Category Archives: intersectionality

New book: Living the Edges: A Disabled Women’s Reader

Living the Edges book cover, with a white title on background of an abstract type painting with a road or path and floating spheres of colourHere’s a book for your list, if you’re celebrating a gifty holiday soon – or just splurge on it for yourself!

Living the Edges: A Disabled Women’s Reader, edited by Diane Driedger, was launched last week in Canada, and it should contain plenty of interest for readers of FWD/Forward.

The McNally Robinson book-launch blurb is as follows:

Diane Driedger has written extensively about the issues of women and people with disabilities over the past 30 years. Diane is an educator, administrator, activist, and researcher in the area of disabled women’s issues in Canada and internationally. She is also a visual artist and poet, and holds a Ph.D. in Education. She lives in Winnipeg.

This collection brings together the diverse voices of women with various disabilities, both physical and mental. The women speak frankly about the societal barriers they encounter in their everyday lives due to social attitudes and physical and systemic inaccessibility. They bring to light the discrimination they experience through sexism, because they are women, and through ableism, because they have disabilities. For them, the personal is definitely political.

While society traditionally views having a disability as “weakness” and that women are the “weaker” sex, this collection points to the strength, persistence, and resilience of disabled women living the edges.

A partial contents list, from Disability Research Forum reveals a whole lot of must-read articles:

“Feminism, Disability and Transcendence of the Body” by Susan Wendell

“Living on the Edges” by Charlotte Caron and Gail Christy

“Mirror Woman: Cracked Up Crazy Bitch Conja Identity” by Marie Annharte Baker;

“Margins Are Not For Cowards” by Cheryl Gibson;

“Triple Jeopardy: Native Women with Disabilities” by Doreen Demas

“Coming Out of Two Closets” by Jane Field;

“Performing My Leaky Body” by Julie Devaney

“To Be Or Not to Be? Whose Question Is It, Anyway? Two Women With Disabilities Discuss the Right To Assisted Suicide” by Tanis Doe and Barbara Ladouceu

“Living Poorly: Disabled Women on Income Support” by Sally Kimpson

“‘Have You Experienced Violence or Abuse?’: Talking With Girls and Young Women with Disabilities” by Michelle Owen

“The Geography of Oppression” by Joy Asham

There was an audio interview with Diane Driedger at CBC’s Weekend Morning Show last Sunday, in which Diane speaks of the book and of her experiences with invisible disabilities and workplace accommodations.

My transcript of the Weekend Morning Show interview, titled “Double Jeopardy”, is below the cut. All errors in transcription are mine.

Continue reading New book: Living the Edges: A Disabled Women’s Reader

For Granted

It’s odd how we sometimes take the habits of our children for granted.

I have a particularly chatty child. I can’t imagine where she gets her penchant for being a non-concise story-teller. Really. I can’t.

But when it is early in the morning and I haven’t had a chance to heave my second cup of coffee into my not-yet-awake face that adorable chattering doesn’t seem so adorable. It grates on my every nerve.

I just want to enjoy my coffee and check up on SRS Blogger BZNS in the quiet of the not-yet-awake-world. Without the repetitive chatter.

Who decided that there should be no volume control? (I really love my kid!) (I do! She’s awesome!)

However, at some point during my working day, I must have decided that not eating lunch or drinking my normal three litres of water seemed like a good idea. Sometime between picking up Kid from school, picking up last minute Thanksgiving groceries, and reassuring my mother that Korea is still outside my window I started to “green out”. I don’t know if you have ever had that experience, but I don’t ever “black out”. I get dizzy, nauseous, and my field of vision tunnels and goes green. When I was Active Duty one of my buddies who was training to go to BUD/S once told me this is a sign of dehydration, but I think it may have been a combination of things.

I couldn’t drive. I couldn’t speak, except in one or two word fragments. I managed to get out “seat…back” and “water”. I managed to communicate to The Guy that I needed water. He laid my seat back and raced back into the store to get me water while I lie there, with my hands numb, feeling trapped in my body. I could barely move, and managed to eek out a few tears as I wondered what had brought this on.

Then Kid patted my head, and instead of panicking, simply asked if I was OK. I managed “talk”, and she did. She simply did. She held my hand, and talked to me natural as could be, telling me stories about her day at school, about the green bean casserole she was going to make. She held my hand and managed to keep me calm with all of that chit-chat that my decaffeinated self can’t put up with some mornings.

As an adult when someone tells me to talk to them to distract them from something I come up with nothing. It is difficult to come up with mundane chatter. Somehow it comes so easy to a child.

Suddenly, that chatter was keeping me there. It was light, and if I had been in the position to think of it, I would have been so proud of her for staying level-headed in the situation. So I am thinking of it right now.

Finally, my water showed up, and twenty minutes later the shaking subsided, my vision cleared, and I was able to pull myself together. Magical thing now and again, water is.

It can’t be easy growing up with a parent with disabilities, because I am certain that there are times in their lives that they have to grow up faster than they would otherwise, and that there might be times that they face disappointments because of certain limitations. I know that for the most part, they grow up like most other kids, but every now and then they have to hold the hand of their parent while they are going through things (like nearly passing out).

I love her and her chatter.

Dear Imprudence — Strictly Speaking of Protocol

I think we can make this short and sweet, so let’s jump right in, shall we?

Miss Manners fields a Veterans’ Day Special from Every Military Person, Everywhere!

We members of the military would be honored if you could address military funeral etiquette for Veterans Day.

Naturally, I jest, but I do take minor exception to members of a group claiming to speak on behalf of an entire group. So, thank you, letter-writer, or representative group of military doodz.

Moving on.

For those do not know: It is not necessary for you to stand to receive the U.S. flag. We expect that you are in distress with the loss of your family member.

We are saluting our fellow service member for the last time after we give you the flag. We do not expect you to return our salute.

I’ll cut to the quick here. I hate it when military people talk down to civilians as if they can not possibly understand simple things, like funeral service protocol. But, I’ll give the benefit of the doubt here, because even as a veteran myself, sometimes I get a little confused on who expects me to salute when, etc.

Thanks for clearing that point up, if not in a slightly condescending manner.

We may be silent when you thank us. We are being silent as our fellow service member is now forever silent. Do not think we are rude for our silence; it is out of respect to our fellow service member.

We are not at the graveside of a fellow service member for you to thank us. It is a duty to serve this country that we have accepted. Just as your loved one did at sometime during their lifetime.

That’s great. Thank you for trudging yourselves out there. Hope it wasn’t too inconvenient. I happen to know that funeral detail comes with some pretty good perks and recognition along with the hard work. I imagine it is too much for this letter writer to imagine that along with being bereaved, this loved one probably gave quite a bit in service to the country as well. Just because ou didn’t put on a uniform doesn’t mean that sacrifices weren’t made, that life goals and dreams weren’t put on hold, and hours, days, months, or longer weren’t spent waiting for calls that wouldn’t come until that last one finally did. The loved one of a deceased service member deserves a little recognition and respect for the job they did in support of that service member, and most people on a funeral detail know this and can be respectful of this without sending out such a presumptuous letter.

I think that Miss Manners handled it perfectly:

GENTLE READER — Indeed, Miss Manners is grateful to be of help in this small way. She only adds that she is sure that your understanding of the emotional state of the bereaved means that you would not take amiss any such spontaneous, although unnecessary, gestures of gratitude.

The Absolutely True Diary of a Part-Time Indian: The Awkward Lines of -ist Language

[The scene sets with OYD, a slightly pale yet never-the-less still quite indigenous woman, sitting down to her trusty Macbook Pro, a laptop named “Lappy”, who has seen better days. She sets down and opens up her “drafts” tab under FWD/Forward, where she notices that egads! she has been working on this book review for over a month, and Oh my! how it must have been a long time since she has completed one. She cracks her “double jointed” knuckles like she does it too often, tucks a strand of brown hair behind her ear. She drags the review out of “drafts”, dusts it off, reaches for anything caffeinated, and begins to type.]

The Absolutely True Diary of a Part-Time Indian 1st edition cover. A black background with plastic toy figures of a cowboy and an indian, with the title and author's name in chunky green and white letters.I like media where I can consume it, enjoy it, and get a sense that I am experiencing something that touches on experiences that are my own, that seems real to me with out over-exaggerating them (mostly). I also enjoy it when certain traits about characters are touched upon as a description, as part of who that character is, but then they are not brought up as Huge Deals throughout the entirety of the book.

These are a few things that really endeared Alexie Sherman’s The Absolutely True Diary of a Part-Time Indian to me. Sherman created a protagonist “Junior”, who was born into the world with several oppressions, living on the axis of poverty, race, and disability. Within the first few pages of the book Junior gives a pretty good run down of how each of these things affects his life, and has always affected his life from the moment he was born. From never having quite enough to eat, to the way his “grease on the brain” has given him a stutter and seizures.

But that is where Alexie leaves the discussion about Junior’s disability. It is just a part of him, a description of his character. It isn’t some great obstacle he has to overcome. His disability isn’t some plot point, and it doesn’t help the other people around him become inspired about trying harder or appreciating their lives more. In fact, he goes into great detail early on, in those first few pages, to explain that the reservation kids often bully him. From an excerpt on NPR:

You wouldn’t think there is anything life threatening about speech impediments, but let me tell you, there is nothing more dangerous than being a kid with a stutter and a lisp.

A five-year-old is cute when he lisps and stutters. Heck, most of the big-time kid actors stuttered and lisped their way to stardom.

And, jeez, you’re still fairly cute when you’re a stuttering and lisping six-, seven-, and eight-year-old, but it’s all over when you turn nine and ten.

After that, your stutter and lisp turn you into a retard.

And if you’re fourteen years old, like me, and you’re still stuttering and lisping, then you become the biggest retard in the world.

Everybody on the rez calls me a retard about twice a day. They call me retard when they are pantsing me or stuffing my head in the toilet or just smacking me upside the head.

I’m not even writing down this story the way I actually talk, because I’d have to fill it with stutters and lisps, and then you’d be wondering why you’re reading a story written by such a retard.

Do you know what happens to retards on the rez?

We get beat up.

At least once a month.

Yep, I belong to the Black-Eye-of-the-Month Club.

Sure I want to go outside. Every kid wants to go outside. But it is safer to stay at home. So I mostly hang out alone in my bedroom and read books and draw cartoons.

Then, he moves leaves it there. We know he deals with these things as part of his life, but they do not define his life. Even the most horrible and hurtful parts of his life with disability are not defining his life.

Some other things that are not defined by Junior’s particular disability:

  • His grades in school — He does well in school, and this point becomes part of the main plot, so I won’t give too much away for anyone who plans to read this book.
  • His ability to participate in sports — Junior plays many sports, including contact sports. He is a good basketball player, playing on the school’s team.
  • His ability to have romantic relationships — Despite his believing how shallow it is, Junior has a girlfriend, and as it turns out, she actually likes him! Imagine that!

The other aspect of this book that I enjoyed, though I don’t expect every reader to view the same way, is that the Indian Reservation depicted has a lot of truth to it from my own experiences of having grown up on and around my own as a girl. Twenty, and even ten years ago, our reservation life was not so far off from the one described here, with the exception of perhaps the climate being slightly different, and perhaps I was too young to understand and remember anything about crime rates. But there was poverty, and then there was crushing poverty where I am from. There was alcoholism, though I would venture that perhaps it wasn’t the hot-button stereotype that I feel is portrayed at times in Alexie’s book. I don’t know. Every Native community is different, for sure, with their own unique set of problems. While I feel that there is a lot of truth to what Sherman Alexie has created, I also feel that there is a sweeping generalization. So, it hits and it misses, and I would encourage you to read it for yourself and decide what you think.

There are a lot of instances of language that I would not recommend in a progressive or social change setting going on here in this book. I see it being useful and very much achieving its purpose, for example, there is a very racist joke told by a white boy that Junior meets on his first day of school, using the “n”, which I will not repeat, but which is disparaging to Natives and Black people alike. Junior demonstrates an intolerance for it, without missing a beat, and in Junior’s point of view, the kid respects him for it. But, I have to wonder, is it because of how Junior addresses it, or because this particular student realizes that what he said was hurtful and wrong? The demonstration of how wrong racism is in YA literature is something I want to see more, but I question, sometimes, the ways in which we see it handled. There is almost no discussion or consideration of why this is wrong, just the very visceral use of very hateful words (like above, with the use of the “r” word in so casual a context). Just like using rape as a metaphor to show that a “bad” guy is bad, I don’t need to see or read -ist language for shock value to confront -isms. However, a well placed word could have the proper effect if viewed through the proper lens, but I don’t know if that is quite so obvious here. Junior simply reacts, saying he has to defend Black people, and Indians, but he doesn’t go into much else.

I will also note on the Wise White Person, or WWP, as I will. It takes a WWP living on the rez to point out all of Junior’s problems early on, and essentially Save Him! from the Rotten Destitution! Without a WWP, why poor Junior might be dead, the victim of a trailer fire started by grease from frybread, helplessly drunk and passed out.

The Absolutely True Diary of a Part-Time Indian, is an excellent book, worth reading, for many reasons, but I caution you, gentle readers, there are many themes addressed, in very direct and raw ways that I am still not sure that I wholly approve of, and yet, as a non-white, Native American, woman, with a disability, I am not fully sure that fully disapprove of all of them either.

Oh, except for the sexist language. I found no use for that at all. I found no point where that taught any lesson, except where young boys were using it to show that “Hey!  Women and girls’ bodies are weak, so calling you a woman or a girl body part means you are weak! Har har!” You get no points there, Alexie. Misogyny wins again! Whee!

Happy Veteran’s Day! You Don’t Exist!

I received a message on Facebook today (my personal account, not FWD/Forward’s account, which is not currently being updated because *ahem* Facebook seems to refuse to fix their blog importing tool and I can’t keep up with manually posting it every day…but I plan to try… /Facebookrant). It was one of those “fun meme” invitations, asking me to participate.

“Change your profile picture!” it said, “For Veteran’s Day, it would be great if we all changed our profile pictures to a picture of a veteran!”

How odd…said I. I haven’t changed my profile picture in almost a year…

It continued: “It doesn’t have to be a picture of your husband! Just any picture of anyone who has or is currently serving would be great, and a great way to honor our veterans!”

I might have just deleted it except for that last part. It doesn’t have to be a picture of your husband…

I think about how many times I would attempt to do anything official on the phone, and would asked for my husband’s social, instead of the sponsor’s (that is military speak for the military member who sponsors the dependents for benefits).

I think about how many times I would pick my kid up from daycare after PT, in my full Navy PT gear, and someone would ask me if my husband was in the Navy.

Mostly, I think about the way that the VA is still scurrying to keep up with the care that women veterans need. Some put the number from Iraq and Afghanistan alone at 200,000 active duty women, excluding National Guard and reservists. Women are left behind, with no resources, or resources scattered so far and away that they are inaccessible to those who need them most.

Which is why pieces like this one from NPR kind of really irk me, when they seem to mislead broad audiences. Somehow trying to imply that that the VA is some kind of miracle worker, reaching out to every woman veteran who is in need of services, and that they are meeting the diverse needs of women veterans. It is putting up a lovely window dressing on a filthy, dirt covered window, making sure enough of the filth is smeared out of the way so you can see a very narrowed scope of things from your apartment. The fact is they are hardly meeting the needs of their male veterans, in the ways of mental health, or meeting needs in a timely manner at all. Women veterans, however, are not having their needs met. They are missing the same marks with women, but completely whiffing on things like women-specific health, military sexual trauma, and accessible centers. We could ask Ruth Moss about all the extra ways they failed her, or the homeless women veterans with children who have no where to turn because the closest facility that can help them is a thousand miles away, and usually isn’t run by the VA anyhow.

Today I went to a Veteran’s Day Ceremony here on our base. I won’t go into details about how the President — who is here in Korea — was supposed to be there, or how they changed it at the last moment. I watched as VFW representative,s dressed in their various hats, went around and thanked the collected men in uniform in attendance. I stood there, a (friend’s) baby strapped to my chest, while my daughter, in her Brownie uniform, handed out  programs to the guests.

I was just another wife, with a gaggle of girls around me. Taking up space, snapping pictures, getting in the way. It never occurs to anyone that the passel of wives standing around may also have served a purpose in the peace that is being observed. We are unremarkable, though something to be glared at if our baby starts crying while the General is speaking.

The VA is not making progress towards addressing the needs of women. And they won’t because our society doesn’t recognize us. Women — wives — are mutually exclusive from veterans and servicemembers.

We are invisible. It’s like we don’t exist.

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Recommended Reading for 25 October 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Indigo Jo sends in two links about the same story, one from Mail Online: Joyfully kissing her beautiful baby boy – the girl branded too stupid to be a wife or mother

When she became unexpectedly pregnant they were pleased rather than concerned. They had organised a white wedding in church, bought a dress and rings, arranged the reception and were eagerly anticipating their big day.

Mark recalls: ‘We were about to go out and make a few final arrangements for our wedding when we heard a frantic rapping at the front door.

‘When we opened it, two social workers burst in and told us that the marriage was illegal because Kerry has learning difficulties. They said she did not possess the capacity to make such a decision.’

Then came the second bombshell – their baby would be removed at birth. Once again, social workers believed her learning difficulties could lead to the baby suffering ‘emotional harm’.

‘It was as if I didn’t matter as a father,’ recalls Mark.

‘By stopping our wedding, social workers had taken away my rights as the baby’s dad. The fact that I would always be there to look after Ben as well didn’t seem to make any difference.’

He now believes that Fife social services had made up their minds that Kerry would not be able to keep the baby even before they had assessed her as a parent.

Because of this, days later the couple made the heart-wrenching decision to flee the UK and go to Ireland because they believed Irish social workers would prove more sympathetic.

And also, his own take on the story: “Too stupid” family reunited in Ireland

Still, the facts as presented do raise an awful lot of concern. Kerry supposedly had mild learning difficulties, but despite having worked successfully as a childcare assistant at a local school, social workers deemed her unfit to look after her own child. They also seemed to be treating the case as if it consisted of a lone parent with intellectual disabilities, not as a committed couple in which only one party had any impairment. When they arrived in Ireland and Kerry gave birth, social services removed the baby and reunited only Kerry with Ben two weeks later, expecting her to prove herself to them on her own, rather than as she would be living, with her partner. Of course, there would be times when she would be left alone with the baby, but these would not be all the time when her husband was not around, as she would likely have friends with their own babies who would be able to give her some support.

Walking is Overrated: Government bullying must stop

I’ll say it again: everyone does it. Disability support funding is limited, and the constraints around it are incredibly restrictive. For many parents of children with significant disabilities, it means they are unable to work, as they spend most of their time supporting their kid. Of course they’re going to attempt to get a small amount of compensation for this work – in this case, $40,000 over 8 years, of money that they were entitled to anyway. Yet the Ministry sees fit to chase them down and slam them with 5 months home detention.

The Guardian: The new anorexics: big increase in eating disorders among women over 30

Dr Adrienne Key, the lead clinician for eating disorders treatment at the Priory clinic in Roehampton, south-west London, said: “In the last 18 months I’ve seen 10 women in their mid to late-30s, mainly with bulimia, who have had a baby in the previous few years and have had increased body dissatisfaction. They start dieting but then try more drastic measures such as skipping meals or going on these strange protein, no-carbs diets, and then their starvation triggers the biology of an eating disorder.”

msnbc.com: Minorities get less treatment for their pain

A recent study by Green of 200 chronic pain patients in the University of Michigan health system found that black patients were prescribed fewer pain medications than whites and that women were given weaker pain medications than men were given. The research published in the Journal of Pain showed that, on average, a minority pain patient would be prescribed 1.8 pain medications compared to 2.6 drugs for non-minority sufferers.

OHS Canada: Employers may be legally on the hook for mental injury

Kathy Jurgens, program manager for Mental Health Works, a corporate training program offered by the Canadian Mental Health Association in Toronto, says that a changing view of the workplace is allowing the concept of psychological safety to take hold.

“If you think of the younger generation, they have different expectations of what work means to them and what they’re willing to engage in for a paycheque,” she points out, adding that younger workers are less likely to accept a workplace that expects chronic overtime and unreasonable demands. “I think it’s long overdue,” Jurgens says of the current approach to psychological safety, suggesting that mental injury in the workplace has been a problem for hundreds of years.

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.

Someone Get This Rock Off Of My Chest…

I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.

Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication.  Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.

We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.

These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything  or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?

Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?

How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?

Further Conversations On Body Image: Examining Health at Every Size (HAES)

Health at every size is a concept embraced by some fat and size acceptance activists. For those not familiar with it, it was developed popularised (see comments) by Linda Bacon, and simply put, it suggests that there’s a wide variation of bodies and that people should focus on what makes their bodies healthy, rather than on eating and exercising for weight control. There are a number of components of health at every size, including ‘intuitive eating’ and the concept of ‘joyful movement.’

When I initially heard about HAES back in my nascent days of exploring fat, size, and my relationship with my own body, I was excited about it. I’d been reading a lot of stories about the false beliefs about fat and health, and I liked the idea of a movement specifically reinforcing the idea that being fat doesn’t make you unhealthy, since one of the most common charges levied against us fat folks is that we are unhealthy because we are fat, that fat makes people unhealthy.

But then I got sick. Very, very sick. And I lost a lot of weight, and people praised me for it, and I started thinking about the dichotomies being set up with health at every size, and who was being left out of this equation: People who are unhealthy. Many people are unhealthy and also fat, many people are fat and disabled, and the framing of health at every size excludes them.

It’s hard to eat intuitively when you have allergies, or when you have conditions that require you to be very careful about what you eat for other reasons. When you’ve got to plan out your meals and you can’t afford to be ‘intuitive,’ to decide to skip a meal when you don’t feel like eating. It’s hard to eat intuitively also when you have limited energy for cooking and you might not be able to eat when you want, when you want. Or when you’re so sick that the thought of eating at all is nauseating.

As for ‘joyful exercise,’ well, not all bodies want to  move, and not all bodies move joyfully. I know that I personally tend to feel better, emotionally, when I do yoga regularly. Which is great, for me. But I’m not going to tell other people to do yoga; some people find the poses difficult to hold or the experience uncomfortable or just plain don’t like it. For people who like to move and want to move, finding the ways that their bodies move comfortably and joyfully is awesome, but not everyone wants that, and not everyone can reach that. Should someone who can’t exercise be drummed out of the fat acceptance movement?

I want to be clear that not all fat/size activists embrace this concept, and that some of those who do think of it as a framework that works for some people, and not for others, that people need to navigate their own relationships with their bodies rather than being forced to think about them in a particular way, acknowledging the variation of human experience and emphasising the fact that people should not be told how to feel about their bodies. But, for those who accept it as a blanket, one size fits all (so to speak) philosophy, there tends to be an erasure of people with disabilities from the size acceptance movement; we’re not healthy, so right there, we’ve gone and shot a big hole in health at every size, no matter why we are unhealthy, no matter what the intersections (or lack thereof) between our health and weight may be.

Which is unfortunate, because size acceptance needs to work for us, too. Many of the FWD contributors, just for example, are fat to varying degrees, and I know we have a lot of fat readers. Our fat bodies need to be accepted and embraced too and we need to be able to talk about our relationships with our bodies; how, for example, people with poor thermoregulation experience chub rub on a whole new and very uncomfortable level. We need to talk about what it’s like to not be healthy at every size.

I’m not advocating for throwing out HAES. There are a lot of people who clearly benefit a lot from this model and for whom it has played an important role in thinking about their bodies and their relationship with the world. But we also need to find a way to create a space for discussions about fat and disability, for what it’s like to be happy and fat, happy and disabled, sad and fat, sad and disabled.

Hardline HAES advocacy plays directly into the good fatty/bad fatty dichotomy that looms so large in the minds of many of us. The stereotypes about ‘lazy fatties’ take on a new dimension when they are weaponised against people with disabilities who need to use mobility aids, who can’t hop off the couch and start cycling for fun, who experience feelings of guilt and inadequacy about being unable (or unwilling!) to exercise.

A huge part of fat acceptance is the idea that there are no ‘perfect’ bodies and that bodies naturally come in a wide range of sizes, colours, shapes. But bodies also naturally come in a wide range of degrees of disability and health, and that intersects directly with fatness, with social attitudes, with acceptance of the body.

Michelle at The Fat Nutritionist has written about the concept of being obligated to be healthy, pushing back against certain aspects of the HAES narrative:

It is sad that this even needs to be said, but given the fact that we essentially live in a health meritocracy, let me be the first to announce:

You are under no obligation to be healthy.

And, as an addendum: even if you were, eating “well” and exercising wouldn’t guarantee your success. There. I’ve said it. And as much as this might chap the ass of every health promoter out there, I feel that personal agency and a basic sense of privacy are sorely missing from most conversations of health promotion, and from conversations of Health at Every Size.

I’d recommend reading her whole post, as she talks about issues like varying definitions of ‘health’ and the pressure on members of society to be healthy, and poke around her blog a bit if you haven’t already, because this is not her only piece on the obligation to be healthy. Michelle’s work has done a lot for me personally in terms of reframing the way I think about fat and health, and I’m really excited that she’s tried to start a conversation about fat, health, and the shortcomings of HAES; let’s try to keep that conversation going.