Tag Archives: disability 101
We all experience limitations and restrictions. Not all of those — like not being able to speak a second language — are disabilities. The second language example is a true comment, and I would have thought that it was a pretty obviously bad comparison. But it and other similar remarks kept coming up. In addition to those comments, I was also thinking about a second order of experience: the kind where someone claimed kinship/commonality/knowing what I am going through on the basis of their limiting, but non-disabling experience. I’m referring to the kind of thing like, for example, comparisons of feeling tired from having flu and the tiredness in chronic fatigue syndromes or, say, multiple sclerosis. A second example is that feeling sad or disappointed is not the same as the emotion of depression.
I reject the argument that feminists can’t fight for women and for poor, queer, disabled, and non-White people. Because guess what? Many women are poor, queer, disabled, and non-White. For them, being part of the latter means many more disadvantages and much more discrimination than just being a woman. A feminist agenda has to recognize that women are not simply all oppressed in the exact same way because they share a gender.
Much of [fraudulent cancer patient Ashley Kirilow’s] success seems attributed to the fact that she easily roused pity with her little lost girl story and her brave smile. Kirilow embodied a version of white womanhood that we want to believe in (or at least we’ve been socially conditioned to embrace it): pretty, plucky, determined, and in need of rescue.
A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.
The Medical Research Council study looked at 20 non-autistic adults and 20 adults with Autism Spectrum Disorder (ASD).
They were initially diagnosed using traditional methods, and then given a 15 minute brain MRI scan. The images were reconstructed into 3D and were fed into a computer, which looked for tiny but significant differences.
What is able-bodied or abled privilege?
The term able-bodied/abled privilege refers to the numerous benefits—-some hidden, many not—-that many societies and cultures accord to able-bodied and/or abled people. Despite many folks’ paying lip service to notions of equality for PWDs, the chronically ill, people with psychiatric conditions, and those with chronic health conditions, abled privilege still exists, and there are still a lot of people who are resistant to the idea of a truly equitable, accessible society. Able-bodied and abled privilege is often hard for non-disabled people to spot; yet, in the words of the famous Palmolive dish soap ad, [YouTube link] 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 and/or abled people with the most ease; this is, of course, problematic for those who do not fit the standard of “able-bodied,” or “fully able,” whether in whole or part. Able-bodied or abled 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, being able to make decisions about the course of one’s medical, psychiatric, or other type of treatment without being questioned by others as to whether he/she/zie is making “the right choice” or can make a “rational” decision about his/her/zie’s own treatment-related choices, or being ignored by able-bodied people when one needs assistance in public; these kinds of able privilege masquerade as “the norm” for those without disabilities. For more examples, see Rio’s update on Peggy McIntosh’s famous article “White Privilege: Unpacking the Invisible Knapsack” [link goes to Amptoons].
An earlier version of this post was originally posted at Faces of Fibro on May 6, 2009.
Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.
Someone walks into my kitchen for the first time looking for something they will more than likely find the cupboards nicely arranged. I like things with the labels facing out, neatly lined up, dressed to the front. I like to have like items together (my cooking items are in a separate area from my baking items, and snacks, to begin to scratch the surface) to make it easier to find things. Our Korean apartment is smaller than we are used to in some areas, so being organized is a must when it comes to storage. We have Tupperware canisters lining the counter tops with frequent used and bulk items in easy reach, and also in the fridge w/ the produce already prepped. When we bring meat home from the market we divide it into portions and vacuum seal it before storing it. Some of this is for space sake, some of it is because I like to cook and will use spoons I sometimes steal from elsewhere to do so, and having the kitchen arranged as such makes that easier. I have had more than one guest wander through the kitchen chuckling and mention to me how OCD it is (which really doesn’t make sense if you think about the acronym).
No. My kitchen is clean. It is neat. It is sometimes meticulous (when the dishes are done), it is user friendly, well organized, color coded, over-the-top arranged, even. My aunt would say you could eat off of my floors (some days, but we do have a seven year old).
OCD, or Obsessive Compulsive Disorder, isn’t just the tendency to keep things all tidy like Mary Poppins on a sugar rush. It doesn’t mean that you like your clothes hung in chromatic order or your socks folded a certain way, or even that you sort your M&M’s into color groups before eating them. It isn’t your friend with her dust free home or Bree VanDeKamp hair or Emily Gilmore six-inch tapers.
It does mean that you tend to have thoughts (obsessions) that intrude into your mind and make you extremely uncomfortable, because you know that they are unreasonable. Some people have thoughts where they hurt themselves or their loved ones. When I was much younger I once had repeated visions of shoving a corkscrew into my eye while at the bar where I was working. Understandably it was bothersome, and actually there were times that it worried me to tears, because I knew I wasn’t going to shove a corkscrew into my eye, and I couldn’t figure out why my brain was giving me that picture. People often engage in repetitive actions (compulsions) to alleviate the stress of these thoughts. I wiped bar glasses and liquor bottles until they were spotless, and later at home plucked my eyebrows into oblivion because they were never quite symmetrical. I brushed my teeth until my gums bled…anything to keep my mind off of that fucking corkscrew. In your mind you know that having washed your hands or brushed your teeth fifteen times before school has probably already taken care of any germs (and skin or enamel), but you can’t get the thoughts of those germs gone. So you brush, or you wash. And you still think your hands are covered in bacteria or you can feel your teeth rotting in your head (even though you know it isn’t true). So you wash again…and you miss that first class…even though you know better.
It overcomes your life. OCD isn’t just some cute little habit you have of always placing everything on your desk perpendicularly or always lining shoes by the door. It actually interferes with your life and how you are able to live it.
When I was in college I knew that I wasn’t going to blow up my apartment. My rational mind was well aware of that fact, even though I could see the building on fire and me standing outside of it. But after cooking, when I had to leave for class, I had to go over to the gas stove and turn all of the dials on to make sure I had turned them off…even if I hadn’t used them. The oven too. I just couldn’t stand the thought of leaving the gas on and having something happen to my roommate while she slept. Then I would grab my bag…and even though I knew I had just. checked. the. damned. knobs. I had to go back and check them again. After this I might get out the door and lock it, but then I’d have to go back in and check again. The next time I might make it all the way down to the main door of the building. “What if you missed one? You could blow up the whole building!”. Back up three flights of stairs, unlock the door, and check the knobs again. Of course they were fine, just like the last three fucking times I checked. That didn’t stop me from having to go back two more times, once after thawing my car, and once after I had actually left the parking lot, made an illegal U-turn, and gone back. I kept seeing the whole building go up like a giant bonfire on a July evening in Michigan.
I was two hours late for class.
I was obsessed with numbers. If I had pieces of something I couldn’t eat it unless it could be divided into odd-numbered groups of odd numbers. My weight became an obsession, which isn’t at all uncommon in people with OCD, and no matter how much I lost I was certain that I was disgusting and fat and gross to everyone who saw me. I actually measured “ins” and “out”, and I will leave you to those pleasant details all on your own.
Years of therapy later I am able to find myself in a place where I can control my OCD, and I have come a long way in managing it. This isn’t true for everyone, because each of us are unique and what worked for me isn’t going to work for the next person. I am by no means “cured”, but there is something to be said for being in a stable home environment for the first time in my whole life that has turned the corner for me. There are things that will cause me to slip…
Some other fun facts about OCD.
There are some lesser known offshoots, such as Trichotillomania and Dermatillomania. These conditions begin with the same intrusive thoughts, but instead manifest with compulsive hair pulling and skin picking. I have both of these conditions. The hair pulling left me with little to no eyebrows, and an embarrassing bald spot on the back of my head that covered nicely with a military style bun. Without babbling on as I am wont to do, it was another thing I had to work through with a mental health professional (and one awesome esthetician). The skin picking is still a challenge, and as stress in my life heightens so does that. This is the most embarrassing of my anxiety issues because this leaves the most obvious marks on my face. My arms I can hide with long sleeves. Even though I am incredibly aware of the marking and scarring left, most people don’t notice it, unless they are very close to me, and even then most don’t unless I am comfortable enough around them that they have actually seen me doing said picking.
So, I believe we can see why the usage of OCD is ableist here: it isn’t some funny quirk. You are trying to be witty. I get that. But your witty words mean things about my life, parts of my life that I have worked to overcome, and which people I know are still living with daily and that just isn’t funny. It isn’t something we close up in a cupboard and laugh about with friends*. It is a daily struggle for people who absolutely know that they are doing things that are unreasonable to help them cope with the anxiety of things that they also know are unreasonable. We slog through it, grind it down over years, beat it back, and work our asses off to gain chunks and pieces of our lives back from it. That is no joke to us. It is extremely ableist for a person who is in control of their thoughts and actions to appropriate this term to mean that someone is really particular about the way they like things.
So, no, your very tidy friend is not OC. Unless sie is. And then, ha ha, sie probably doesn’t appreciate having hir life poked at.
*OK, you got me. Sometimes we do. But that is our right, not yours.
In the Blogs:
A lot of people have caught on that they need to provide access for the disabled when they build something, but apparently access is only needed for Them.
You know, Them. There’s Them, and then there’s Us. They might be disabled, but We aren’t, and never will be.
Accessible restroom? Oh, no, because the restroom is only for employees, and none of our employees is disabled (or ever will be).
Elevator to the second floor? Oh, no, because the public doesn’t need to go to the second floor, and nobody who works there is disabled (or ever will be).
Access to the stage? Oh, no. There’s access for the audience (Them), but the actors and singers and stagehands (Us) aren’t disabled (and never will be).
[This really resonates with me, especially after Campaign School this weekend. Although they did address issues of making accessible campaign literature and ensuring your office was accessible, everything was spoken of as though no one with a disability would be part of a campaign, either as a volunteer, employee, or candidate. Them, and Us.]
But, you know, it’s not just people of color who are constantly expected to show extraordinary compassion when faced with bias. It is women, gays, lesbians and the transgendered. It is the disabled, the obese, immigrants and the poor. Ask any marginalized person and it is a safe bet that they have been told “have a sense a humor,” “don’t be so PC,” “that’s just how so-and-so was raised,” “here’s a great teaching moment, “you have to understand some people won’t be comfortable with x, y, z,” “he didn’t really mean it.”
Students interviewed for this story reported that mental health seems like a low priority on campus. Alexa at New York’s Westchester Community College notes, “Mental health seems to be something that people really keep to themselves.” She describes her community college’s scarce resources as consisting of one social worker and a two-by-three inch bulletin board in the upstairs of the student center. “I only realized it was there while waiting for three hours in the hallway to register for classes.”
Access to services — such as individual and group therapy, consultation and referrals, support groups, medication monitoring and crisis hotlines — varies from school to school. However, most college campuses would benefit from improvement and expansion of their mental health facilities and services. Students are generally granted a few free counseling sessions, but due to increasing financial restrictions, the number of sessions can be scant — as few as five visits per student.
At two of my previous universities, you were limited to less than 10 sessions over a year. I believe my current one has unlimited sessions, but you must call the office between 9:00 a.m. and 9:15 a.m. for a same-day appointment. There is no booking in advance.
In Our Own Words: Fighting for our DLA [UK] [Older post] [DLA = Disability Living Allowance]
DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.
My new favourite website: Wave: Web Accessibility Evaluation Tool. How does your website measure up?
I’ve decided to build an invisible crutch from things that constitute abled privilege, without repeating too much of what is in McIntosh’s list (so read her list, and substitute “disability” for “color” for many of those things).
1. I can, if I wish, arrange to attend social events without worrying if they are accessible to me.
2. If I am in the company of people that make me uncomfortable, I can easily choose to move elsewhere.
Here are some suggested starting points: What work do you do? How’s that going? Do you get paid for it, or is it volunteer work or something you do because you just love it? What blocks you from employment? If you’re employed, what could be better? Do you want a paying job, or do you feel you contribute to society just fine without one? What unpaid work do you do that you value or that others value, for example, emotional support in relationships? If you’re a family member, friend or ally of a person with a disability, what thoughts do you have on work and employment? What’s the employment situation like for PWD in your country or region ?
Health Care & Vulvodynia [U.S. specific]
One of my concerns about health care reform in the US is how it will impact sexual & reproductive health, the domain in which vulvodynia and other pelvic pain conditions are usually classified. As far rights directly related to reproduction and abortion in particular, it’s looking grim. My hope is that patients with pelvic pain conditions will be covered adequately as well. This may not seem like the most pressing issue, since, frequently, sexual health problems will not be directly responsible for death. There are some definite exceptions, notably AIDS, and cancers.
For a few moments, I feel guilty thinking about sexual health in light of other deadly, catastrophic illnesses…
But then I remember that it’s not fair to minimize the very real suffering & misunderstanding that I and other pelvic pain patients go through. And I remember how hard it is to convince others, including doctors, of how very real it is & how difficult it can be to get an effective level of care.
Sidewalks that are functional for an able bodied person are not necessarily useable to someone in a scooter. Poles that can be easily navigated when they are stuck in the pavement, are not necessarily easy to move around in a scooter. Often curbs are not turned down. Sidewalks are carelessly blocked off by cars hanging out of drive ways, and let’s not forget those who think that they don’t have to shovel their walkway in the winter. My personal favourite are those that believe the scooter rider should always yield when faced with a pedestrian on the sidewalk.
I can’t tell you how many times throughout my life that I have used the phrase “that’s lame” or “don’t be lame” in my life. It’s been a part of my vocabulary since grade school. I wasn’t really aware of the exclusionary and offensive nature of the word until college. That’s when I made the connection between the word “lame” and it’s association to people with mental disabilities.
In the news:
McDonald’s in row over mobility scooter [New Zealand]
McDonald’s is yet to deliver on a promise to say sorry to a woman who was denied service in a drive-thru, because she was on a mobility scooter.
Margaret Todd says she could not squeeze her scooter through the front door of McDonald’s in Blenheim, so had no option but to head round to the drive-thru.
Hello, everyone! I am Annaham of HamBlog, and since I’ve written a Disability 101 series of posts, I thought it would be a good idea to cross-post some of the series here. 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. Please be respectful and on-topic when commenting.
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.
Originally posted at Faces of Fibro.