Category Archives: identity

The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture

disability activism, how to be accessible, identity, invisibility, justice, media and pop culture, mental health, movies, normality, othering, politics, race, representations, social attitudes, television

Last week s.e. smith and several other members of the disability community, including Alice Sheppard (a dancer with AXIS wheelchair dance company), TK Small (a lawyer and disability rights activist), Christine Bruno (who works with the advocacy group Alliance for Inclusion in the Arts), and Maysoon Zayidd (an actor and comedienne with Cerebral Palsy).

came together on the WBAI show The Largest Minority to discuss Glee and depictions of disability in popular culture. This particular episode of the radio show was inspired by s.e.’s post, A Very Glee Christmas.

You can download directly from their site: This is a direct download link to save-as. Alternately, you can play it on the WBAI site by going to their archives and scrolling down to Shared Timeslot Wednesday 10pm to 11pm on Wednesday, December 22, 2010 10:00 pm. Alternately, you can read the transcript.

The actual show itself doesn’t start until 3:52 in to the program slot.

It’s taken me a while to get the transcript of this done, for which I apologize. I did mean to get this up far faster than I did. I also should note that I had some difficulties always identifying who was speaking, and there are points in the program where the show’s audio cuts out terribly and I’m unsure what they’re saying.

Continue reading The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture →

Guest Post: I Do Not Suffer From Autism

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Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.

I do not suffer from autism.

I suffer when someone calls my way of being a disorder.

I suffer when others invest time and money to prevent people like me from being born.

I suffer when anyone suggests that I might recover or be cured.

I suffer when others feel sorry for me or for the family I have created.

I suffer when I fear that people will consider me broken.

I suffer when my being autistic scares people away.

I suffer when others try to silence me.

I suffer when people suggest that I do not have all the same feelings they do.

I suffer because I must describe my way of being by referring to a medical diagnosis.

I suffer because I live in a society that does not celebrate difference.

I suffer because I live in a culture that does not cultivate sensitivity.

I suffer because I live in an environment that values appearance over substance.

I suffer because I live within a social order that calculates human worth based on productivity and conformity.

I suffer because I live in a world that does not honor the gifts that autism brings me.

I suffer because I have learned to apologize for who I am.

But make no mistake: I do not suffer from autism. I do not suffer from who I am.

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

What is Ableism? Five Things About Ableism You Should Know

101, Ableist Word Profile, deaths, disability activism, identity, normality, othering, policy, politics, relationships, representations, social attitudes,

Ableism is discrimination against people with disabilities, including the expression of hate for people with disabilities, denial of accessibility, rejection of disabled applicants for housing and jobs, institutionalised discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.

1. Ableism has a dictionary definition.

The Oxford English Dictionary traces the world ableism back to 1981; likely the word was in use amongst activists before then.

[< ABLE adj. + -ISM suffix, after RACISM n., SEXISM n.2, etc. Compare ABLEIST adj., and also earlier ABLED adj. 2, ABLED n.] orig. U.S. Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people. 1981 Off our Backs May 39/1 ‘Ableism’that is, the systemic oppression of a group of people because of what they can or can not do with their bodies or mindsis the result of..ignorance. 1993 R. HUGHES Culture of Complaint iii. 162 But certainly clause (3) made it clear that he was against racism, sexism, ableism, lookism and any of the other offences against social etiquette whose proscription by PC was already causing such mirth and laughter among the neo-conservatives. 1994 Canad. Woman Stud. Fall 92/2 Just as there is racism in the feminist movement, there is also ‘ablism’. Able-bodied women have not fully accepted women with disabilities. 2006 C. OYLER & B. HAMRE in C. Oyler Learning to teach Inclusively viii. 145 Although racism and sexism..are recognized as serious challenges to fairness, equity, and democracy,..ableism is often not even acknowledged.

It defines ableist as “Characterized by or exhibiting ableism.”

I mention the dictionary definition because people often claim that ableism is a made-up word that internet activists created just to annoy them, as opposed to a word with history that people with disabilities ihave been using to define their experiences for at least 30 years.

2. Ableism can be deliberate.

A. The Canadian Government went to court so they could continue to make their web content inaccessible to screen readers.

B. Clint Eastwood argued vehemently that 10 years was far too short a period of time to expect that businesses would follow the Americans with Disabilities Act (ADA) and painted himself as a little guy fighting back against the “sleazy lawyers” preying on “the disabled”, rather than as someone who had been breaking the law for 10 years and was now choosing to fight for his right in court to continue to do so. John Stossel argued earlier this year that the ADA might require businesses to be accessible, and this was unacceptable 20 years after the ADA had been passed. [Content warning: John Stossel]

C. Where’s the Benefit has spent the last few months detailing out how cuts in spending will affect people with disabilities. It’s hard to pick just a few examples. How about the Member of Parliament who declared that anyone who was on Twitter too much wasn’t really disabled. Or what Disability Living Allowance (DLA) actually does being misrepresented by both the government and the press?

D. Dave Hingsburger: Service Interupted:

‘Purposeful exclusion,’ I said, ‘there is no way anyone could design this, approve this and build this, without knowing that people with disabilities will never be able to use it. That makes it purposeful. The fact that only certain people can now use it make it exclusion.’

‘I’m sorry,’ she said but I interrupted.

‘This is bigotry in concrete, this is prejudice made of steel and glass, this is how builders and designers and hotel managers spit in the face of those with disabilities. They knew, they didn’t care, they did it anyways.’

E. Politicians across Canada, who make 30 second advertisements that are carefully scripted to make the best impact, don’t use the subtitling option when they upload those same 30-second scripted videos to YouTube. But I guess some politicians are okay with their videos looking like this (image description below):

Photobucket

Image description: Michael Ignatieff (older white dude in a sensible blue shirt and tie, his hair a bit windblown) with the caption “Don’t let anybody into Medicare”.

Actual quote: “Don’t let anybody intimidate you”.

3. Ableism has an academic definition.

Here’s a good example:

Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.

Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.

You can also get a degree in Disability Studies. There is a Disability History Association. There are several academic list-serves dedicated to discussion disability. You can go to disability-studies focused conferences. You can go to Deaf-studies focused conferences. You can get a degree in Deaf Studies. You can read a wide variety of academic books that discuss the history of ableism.

Or you could read people talking about their lives on their blogs. There are a lot of blogs where people talk about experiencing ableism.

4. Ableism can be accidental. This doesn’t make it okay.

A. I don’t think Google woke up one morning and decided to make some of their products completely inaccessible to certain users. I know they managed to pull it off anyway.

B. I don’t the mainstream media woke up one morning en masse and decided to ignore protests in support of the Community Choice Act. I know they managed to do it anyway. More than once.

C. I don’t think Canada’s Minister responsible for Disability-related issues deliberately sought out a wheelchair-inaccessible space for her constituency office. I do think continuing to have it 7 months after this was pointed out to her in Parliament is deliberate, though.

5. Ableism kills.

Record of the Dead: October 2010
Record of the Dead: September 2010
Betty Anne Gagnon and Murder Most Foul
Quick Hit: Parents of Disabled Children
Tracy Latimer is dead because her father is a murderer

Heel, toe

bodies, identity, normality, , , , ,

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Guest Post from Lisa: Invisible Ableism

guest post, identity, introspective, invisibility,

Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.

So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.

When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.

In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.

This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.

So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.

This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.

Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?

Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.

And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.

Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.

I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.

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We also have the right to be in public

feminism, gender, guest post, i'm right here, identity, introspective, normality, othering, social attitudes, , , , , ,

This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…

I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.

These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.

I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.

This is ableism.

Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.

I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.

These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.

One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.

All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.

Reactions, part two: Social aspects

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In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

Reactions, part 1

age, bodies, identity, invisibility, life changes, medical practice, normality, , , ,

[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]

I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.

Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.

The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.

My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.

When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.”  The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.

Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.

The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.

And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.

For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).

John Stossel Wants YOU! To Be Afraid of the ADA

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Not being from the US, I had this idea in my head that the Americans with Disabilities Act (ADA) must be awesome. I mean, come on! It’s been 20 years now! Ramps to every building, disability friendly policies, accessible washrooms in every hotel lobby! I get all starry-eyed just thinking about it.

People with disabilities who have actually been in the US are probably either rolling their eyes or giggling at my naivety.

In the last few weeks, I’ve read about airlines being fined for not following the ADA, despite repeated complaints from customers that they hadn’t been, continuing issues with post-secondary education, online content, and accessibility for students who are blind or otherwise vision-impaired (no mention of blind or visually impaired teachers) and students needing to sue in order to get attention to the fact that the new content delivery system was not accessible to them (again, no mention of blind or visually impaired teachers), the Attorney General of Massachusetts needing to step in to demand movie theater chains provide accessible content in all their theaters… The list goes on, while “advocates” tell people with disabilities not to sue because it upsets the non-disabled when they do.

And maybe those “advocates” have a point. Because even though one can find example after example after example of law suits – threatened or actually carried out – before businesses, universities, and even government offices will follow the ADA and “allow” people with disabilities the “rights” they’re guaranteed in the US, some folks still feel the need to produce opinion pieces claiming these lawsuits are frivolous and that the people who take them on are parasites (Content Warning: John Stossel).

Under the ADA, Olson notes, fairness does not mean treating disabled people the same as non-disabled people. Rather it means accommodating them. In other words, the law requires that people be treated unequally.

The law has also unleashed a landslide of lawsuits by “professional litigants” who file a hundred suits at a time. Disabled people visit businesses to look for violations, but instead of simply asking that a violation be corrected, they partner with lawyers who (legally) extort settlement money from the businesses.

Some disabled people have benefited from changes effected by the ADA, but the costs are rarely accounted for. If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare? Extra-wide bathroom stalls that reduce the overall number of toilets are only some of the unaccounted-for costs of the ADA. And since ADA modification requirements are triggered by renovation, the law could actually discourage businesses from making needed renovations as a way of avoiding the expense.

I feel like I’ve taken apart aspects of this argument before, mostly because it seems the arguments get repeated over and over until one wants to make a Bingo Card and be done with it. But, to save me some keystrokes: Let’s Bust Some Myths: People with disabilities just want to sue the world into compliance (there’s a transcript to the video linked there in the comments [1. Back when I wrote this I felt like I was making a very witty point by not “choosing” to be “nice” and putting the transcript up – if you wait for people to be “nice” then you wait a long time! I wouldn’t do that now because I think it’s shitty to make people sit around and wait so I can score some sort of political point.]), Needs Are Not Special and Accommodation is not “Special Treatment” (written by s.e.), Why Being Nice Isn’t Enough (which is meant to address the “just ask for accommodations!” part), “Bad Cripple” – you know, the fakers who are just scamming the incredibly generous disability system for the huge cheques they can rake in – oh, and we’ve got multiple posts just here at FWD about workplace accommodations being treated like a huge drama and a favour that doesn’t need to be granted rather than a right, people who work with actual people with disabilities assuming all people on prescription drugs are dangerous addicts, and how the opposite of disabled is not employable.

I think my favourite bit of the quote above, though, is the “If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare?” I love that sentence, I want to cross stitch it on a little sampler and hang it up on my wall.

A Very Short List Of Businesses You Are Unlikely To See Wheelchair Users In:

1. Ones that don’t have a ramp to allow access to wheelchair users.

Seriously, that’s the basic criteria for shopping in this one-wheelchair-user household. We choose our restaurants, our coffee shops, our bookstores, our yarn stores, our sex toy shops, our grocery stores, our housing, our favourite tea place all on whether or not the shops themselves allow wheelchair users to enter. We don’t even go to one of the malls in the city because half the shops are too crowded to allow wheelchair user, so yes, John Stossel, if your business doesn’t accommodate wheelchair users chances are you don’t have many customers who are wheelchair users.

(Gentle reader, I cannot believe I just typed that sentence 20 years after the ADA passed into law.)

Honestly, that John Stossel is paid actual money to write opinion pieces that amount to “cripples are just sue-happy freaks, the ADA is why the Exxon oil spill happened, and service animals like snakes are ruining it for everyone else” – especially while service animals are constantly being turned away illegally – is especially irritating when we’re still fighting for something as simple as the right to be paid minimum wage for our work.

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

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Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.