Monday, July 6, 2009

Disability 101: ABs/TABs Suggesting Treatments to PWDs

I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!

Many able-bodied people, perhaps in a spirit of wanting to help those they know who are in pain, disabled, or chronically ill, may suggest different treatments or ways that they believe the disabled person should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get...well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD/chronically ill person, namely:

...that they cannot be trusted to manage their own health, disability, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill; the treatments that they have worked so hard to find, additionally, work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “wellbeing,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of PWDs and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the PWD’s humanity. Unless you are a professional, doctor or other specialist working with the PWD, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the PWD should be undergoing to yourself.

...that you are frustrated by the CHP/PWD's inability to get better. You may not say or even think this outright, but in some cases, actions speak louder than words.

...that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the PWD/chronically ill person many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the PWD’s/chronically ill person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you--an able-bodied person--feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).

In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, or health conditions (including mental health conditions). For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many PWDs and ill people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities or chronic health conditions.

Tuesday, May 26, 2009

Disability 101: The PWD as "Brave" or "Inspiring" Trope

What’s wrong with telling a PWD/person with a chronic illness or disability that they are “brave” or “inspiring”? It’s meant to be a compliment!

The notion of PWDs/the chronically ill or pained as “brave” is a stereotype. It may be a positive stereotype, but that does not mean that it is not also limiting to many PWDs. Many people with disabilities and/or chronic health issues are just trying to live their lives, and do not need to be constantly told that they are “inspiring” because they can do things that many able-bodied people take for granted. This stereotype also reinforces the “Supercrip” trope, in which the PWD is viewed as superhumanly awesome and as able to do things that are amazing all of the time, or as somehow amazing for doing everyday tasks.

The “brave”/Supercrip trope, if used, may strip PWDs/the chronically ill of their humanity, and may make them feel like you are reducing them to a stereotype for your own inspiration instead of actually treating them like fellow human beings. Some people who have disabilities, chronic illness, or pain do not want be heroes from whom able-bodied people can gather “inspiration,” particularly when it is at the expense of their own subjectivity. Remember that bravery or the capacity to inspire others is not based solely on one’s physical, emotional or mental ability/abilities, or lack thereof. None of us—-able-bodied or disabled—-can be brave, awesome or inspiring all of the time.

Wednesday, May 13, 2009

Disability 101: Invisible Disability

What is an “invisible disability?”

“Invisible disability” is pretty much what it sounds like: a disability that may not be obvious to the casual observer, but one that nevertheless impacts the person who has it in a number of ways—-often to the point of impacting the daily life of the afflicted person. “Invisible disability” is most often used to describe conditions like Chronic Fatigue Syndrome, Fibromyalgia, the early stages of MS, Restless Leg Syndrome (RLS), Lupus, Epilepsy, sleep disorders, Irritable Bowel Syndrome (IBS), and chronic pain. The term is also used to describe mental health conditions that adversely impact one’s daily life and functioning. Often, people with invisible disabilities do not use “conventional” markers of disability, such as a cane, wheelchair or assistance animal. Because invisible disabilities are not easily discernable to the casual observer, many of these disabilities are not taken seriously by many able-bodied people, or even thought of as disabling conditions.

Wednesday, May 6, 2009

Disability 101: Able-Bodied Privilege

What is able-bodied privilege?

The term able-bodied privilege refers to the numerous benefits—-some hidden, many not—-that many societies and cultures accord to able-bodied people. Despite many folks’ paying lip service to notions of equality for PWDs, the chronically ill, and those with chronic health conditions, able-bodied privilege still exists, and there are still a lot of people who are resistant to the idea of a truly equitable, accessible society, whether because of possible cost to the public or other objections. Able-bodied privilege is often hard for non-disabled people to spot; yet, in the words of the famous Palmolive dish soap ad, most of us are “soaking in it.”

Many cultures have social expectations, structures, cultural mores, and institutions that are set up to accommodate able-bodied people with the most ease; this is, of course, problematic for those who do not fit the standard of “able-bodied,” whether in whole or part. Able-bodied privilege also encompasses things like not having to worry about one’s energy level and/or pain level on any given day, the possible negative reactions of others to one’s needs due to his/her/zie’s disability or chronic condition, being stared at or questioned about (with varying degrees of invasiveness) his/her/zie’s disability or condition by strangers, her/his/zie’s ability to move for long distances or on a variety of surfaces without inconvenience/discomfort/pain and at a pace considered “appropriate” by others, or being ignored by able-bodied people when one needs assistance in public. For more examples, see Rio’s update on Peggy McIntosh’s famous article “White Privilege: Unpacking the Invisible Knapsack.”

Tuesday, May 5, 2009

Disability 101: Disability, Ableism, and AB/TAB

Hello, everyone! This blog has had a rather long hiatus for the past year or so, and since I am eager to start updating again, I have decided to start a "Disability 101" series of posts. My inspiration was piqued by the Finally Feminism 101 blog, which is brilliantly maintained by tigtog of Hoyden About Town. I hope that this series will answer some 101-ish questions about disability. My hope is that this will serve as a starting point for people (of all abilities) who wish to learn more about disability, chronic illnesses and health conditions, and the issues surrounding disability/CI/CHC terms, etiquette, and frequently-asked (and pontificated-upon) questions. (In case you're wondering who the hell I am and/or why I am taking on this project, my bio is located here.)

If you have any comments or suggestions, please feel free to leave them in the comments field; you may also contact me via my personal blog. Please be respectful and on-topic when commenting. I consider this a safe space for people with disabilities (PWD), people with chronic illnesses, and people with chronic health conditions, and the caliber of the comments must reflect this. Please also abide by the commenting guidelines outlined here (the link goes to my cartoon blog's comment policy, mostly because I do not have the energy to type out a whole new commenting guide). Linking to posts here is, of course, welcomed and encouraged.

Also, please keep in mind that I do not speak for *all* PWDs and folks with chronic illnesses or health conditions in this series. It is not intended as "the" guide to 101 questions on disability; my intent is to offer (pretty subjective) answers to common questions on disability, and of course, there will be folks who disagree.

Thanks, and enjoy!


What is “disability?”

The World Health Organization defines “disability” in the following way: “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”

Additionally: “[D]isability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” [Source]

But aren’t we all disabled in some way?

No. This sort of "folk wisdom" implies, directly or indirectly, that mundane things—things that may be minor inconveniences (at least for some able-bodied people--those with whom this bit of "wisdom" seems to be most popular), but that are not fundamentally impairing or restrictive to one’s quality of life or participation in civic and/or private life—are disabling, when they are, in fact, not. Disability, additionally, is a term that refers to a long-term or lifelong condition.

What is “ableism?”

Ableism refers to discrimination, devaluation, misconceptions, stereotypes, and prejudice—conscious or unconscious—of and against people with disabilities, the chronically ill, and people with chronic health conditions. As a culturally-based structure that often intersects with other oppressive “isms,” systems of privilege, and “-phobias” (such as racism, sexism, homophobia, xenophobia, white privilege, cisgendered privilege, class/economic privilege, and transphobia) ableism assumes that able-bodied people are the “norm” in society, and as a result, culture, various institutions, attitudes and social mores are formed in accordance with the needs of able-bodied people.

What is meant by the terms AB and TAB?

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.

Sunday, February 10, 2008

Alexis: Alone No Longer

I have been searching for an explanation for my symptoms nominally since 1991 and in earnest since 1995, when the pain made living in my own body a hellish experience. For years, I heard doctors tell me that "everything is normal" and they "couldn't explain" why I was exhausted, confused, depressed, and in constant pain.

And with no explanation, no one was interested in treating me. Why should they? I was an apparently healthy, albeit apparently depressed, teenage girl complaining of vague and variable pain, constant nausea, confusion, exhaustion, and depression. My primary care physician, convinced I would "grow out of it," never bothered to refer me to anyone, or to prescribe anything other than Valium - which did nothing.

Meanwhile, my peers and teachers were no more useful. From fourth grade through undergrad, I heard almost daily that I was "too sensitive," that I "needed to slow down and relax," that I was a "crybaby," that I was "making it up," and that I was "faking it" to "avoid responsibility." Never mind my near-perfect GPA or my laundry list of accomplishments and honors - I was a "shirker."

The pain was, and is, real. Yet, by the end of high school, everyone who was not living with my pain had convinced me I was just a whiny crybaby. I couldn't, as a recent New York Times article put it, handle "aches that other people simply tolerate." I actually believed other people did "simply tolerate" the kind of pain I lived in; in fact, I even believed the horrible pain caused some people's shocking rudeness. (Imagine my surprise when I discovered many rude people are in no physical pain at all - they're just rude.)

By 2000, I had learned two things: that I was in crippling pain, and that it was somehow my fault. Throughout college I blamed myself for every class I missed, every party I couldn't attend, every meeting I had to skip - so I could sleep, or eat, or curl up on the bathroom floor and cry. Still my doctor did nothing. I graduated summa cum laude, holding the university record for most earned undergraduate credits, and all I could think about was everything I had NOT done because my body stopped me.

It only took one semester of law school before I had had enough. By this time - it was 2005 - I had diagnoses of chronic myofascial pain syndrome, cervicalgia, chronic daily headache, migraine, primary dysmenorrhea, reactive hypoglycemia, irritable bowel syndrome, and TMJ disorder - and I suspected hypothyroidism and MCS. All of these things followed the same pattern. They got worse together; they got better together. I assumed the constant battering from the known disorders caused the constant body aching, the disturbed sleep patterns, the cognitive disabilities, the inability to handle even moderate levels of sensory stimulation, and the chronic nausea. I had no idea those symptoms, too, had a name.

Despite having a new doctor who actually knew how to listen, it took me two more years to shake the ridiculous notions that I was merely "too sensitive" and that the pain was somehow my fault. Perhaps the single biggest help was when my primary care doctor referred me to an anesthesiologist and then a neurologist and a physical therapist, all of whom had the same attitude: "your pain is real and there is something we can do about it." No one - literally NO ONE - had ever told me that before. Some days, I still think it's nothing but a pipe dream.

Having a name for the common link between all my symptoms, that plague I have always known exists and yet have always blamed myself for, has changed my life. The pain is no longer my fault. It's not something to ignore or fight, but to trust and treat. My "perfectionism" and "ambition" are no longer failings, but assets. I am no longer crazy. And I am no longer alone.

Tuesday, January 29, 2008

Tom: Taking Pain Seriously

I was first diagnosed when I was sixteen, but the symptoms had been around in some form or another since I was eight. That was when my family uprooted and moved city. Moving is hard for everyone but I took it harder than most. My life changed in what seemed like overnight, I used to be able to do everything but suddenly I was chronically lethargic and I put on a lot of weight.

When I was around ten, I had my first experience with pain. I woke up one morning and I simply couldn't walk, my knees were in agony whenever I tried to move. As everyone who has fibro has experienced, the doctors couldn't find anything wrong and my blood was perfect. I felt so guilty, like I was nothing but a drain on everyone and they might not even believe me, something I still struggle with. It persisted for several weeks then as instantly as it came it left. Since then I get those same bursts of pain and there's no rhyme or reason in the duration between attacks, the duration of them or where in my body it will manifest.

I ended up going to a private high school known for producing top athletes where being obese earned me merciless bullying, and instead of making me fitter the rigorous PE schedule destroyed my body. After my parents divorced and I was living with mum, we'd argue every morning about how sick I felt, she never believed me and I got regular beatings, and to top it off she lied and told anyone with authority that I beat her, and as she said, no one did believe the male in any case of domestic violence, even though I was still a child. The more anguish in my life, the sicker my body got.

In the last year of school I completed, I made a friend online who lived in a different state and happened to suffer from fibromyalgia, and as we got to know each other, we both knew that was exactly what I had. I'd hate to think what life would be like now if I still didn't know what was wrong with me, I owe so much to her. At the end of that year I lived with her for a while so I could get diagnosed by her doctor. Thankfully when I came home I moved in with dad who is very supportive and understanding.

One of the biggest challenges is just trying to be taken seriously. I think in society, chronic illness is either seen as terminal or one that can be controlled by popping a pill every day, anyone who doesn't fit into one or the other is a hypochondriac or a liar. Being obese too, like many people who have little energy to use on non essential things like exercise, I've known people who think that I'm only disabled because I'm fat. "All fat people have no energy but they still go to work and get on with life" and "It's your own fault for being a glutton in the first place" are two things I've heard enough for one lifetime. Many of the same people who support and even donate to "sexy" illnesses like leukemia, spinal cord injuries etc. will expect the rest of us to pull ourselves up by our own bootstraps when we have cinder blocks tied to our arms. I still only know a handful of people who believe I'm sick.

The other challenges are the lethargy and depression. The pain I can usually handle, but as a young person, trying to find my place in the world with no qualifications and high demands is impossible. It's very hard when I see other people who got fibro in their late twenties or thirties, after they had gone to college and got experience working so that at least they might be able to get a good part time job. For me the only job I could get is manual labour which would be disastrous for my body. I never graduated from high school so no university will accept me. I've tried a few times to do other kinds of courses but I've always run out of steam too early to complete them so far. If it was because I was stupid I'd be okay with it, but I know I'm smart and it's only because of my fibro and bad childhood that I did so poorly, it's a very bitter feeling.

It's taken a long time to find things that help, but without a good psychologist who practices EMDR I wouldn't even have the courage to leave the house, and a few months ago I was given a ray of hope in the form of Zyban. It's not perfect or even completely adequate for my needs, but it's given me enough energy that I feel like I'm actually alive rather than floating in a cloudy half-awake-half-asleep meaningless existence. I don't want to get my hopes up but I do feel like things might work out okay in the end.

We live in a world that's evolved into a hyper quick fix globalised society where we're also expected to not only keep up with the Joneses, we have to decimate them, and it's been quite a painful but eventually rewarding learning experience discovering that life isn't a race. I can only do the best with the tools I was given, and I feel like I'm doing that now.