Category Archives: introspective

What a Lovely Surprise

14 July, 2010happy posts, identity, introspective, make the world a better placegood thingsabby jean

I was recently reminded of the importance of noticing, appreciating, and celebrating “good disability moments” – those times when someone responds to me or treats me in a non-ableist way. This is more than the lack of discrimination or oppression, this is someone treating me as I want to be treated. Although these moments aren’t as routine as I would like them to be, they certainly come along, and I think it’s important to remind myself that not everyone will respond to my disability negatively or with fear or anger. Another side benefit is demonstrating how easy it is for people to act with compassion and caring on disability issues.

I read a post at Rolling Around that highlighted a recent “good moment”:

A Wheel-trans driver just came to pick up one of our members (a bit late, but understandable). While loading the member onto the bus, this driver took the opportunity to have a conversation with our member (she didn’t even realize that I was there). This member has a profound disability, he’s also blind and can’t answer back verbally. She spoke to him with kindness throughout the loading procedure, reassuring him he was going home, letting him know what she was doing and she was joking around with him. This driver has a huge heart and smile and made sure that no matter how stressed she was feeling due to traffic, she didn’t let that ruin someone else’s day. Too often people with disabilities are passed off and are not seen as “normal human beings” that have emotions and feelings. It’s a wonderful thing to see it when someone takes time out of their day to talk to members, be friendly, maintain professionalism and make someone smile with such a simple act of kindness.

I recently had a “good moment” of my own. I was at work, eating lunch with a few of my co-worker friends, people who know my disability status and whom I trust enough to feel comfortable discussing my disability issues. I mentioned how I had seen a lot of recent articles about lithium mining, spurred by the recent discovery of huge lithium deposits in Afghanistan, which prompted lots of articles analyzing lithium mining industries in Bolivia, and so on. I laughed that every time I see one of these articles, I have to consciously remind myself that the lithium they’re getting is to use in electronics and industry and that it isn’t being mined for pharmaceutical reasons. Partway through the story, I realized that one of my newer co-workers was sitting with us and remembered that I had not discussed my disability status with her, so continuing my story would basically be outing myself to her, but I was so far into it I couldn’t stop without also calling attention to my disability status. So I plunged ahead, saying that my reaction to those headlines is always to think “I don’t need that many pills! You all can stop mining the stuff now! I’m all set! Thanks!”

New co-worker laughed at the punchline and then the conversation moved on to other things. She didn’t stop the conversation to say, “wait, you’re on lithium? Isn’t that for crazy people?” or any other questions. She didn’t ask me what I take it for. She didn’t ask me anything, in fact, but continued to chat and laugh with me and the others with absolutely no change or shift at all. Since then, she’s continued to treat me exactly the same as before – griping about World Cup officiating, wondering if the A/C in our office will ever work reliably – and hasn’t mentioned or questioned my disability issues at all.

It is difficult to say how much this means to me. The ability to talk about myself, to share those jokes, without encountering negativity, curiosity, or even stares, made me feel like my disability did not set me apart from the group. That mentioning my medication in that context was equally mundane and non-notable as mentioning I have a cat, or drive a Honda, or don’t like beets. It was the feeling of acceptance. Of equality. And it was amazing.

What Does it Mean to Get Better?

12 July, 2010autonomy, identity, introspectivegetting betterabby jean

A few weeks ago, I read an absolutely marvelous post by Wheelchair Dancer, a letter to a TAB friend explaining why her approach to recovery and improvement was so different than theirs. It stemmed from an incident where the friend was “enthusiastic about how much better I seemed” and Wheelchair Dancer was unable to respond in the same way as her friend. She talks about how her improvements are not permanent, how she lives “in a cycle of event, recovery, plateau, and event. Sometimes, the recovery is actually an ‘advance or an improvement.’ But often, I struggle to get back where I was before. So, I don’t attach any great meaning or significance to recovery. I simply can’t.”

She talks about how she works on her body not because she is intent on achieving a cure or focused on “recovery,” but “because it give me great pleasure to do so. I am so excited to see what it can do, to push it to its limits.” And how that work is not part of a drive “to work for total healing and cure because I have come to understand a different politics of the body, one in which there is neither cure nor giving up.”

I have been sitting with this since I read the post, and I believe these ideas have immense power for me. While my illness is of the mind, not the body, I think the idea of defining for myself what “getting better” means, what goals I am trying to achieve with my treatment and medications, how I understand my own cycles of event, recovery, plateau, and event, is crucial to reclaiming my agency.

When I first got sick, I had a very different idea of what getting better meant. I was so overwhelmed with suicidality and self-harm that my idea of ‘better’ was any situation in which I felt in control of whether or not I was going to harm myself seriously. I didn’t feel safe in my own presence – I relied on watchers, babysitters, overseers – and wanted nothing that to be able to be with myself without fear. Once I achieved that (thanks, Effexor!), my next idea of getting better was to get rid of the tension and energy that would overwhelm my body periodically, forcing me to pace the halls, back and forth, back and forth, for hours on end, even while my body groaned with exhaustion.

A few years later, my conception of getting better had shifted completely. In my mind, getting better would mean I didn’t have to take those hateful pills every single day, would cut the tether between me and that prescription bottle. It would mean I didn’t have to have yet another first appointment with a psychiatrist where I rattled off my litany of trauma and despair. It would mean I never again worried about what thoughts would come to mind if i saw an x-acto knife or a pack of razor blades. It would mean I could put it all away, be cured, be sane, be normal, be like everyone else.

Pursuing that idea of getting better caused me significant harm. (In short: taking myself off all my meds all at once with no psychiatric supervision and dropping all therapy and counseling while moving across the country to a place where I had virtually no support system turned out not to be the best thing for me, and it took me about a year to pull out of the hole I dug for myself.) That idea of getting better was incompatible with my first conception of improvement – not being constantly buffeted by the desire to die and the periodic storms of energy that made me feel like a puppet dancing on the end of a string controlled by someone else. And when it comes down to prioritizing conceptions of improvement, I will always pick “not dead.”

Today, my idea of getting better has evolved significantly. It has nothing to do with taking pills or not taking pills, it does not insist on or exclude any methods of treatment. It is focused instead on me – can I do the things I want to do? Do I feel safe? And it relies on some things I’ve observed about myself and my friends with disabilities and the qualities that make me feel confident about our abilities to weather crisis events, to come through the other side and keep moving through that cycle of event, recovery, plateau, and event. There are three qualities I think are essential: 1) the ability to know myself and my illness well enough that I know when things are starting to go wrong, when crisis is approaching, 2) knowing what things can help ameliorate or prevent crisis for me personally, and 3) being able to ask for help and having meaningful help available. With those things, I know I can move through the cycle of crisis. It does not mean I can avoid crisis – I no longer think avoiding crisis is an essential component of “getting better.” I now think my ability to survivie crisis and move through it and beyond it is what it means to get better.

Which means, of course, that I am better. I’ve done it. I’ve achieved my vision. And that is worth more to me than I can ever say. And that is the power of taking agency over these ideas, of defining the term for myself. (And only for myself – I do not believe I have the ability or right to define what ‘getting better’ means for anyone else.)

(Again, thanks to Wheelchair Dancer for such an amazing post on this, which I recommend you click through to read in its entirety.)

Avoidance

17 June, 2010activism, disability activism, domestic violence, For Cereal?, identity, intersectionality, introspective, invisibility, mental healthargh, grrabby jean

Building on what Chally talked about in her post about doing fine, I wanted to discuss some of the disability aspects of my recent semi-absence. Sometimes I feel like thinking about, reading about, writing about, arguing about, disability issues can become overwhelming for me. I feel that there are so many problems – ableist policies and laws and governments and businesses and people and attitudes and media portrayals and interactions and opinions and splainers. And a horrifyingly large number of instances of people with disabilities being abused and battered and humiliated and ignored and erased and dismissed. Each of those things seems like an immovable stone that fit together to form a wall that is beyond insurmountable.

Even thinking about everything that’s overwhelming feels overwhelming. (And this, of course, is part of the effect of the kyriarchy – to be so overwhelming and monolithic that it forces conformity, punishes people for differences like being a PWD, and places immense pressure on them to conform as much as possible to the norm.)

So when this happens, I notice myself avoiding disability related topics. I keep posts on disability issues unread until they start building up in Google Reader. I somehow don’t get around to reading that article or book on disability activism I had bookmarked. Someone I’m around in a casual setting says the R word and I let it go by. I pass as much as possible for TAB and neurotypical – even to myself. I just ignore disability – in general and mine specifically – as much as possible.

I noticed that my avoidance started right around the time I started working on a work project related to domestic violence. Working in that area always makes me aware of how many people, predominately women, are subjected to horrifying abuse on a daily basis. In the past, I’ve had the same kind of overwhelmed/avoidance response to feminist issues, when it feels that the patriarchal structure is too entrenched and too powerful to fight.

In other words, feeling vulnerable about domestic violence and sexual assault makes me feel like I cannot risk being vulnerable about disability, so I try as hard as possible to ignore it. I know that I am doing this to protect myself. But I do not like that protecting myself means ignoring disability issues or feminism. That protecting myself means, to an extent, ignoring part of who I am. Not just in the way I present myself to the world, but even in how I think about myself in the privacy of my own head.

That makes me angry. It makes me angry that retreating into my shell is coping mechanism brought on by the infinitely-headed hydra of ableism and sexism. It makes me angry that a necessary reaction to the frustration of engaging in disability activism is to take a break from that activism and to momentarily stop identifying as a PWD. (Or as a DV survivor. Or as whatever else is making me a target for kyriarchical oppression.) Basically, I get angry that the kyriarchy works, that even my efforts to stop being hurt by it are intrinsically shaped by it. That my life is inherently a response to it. That I cannot seem to exist outside of it.

Fucking kyriarchy.

Why My Disability Makes Me a Better Employee

10 June, 2010identity, introspective, mental health, workadvantages, anxietyabby jean

As people may have noticed, I’ve been a bit quiet lately, mainly due to being totally snowed in and overwhelmed at work. I’ve had a major project with a hard deadline and have been devoting nearly every waking moment to either working about it or just worrying about it. That worry and constant fretting is directly related to some of my anxiety issues – it’s a worry I feel both mentally and physically, with tensed muscles and clenched stomach and jitters. And I’m convinced that anxiety helps make me a better employee and better at my job.

I am a lawyer and my major project was a hearing with an administrative law judge to determine whether one of my clients will be considered disabled by the Social Security Administration and thus eligible for cash benefits and medical coverage. Our office had been working on this case since his initial application for benefits in 2006 and in the interim, I’d seen him struggle to avoid homelessness while his income disappeared and his medical condition deteriorated without access to effective medical treatment. So this case was an extremely big deal and the outcome would make an enormous difference in the course of his life from this point.

No pressure, right? And it didn’t help that it was an extremely complicated case involving about 15 years of medical records from 10 different medical providers and facilities about three or four distinguishable medical conditions. And that, although his disabilities have extremely serious effects, they were the kind of disabilities that Social Security usually has a hard time understanding and so tend to lead to findings that the individual is not disabled. So – a major case with a lot of difficult work for an extremely important outcome. And the short time between when we were notified of the hearing date and the actual date meant that to succeed, I would need to spend nearly every waking minute in between working on the case.

Which is when my anxiety kicked into high gear – and actually made that possible. I spent all my time in the office reviewing records, teaching myself relevant medical terms and context, and coming up with an overarching narrative to frame the disabilities. But when I would close the file and go home at the end of the day, my anxiety would not let me stop thinking about it. While I was driving, making dinner, in the shower, at the gym, my mind was constantly spinning, either worrying over some aspect of the case or making a list of my next steps when I got back to work. I was not only waking up in the middle of the night to spend some time thinking about the case while staring at the ceiling, I was dreaming about it.

When I’m that anxious about a specific topic or issue, I think of my brain kind of like a rock polisher – it takes a dull idea or problem, with jagged edges, and rolls it over and over and over (and over) again until the edges are worn down and the surface is polished to a brilliant finish that can be appreciated by even the most casual observer. But the end product wouldn’t be the same without the constant, unceasing motion and effort. If the motion, the tumbling, stopped for stretches of time, the end result would not be as smooth, as shiny, as easily appreciated.

My anxiety makes it impossible for me to slack off while working on such a major project. Even when I try – by watching tv, reading a book, talking to my cat – there’s a portion of my brain that keeps spinning and spinning away, and my whole body is ordering me to pay attention to that part of my brain. Yoga wouldn’t help, hot baths didn’t work, even a hard session on the treadmill just made me more tense. The only thing that would reduce the anxiety was making some progress on the case.

I think that drive makes me a better employee and results in better and more persuasive case work. I certainly know that I would love to take breaks and put work out of my mind and to not dream about it every night. But I don’t think the end product would be as good if I were able to do that. So my employer never needs to worry about me blowing off a case or putting less that my full effort into it, because of the anxiety that will not permit me to do anything less.

(By the way, we won the case and my client will get his benefits. Yay!)

There are definitely other aspects of my disability that either aren’t relevant to or actually make it more difficult to do my work, and I don’t want to imply that everyone who is a lawyer should have anxiety to make them more effective. But this particular aspect of my disability definitely enhances my ability to focus and concentrate and motivates me to put in lots of time and thought, which is an advantage for my job.

Are there aspects of your disability that enhance ro amplify your abilities in certain areas?

It’s Always More Complicated: The “Justified” Abortion

28 May, 2010activism, feminism, intersectionality, introspective, invisibility, language, reproductive justice, resistance, shaming, social attitudesAnna

[Trigger warning for “disabled child = burden” narrative.]

Last night I was reading several pro-choice tumblrs, one of which had linked to “The Choice“.

What makes us human? When is a life worth living? Worth ending? How much suffering is bearable? Is avoiding suffering brave or is it cowardice? When is abortion justified?

Should Fred be born, my wife would never return to work. My daughters would always come second. Some basic research online and asking friends in health roles showed a high chance of divorce before my son was a teenager, the stress of care literally tearing our family apart. Every news article we read showed little or no government support, with charities closing their doors. The doctors were encouraging about support; the real life carers we spoke to, not so much.

I’d never support killing a born child on any grounds. Yet here I was, suggesting death for a child almost born. I may not be a good man, but I’m a husband and a father. Had we not known, I’d be living with Fred’s condition today; but we take the tests so we can act on the information received.

So, let a bad man say the words that will condemn me: Fred’s life would have been less than human. It would have been filled with love, yes, but mostly loneliness, confusion, pain and frustration. The risk to my marriage and the welfare of my daughters was too much. I chose to minimise suffering. For my wife, for my daughters, for myself and most of all for Fred, I chose abortion. It was a choice of love.

I have complex reactions to this that are not really easy to talk about, but the one thing I do want to make clear:

Abortions do not need to be justified.

I know there are strong political and advocacy reasons why stories like these – the so-called “justified” abortion – are told whenever people talk about abortion and the law. They are “good” abortion stories, with the happy family, the desperately wanted child, the “horrors” for everyone had the abortion not been performed.

I struggle with these sorts of stories because I don’t know a way to talk about them. I want to talk about the way that disability is discussed in them – always, always, as horrible, as tearing families apart. And yet, these are people’s lives. I don’t think in any way they made a “wrong” or “bad” choice, or a “brave” one, either. They made the “right” choice, in that it was the “right” choice for their family, and I fear that talking about the language used is abusive. You’ve shared your painful story, your very personal story, and I want to now talk about disability and how it’s used to score points in the so-called abortion debate.

And yet, I desperately do.

I deeply resent the way anti-choice advocates point at people with disabilities and talk about how they’ll all be eliminated if we allow abortion-on-demand. The sheer amount of hate directed at Don when he goes to pro-choice rallies by the anti-choice contingent, because they see him as a traitor to their cause, is amazing to me.[1. Of course, they direct more at any pregnant pro-choice women – there’s a video clip from Toronto last year with someone telling a pregnant woman “I hope your child kills you”.]

I don’t see these same people at protests and demonstrations about making Halifax an accessible city. I don’t see them at demonstrations about improving health care options. I don’t see them doing anything for people with disabilities except using them as pawns, and I loathe them for it.

And yet, many pro-choice advocates also use people with disabilities as pawns in these so-called debates. They hold up stories of fetal abnormalities as “justified abortion”, as the acceptable test-case, the one they know the general public is likely to agree with. I see no analysis, no discussion, of the ableist nature of this narrative. It’s an acceptable justified abortion because the fetus was abnormal, and who wants a broken child that’s going to ruin everyone’s life?

All abortions are justified.

It troubles me so much that it’s only the “abnormal” fetuses that are okay to use as abortion stories.

[Originally published on my tumblr]

[Note: Things we are not going to do in this thread: Debate whether or not abortion is “okay”. Publish shaming comments towards women who have abortions. Talk about people with disabilities as burdens. Discuss individual actions as though they occur in a complete vacuum and are not influenced by societal attitudes and pressures.]

Why History?

27 May, 2010activism, anna history rants, disability activism, history, introspective, small stories, social attitudesAnna

The committee approved my thesis proposal (and I passed my French Proficiency Exam – necessary for Canadianists) and thus I’m now at the stage of my MA where I’m researching, reading secondary sources, and writing stuff up.

[When I lay it out like that it looks so sad and boring. This is the bit where I get to do what I want, in the archives! Looking at letters and school records! I get to apply theories and see if they work, and maybe even develop my own! This is totally my idea of how to have a fun summer! Also, the archives are air-conditioned, which helps.]

My particular project is focusing on the development of residential schools for blind and deaf children and youths. I’m looking at how and why they were founded, what their teaching methods were, and who they hired to work there. I’m also looking at the types of jobs that these children were trained for, and what that says about the way disabled children were perceived by society at large in Nineteenth Century Canada.

I’m also wondering exactly how many blind piano tuners and deaf printing-press operators the province of Nova Scotia thought it could support.

I’ve written before that the history I do is explicitly political. It’s partly about a part of our past that is highly neglected, and partly about arguing, simply by doing it, that this history is important, that it has long-term consequences that we’re still feeling.

But I also write it because people with disabilities have a past, a present, and a future. Because we’re important enough that having a history that’s not just focused on a few Great Examples – Helen Keller, Louise Braille, Beethoven, Terry Fox – isn’t enough. Because knowing how things turned out in the past might give us some insight into how things might be in the future.

Another reason I’m doing this is because it challenges people, and asks them to think.

Every time I tell people I’m doing disability history, “centering the experiences of people with disabilities in the historic narrative”, they are taken aback. They’re surprised. Just by doing history in my department, and telling people how awesome my research is, I’m making more of them think about disability, and about people with disabilities. Without ever having a conversation about language, people in my department have stopped referring to people doing unthinkable things as “mentally insane”. Without my ever leading a classroom discussion about theory and frameworks, my classmates discussed the assumptions about disability presented in several of the readings we did.

These are small things. If I’m lucky, I’ve made 30 to 40 people reconsider their ideas of disability and think about people with disabilities in the past.

And yet, these small things are so satisfying.

How Many Straws?

27 May, 2010bodies, introspective, life changes, militarychronic illness, chronic pain conditions, disability, drugs are bad mmm'kay, fibromyalgia, health care, invisible disabilities, military, personal, self-acceptance, when does it stop?Ouyang Dan

I know that I am not 18 any more.

One of my doctors kindly pointed that out to me recently.

What I mean is that I can no longer demand of my body what I once did. And I know this, as I embrace the things that come with years gone by. Aging is a complicated issue for me, emotionally charged and not something I am willing to discuss right now, but it is important to note that this post is not about aging. It is, however, about the way my body has worn down due to my disability.

When I was 18 I drilled endlessly on the U.S. style football fields, with the careful precision that four years of training an 8-to-5 step — that being my ability to march exactly eight steps in five yards to whatever beat you set for me — will ingrain into a person. I was able (and expected) to teach others under me to do the same all while playing the horn. To this day I can not hear most music without at least tapping my foot. Emerson, Lake, & Palmer’s “Karn Evil 9” will actually cause me to hum along wistfully. Later I did the same at University. Anyone who participated in University Marching Band at Eastern Michigan University can tell you that marching band was not something you just did, but rather worded at, and I worked hard. Hauling that tuba around during pregame was no easy feat. There was a reason music majors received PE credit for marching band.

Before I was diagnosed I was a runner. When I was 18 I had pounded out miles on the track and on mapped out road routes in order to get into the condition I needed to race for years. I was able to sprint out the eleven or thirteen steps, whichever felt right, to take me to the high jump pit and sail over the bar. I wasn’t amazing, but I had determination to demand it from myself. I ran in high school, and I hated it. I loathed it. I had clever names for the malevolent task-masters whom I called Coaches that I went to voluntarily every day after school and asked for work out schedules and whose hands I shook afterwards.

I ran before, during and after my pregnancy (when I wasn’t throwing up), cussing myself out the whole time. I ran in Navy boot camp, filling myself with the urge and the desire to do well. I hated every moment, but loved the feeling of feet on pavement even as my shins cried out in pain. I filled myself with the desire to go one step further, two, one mile, two, as I shoved tears out of me to replace the pain that filled my body (and I usually peed my pants a little at some point, but that is another story).

Eventually the shin pain became a lot worse. It was massive, and no amount of ice or ibuprofin was going to alleviate it. A bone scan later and some Tolkein-esque blathering you don’t care about and I am told I can never run again. Sure, the Navy loved that. I couldn’t get a chit to back it up w/o getting kicked out earlier than I already did, so I had to go back every 45 days or so to get a new one, and I had to be very sure it was a nice sailor-doctor who signed it, because the Fitness Enhancement people were not going to take anything signed by anyone who was a civilian or any other branch of the military regardless of what degrees they had on the wall. So, running was right out, and they weren’t making it easy for me to, well, take care of me.

I became a swimmer, and I was fantastic at it. I probably knew this deep down, having been a natural swimmer since before I could walk. Had anyone told me that I could swim as an option to running in the Navy sooner I would have. I swam thousands of meters a day, until I was exhausted (trying not to notice that my body was telling me this was sooner and sooner each day). I would do kick turns through migraines that were getting more and more fierce despite the amount of over-the-counter meds I was pounding. Go figure. My Fitness Test scores went from Good/Low to Excellent/High.

Until my abdominal muscles gave out.

I finally pulled something doing sit-ups. I went from doing in the high 60’s to barely being able to do the 35 that was required to pass for my age group pretty much overnight. I would get to 15 and the pain would make me yell out it was so sharp. I could almost clock it, too. Of course sit-ups were always first, and this made push-ups impossible. I couldn’t even do the simple 15 I needed to pass. My doctor felt around, and determined that core exercises were out for fitness tests. I was to do them only at my own pace or with a doctor in physical therapy.

Finally the headaches were bad enough that it was too much and my swimming was scaled back. My exercise was restricted so much that I was barely allowed to do 30 minutes a day. I was still not receiving any pain medication other than anti-depressants, which were not working for me. I started seeing a chiropractor, and doing yoga, which I was told was not a “real” workout, but would count for my weekly number of workouts anyway. Even then I couldn’t do a full class because I was in too much pain.

Still, as I gained weight, cornered in by pain and now stuck in a body that wasn’t allowed to move anymore, my new doctors (because they were always changing) said that I just needed to lose weight, if only I would watch my diet and include more exercise into my daily routine, which by now was only limited to half days of work due to pain and 15 minutes of exercise by my chiropractor and PCM, and Hey! How about seeing a dietician?

After my discharge, when my second career choice was unceremoniously ended with me handing over my ID card, I finally settled into a place where I stopped hating my body so much (OK, you got me, I’m still working on it). I am finally on a pain management regimen, I do light exercise as the pain permits, and my body is stable at a weight that hasn’t fluxed one way or the other for a few years now. I had to give some things up (drinking alcohol any more than a few sips being the one that comes to mind mostly) because of those medications. But all of this aside, I have tried to take care of myself. I have followed what doctors have told me to do, I didn’t smoke, I tried to eat right, I wore sunscreen…I even eat very little meat, having been an on again/off again vegetarian. I know that these are not hard and fast actual things that guarantee health, they are just things that I have always followed because some doctor or dietician or another has advised me blah blibitty blah… What I mean is that I have very few of what people generally consider vices.

Recently I had some issues where I have been vomiting in my mouth, acid reflux, heart burn, all kinds of fun stuff. They gave me a nice, handy laundry list of things I need to give up in order to help alleviate the symptoms now that they have prodded around my duodendum with a camera.

Things like coffee, and chocolate, and anything spicy (or tomato-based in general), which are three of my favorite things. All citrus foods are right out, which I expected, but they snuck in things that surprised me, like mint and mint flavoured things, which took half of my herbal teas out as well. Finally, I find myself with no vices if I am to follow all of the doctorly advice to maintaining my health.

Let me tell you that I have not been a pleasant person to be around lately. I depend on that Super Human tolerance for things like caffeine and chocolate (sometimes at the same time!) to fuel things like my snark and ability to write 2,000+ word blogs posts. I have sustained myself on coffee and little else at times. It is often the centerpiece of friendly chats and family gatherings.

It leaves me to wonder, how many straws do we lose before we say “that’s the last one? I can’t take any more!”?

What lines do we draw when we get all of that medical advice, when things that we enjoy or that we once did have been stripped away from us one by one, to balance a quality of life for ourselves so we don’t sit around stewing about what we can or can’t do anymore, and to make sure that we do actually pay attention to the call of our bodies as they try to tell us something (if they do send us signals at all)? Where do we draw the lines between telling our bodies to piss off because we need that comfort, that thing that helps us get through the day when we feel like everything else has been taken from us?

Or am I making mountains out of molehills here?

Photo credit: ashleigh290

Food.

29 April, 2010bodies, class issues, introspective, life changes, politicsAnna

Earlier this week, Don started his “low-iodine diet” in preparation for exciting radioactive iodine therapy next month. He tells me he’s not allowed to eat milk or milk-products, soy or soy-based products, egg yolks, anything from the sea, iodized table salt, and all restaurant foods.

Food restrictions are pretty common for people with disabilities. A friend of mine discovered her chronic pain and fatigue was influenced, at least in part, by her wheat allergy, and described at length to me the perils of “hidden wheat” in things like Twizzlers, which is a brand of red liquorish available in North America. Another gets flair-ups if she thinks about stepping away from her gluten-free diet. Some people have serious allergies to corn, and must avoid any and all things with corn and high-fructose corn syrup. There are very specific diets required for people on certain types of medications, with certain types of short-term and long-term medical conditions, people with diabetes, and people preparing for types of surgeries. Many people recovering from Cancer treatments, surgery, or eating disorders, as well as people on certain types of medications that cause dramatic weight loss, are pushed (or required) to consume those “nutritional shakes” or other forms of meal replacements.

You know what’s fun for most of the above?

How incredibly expensive all of this stuff is.

So, let me go back to Don. Right now, all of Don’s favourite foods, and everything we’ve had stocked in the freezer, are off-limits. He tried to pick up rice milk so he could have some cereal, but surprise! Most rice milk in Canada is made with salt, except a very specific (expensive) brand that isn’t sold at our grocery store. So, either we need to go to the more expensive store downtown, I need to make rice milk (I have a recipe), or he needs to not have milk with his cereal for the next two weeks. We can’t find any bread we can guarantee is made without salt, so either he goes without bread at all, or someone makes him special salt-free bread. Today, while I was away, I think he ate some special, expensive, peanut-only peanut butter and salt-free rice cakes.

Because I’ve been busier than anyone probably should be, we’ve mostly been relying on very cheap, easy-prep frozen meals that are basically salt with food in between. I’m no less busy, but now Don needs to be eating so-called “real” foods that are time-consuming to prepare, and often very expensive to purchase, especially in comparison to how we normally do the food-thing.

If you’re not on a restricted diet, I recommend checking out some of the “special” foods that people on restricted diets need to purchase. See how expensive gluten-free foods are. Compare prices of cow milk, soy milk, rice milk, and nut milk. See how many things have “corn” in the ingredients list, and try and sort out how expensive it would be to try and eat nothing with corn in it, while still eating enough. Look at some of the stuff on the shelf and try and sort out what has “hidden” wheat in it.

The cost of these items is especially relevant because so many people with disabilities live near, at, or below the poverty line for their respective countries. Don and I are able to afford to spend extra money on this restricted diet because of family support, but this isn’t an option for very many people. If you do not have a restricted diet, imagine trying to afford the foods that allow you to eat without causing flare-ups in your chronic pain condition.

Imagine as well – and this, of course, applies even when one doesn’t have restricted diets – trying to put the energy and time into preparing these foods when dealing with second shift for the sick. Imagine trying to balance it all while some stranger tells you that your, or your kid’s, disability can be magically cured if you put your family on a special, expensive, restrictive, time-consuming diet.

Don and I are incredibly privileged in this. I can take the time and make him rice milk so he doesn’t have to eat dry cereal, and we can afford to run out to the store and buy those pricey egg-whites in a carton things. And this is a restricted diet he needs to be on for a little over two weeks, and then it’s done. So many people with disabilities do not have these options. It’s eat stuff that makes you sick, or don’t eat enough at all.

I wish I had some solution I could offer to this problem, some nice little bow of hope I could tie this post up with. All I have is the knowledge that these restrictive diets aren’t things people are on for fun, but because the alternatives for them are sickness or pain. And yet, the foods people are required to eat are priced like they’re luxuries.

When Accommodations Conflict (Continued)

27 April, 2010accessibility, bodies, feminism, introspectiveaccommodations, barriers to access, conflicting needs, drugs are bad mmm'kay, family, health care, pain management, personalOuyang Dan

Reflecting on the extremely thought provoking post by abbyjean earlier, I was walking to breakfast with The Guy (caution, try not to walk while lost in thought, OYD) on a day when I was low on sleep, high on pain, and therefore using my cane. (edit: I just saw my typo! I had a funny visual of me trying to balance on a can! HA!)

Conflicting accommodations do not always mean that the conflict will occur between separate PWDs. For example, on a high pain day, I am in desperate need on my cane due to the intense pain in my hip and legs in general (though, which leg I want to use if for is debatable, even though I favor one hip). When I am that fatigued, however, using the cane is an intense use of my spoons, to the point where if I have too much to do I can’t even bother because it just winds up with me on a chair or bench in tears. Or the cane causes additional pain in my back or shoulders.

There are others that come to mind. My medication provides me with more pain free days, which is a good thing. This is an active choice I made with the advice of my doctor whom I was lucky enough to find at this duty station. The flip of that coin is that I have side effects which means that I can not always drive places, or have the energy (HA!) that I want to do things with my family, to name a few. This might not sound like a huge accommodation, but it makes a great impact on my family life, people who play a huge role in my care.

I know that some people use caffeine to both relieve some pain and migraine effects (I sometimes do) but that this has the crash effect at the end of the day (for me it means my spoons run out faster).

So, gentle readers, what accommodations do you have/use that conflict…uhh…internally? What individual needs to you have that you have to weigh daily?

FWD/Forward

FWD (feminists with disabilities) for a way forward