provides abortion services, to “save” his daughter’s fetus, diagnosed prenatally with Ehlers Danlos syndrome.

Before we start, a little background on Ehlers Danlos syndrome (EDS). EDS is not one condition; it is a heterogeneous group of conditions caused by differences in genes coding for collagen proteins. Collagen is a key ingredient in all connective tissue, including skin and ligaments. The commonest EDS types manifest primarily as joint hypermobility or as very elastic skin. EDS often goes undiagnosed until adulthood, or completely undiagnosed throughout life.

There is a very, very rare variety of EDS called dermatosparaxis which involvs fragile, floppy skin and easy bruising; there have been ten published case reports of this variety worldwide. Within that group, the severity is still heterogeneous – check out this blog Sense and Disability, by a woman with dermatosparaxis who has studied at Oxford and backpacked through Europe.

Let’s have a look at the episode. I’m not going to go into a detailed recap; you can check one out here at All Things Law & Order: “Law & Order “Dignity” Recap & Review”. The case is a ripped-from-the-headlines story with many details closely resembling the terroristic murder of Dr George Tiller, one of a half-handful of late term abortion providers in the USA. The show adds a number of details that appear designed to showcase forced-birther ideas, such as the invented detail that the slain doctor had in the past murdered a live newborn. The murderer’s defence argument centres around the idea that he is trying to save a fetus from the abortion that his daughter has scheduled.

The fetus in question has apparently been diagnosed with Ehlers Danlos syndrome (EDS). At first, oddly, we’re told that it has “Fragile Skin Disease”, which typically refers to a completely different set of keratin-related conditions, epidermolysis bullosa. The show does not elaborate on how the EDS was supposedly detected (prenatal gene testing is not routine), or the fact that EDS is heterogeneous and that people with EDS vary widely in phenotype, or, well, any other facts, really. We just get this:

[clips, transcripts and a lot more discussion are below the cut]

Continue reading Law & Order: “Dignity”, Worth, and the Medical Model of Disability →

New Blog: You Make Me Feel Less Alone

activism, biography, media and pop culture, mental health

Samantha Schultz is the author of I Don’t Want to be Crazy, a free verse recounting of her struggles with her anxiety disorder. I haven’t personally read the book, but several of my friends speak highly of it and the Amazon reader reviews seem quite positive. (Although I would skip the School Library Report review, which commends Schultz for having “had the courage and wisdom to seek professional help.”)

After publishing the book, Schultz received a number of letters and emails and found that the most common sentiment was that the book had made people feel less alone in navigating their own mental illnesses. As she says, “I am honored to be your audience of one, but your story—like mine—has the power to help others.” In order to facilitate the sharing of stories and experiences from people who have a mental illness, she’s created a new blog, You Make Me Feel Less Alone,  for people to submit their stories and poems, which she will then post. There’s an option to have your submission posted anonymously as well.

As Schultz says on her blog, and as we clearly believe also, “Your words are powerful. Your words can help people.”