Category Archives: social attitudes

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

activism, blaming, bodies, disability activism, intersectionality, invisibility, medical practice, oyd rants, social attitudes, , , , , , , , , , , , , ,

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

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

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

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

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

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

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

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

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

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

Imperfections

bodies, feminism, gender, social attitudes, , , , , , , , , , , , ,

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

Recommended Reading for 07 October 2010

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

Deeply Problematic: Paperwork & homework, anxiety & ADD: institutionalized and internalized ableism

Paperwork is a form of institutionalized ableism. Paperwork keeps folks who have issues with anxiety, ADD, and likely other disorders from living, from working, from getting the care we need to treat that which disables us. It makes paperwork a daunting, insurmountable task – and its incompletion perpetuates guilt and sends it further away from actually getting done.

Wired.com: Exclusive: First Autistic Presidential Appointee Speaks Out (Thanks to reader Sara for the link!)

Wired.com: Much of the national conversation about autism in recent years has centered around statements by celebrities like Jenny McCarthy and Jim Carrey who claim that autism is caused by vaccines and other environmental factors, and can be cured by things like special diets, behavioral interventions, and alternative medicine. Is that the most productive conversation we can be having about autism as a society?

Ari Ne’eman: No. There’s a disturbing lack of attention to science in that conversation, but the problem goes deeper than that. What we have is a national dialogue on autism without the voices of the people who should be at the center: those who are on the [autism] spectrum ourselves. Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure.

Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures.

We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve. That’s the goal of groups like ASAN, Autism Network International, and of the neurodiversity movement as a whole.

Orlando Sentinel: Chartari Jones: Sanford girl says bullies ‘spit in my hair’

The Sanford girl whose parents said was teased by bullies on a Seminole County school bus in September opened up Monday about her ordeal on national television.

“They would poke me with pencils, call me names and spit in my hair,” Chatari Jones told NBC Today Show host Matt Lauer while wiping tears from her face with a tissue.

WHERE’S LULU: “This American Life” Spotlights “Crybaby” ADA Lawsuit Filers

The episode starts with the extremely-unpopular-with-ablebodies Tom Mundy, who makes a living suing ADA-violating businesses in Southern California. The show’s producer mentions how in California, disabled people can make $4,000 by suing a business for not being up to code. A lawyer who represents business owners estimates Tom has made half a million dollars in just three years.

The producer then drops the bomb that most people who read this blog know all too well, but that most TABs don’t realize: The ADA is not enforced. The government doesn’t even pretend to enforce it – there is no agency (federal, state, regional, or otherwise) to monitor whether or not businesses are complying. So it’s up to people like Tom Mundy to sue in order to gain equal access.

I’M SOMEWHERE ELSE: [No Title]

First of all, why do people have to have recent documentation? Have there been many cases of developmental disabilities, like ASD, just disappearing? Do people with for example dyscalculia just suddenly get better, and then continue to try to get accommodations because they’re just a shitty person who wants to get a leg up on everyone else?

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Review: Stand Up for Mental Health

activism, events, mental health, representations, social attitudes, , , , , , ,

Last night I attended Stand Up For Mental Health Days on Campus, the first evening of the cross-Canada tour of Stand up for Mental Health.

I was trying to sort out a good way of summing up what Stand up for Mental Health (SMH) is, but I figure I’ll just use the description on the website:

David Granirer counsellor, stand-up comic and author of The Happy Neurotic: How Fear and Angst Can Lead to Happiness and Success, created and leads Stand Up For Mental Health (SMH). David teaches stand up comedy to people with mental illness as a way of building their confidence and fighting public stigma, prejudice, and discrimination.

Our shows look at the lighter side of taking meds, seeing counsellors, getting diagnosed, and surviving the mental health system. We perform at conferences, treatment centers and psych wards in partnership with numerous mental health organizations. SMH performs in Prisons, on Military Bases and University and College Campuses, at Government, Corporate and Community fundraisers and Forums, and Most Importantly, for the General Public across Canada and the US.

SMH will be on several university campuses over the next week, so I wanted to take the opportunity to review the show in case people are trying to decide if they want to go.

Go.

While some of the jokes and routines are funnier than others (my sense of humour is a lot dryer than this sort of thing does), the whole point of them is to talk about being Actually Crazy, to humanize what Actually Crazy looks like, sounds like, and behaves like. And it is, remarkably, not like in the movies.

The performance I attended opened with the CBC documentary “Cracking Up” (unsubtitled), which covered a year in the life of the program, highlighting five people who started out afraid to even say their names and ended giving a sold-our comedy performance. The documentary manages to somehow be both hilarious and harrowing, making it clear how much of the social stigma about mental health and mental illness deeply affect those of us who live with it. The people in the documentary learn that they can be funny, that they can talk about what’s happening in their lives, that they can speak about being Crazy. At the same time, though, the audience sees that this is not all just fun and games and being silly. It’s very apparent that these are people whose lives are incredibly difficult because of both the social stigma of mental illness and the actual affects of their conditions. Many of them live in very very small spaces in what are considered dangerous areas of Vancouver. One of them disappears and attempts suicide part way through the year the documentary covers. This is not a Very Special Lesson, but a pointed commentary.

The thing that Granirer and his group does in this is talk seriously about mental health issues while surrounding them with safe and easy-to-digest humour. This isn’t the first talk I’ve gone to at University that does exactly that. Jorge Cham’s talk about Procrastination and how he developed PhD comics also uses humour as the bread in a “people in grad school kill themselves and that’s something we’d like people to avoid doing” sandwich. It’s like folks in North America need to be eased carefully in to acknowledging that short-term or life-long mental health conditions exist, and the way to help is to talk about what’s going on, and what this culture of silence and stigma actually does to people.

On the surface, SMH looks like it’s going to be a fairly simple “come out and see a bunch of crazy people talk humourously about being crazy”, but there is a very serious point to it: mental health stigma kills.

I really recommend people in the Canadian cities the tour is touching down in this week take the chance to go and see the show.

If you’re interested in supporting the program but can’t make it out to a show, consider voting for them in the PepsiRefresh Challenge (Canada), as they’re hoping to mount a larger tour next year.

But Really, It’s For Your Own Good…

accessibility, i'm right here, intersectionality, military, oyd rants, social attitudes, , , , , , , , , , , , , ,

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

Recommended Reading for 1 October, 2010

language, media and pop culture, recommended reading, representations, social attitudes, , , , , , ,

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

First up, something close to my heart as a user of Sydney public transport from Jo Tamar at Wallaby: Accessibility and Sydney’s public transport: people with different mobilities on buses. I am forever glaring at the dehumanising ‘For more information on travelling with wheelchairs, seniors and prams’ sign. No pullquote as the post is about too many things for one, you’ll just have to click through.

From Beth Haller, Ph.D. & Lingling Zhang, Ph.D., both of Towson University, Towson, Md., USA, at Media and disability resources, we have Highlights of 2010 survey of people with disabilities about media representations, and is there ever a lot packed in there:

In the summer of 2010, an online survey of people with disabilities from around the world was undertaken to find out what they think about their representation by the news and entertainment media.

From the Associated Press, (US) Congress changes intellectual disability wording:

Disabilities advocates on Thursday applauded Congress for passing legislation that eliminates the term “mental retardation” from federal laws.

Attitudes Towards People with a Disability Changing Ahead of London 2012

Attitudes towards people with a disability in Great Britain are improving and could be one of the legacies of the London 2012 Paralympics, the International Paralympic Committee (IPC) were told this week at a three day project review with the London Organizing Committee.

From The Irish Times, State urged to ratify UN disability treaty:

FORMER EU commissioner Pádraig Flynn has called on the Government to ratify the United Nations Treaty on the Rights of People with Disabilities.

Speaking on EU disability policy at NUI Galway, Mr Flynn noted Ireland had signed the treaty in March 2007, but had not progressed to implementing its provisions.

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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.

The Canadian Government Is Going To Court So They Don’t Have To Make Web Content Accessible To Screen Readers

accessibility, Accessible Tech, activism, anna rants, blaming, disability activism, how to be accessible, justice, make the world a better place, news, normality, othering, policy, politics, signal boost, social attitudes, technology,

[Content Note: Not all of the links I have included in this piece have comments, but many of them do, and those comments are basically full of “Stupid disabled people wasting everyone’s time and energy by wanting the world to treat them like human beings” comments.]

If you’ve been following Canadian politics this week, you could very easily come away with the impression that the most significant – or perhaps even the only – thing going on with this week’s opening of the Federal Parliament was the Gun Registry Vote.

That there’s a federal court Charter challenge brought forth by Donna Jodhan arguing that blind Canadians are being discriminated against by the Federal Government for refusing to make their website content accessible to screen readers is not really getting a lot of attention. (Cripples these days! It’s like they don’t sell papers/make page views.)

A little bit of background information first. Canada has a Charter of Rights and Freedoms, which went into effect in 1982 and is the Thing against which laws and the like must be “tested” in order to be considered actually legal in Canada. To give some lovely controversial rulings, the reason Canada has no abortion law is because it was found to violate the Charter’s guarantee to security of the person (and no law has since been passed) and it was found that refusing to include “homosexuals” in protections against discrimination violated Section 15, or the right to Equal Protection Before the Law, even though sexual orientation wasn’t included in Section 15.

Section 15 is the important one here:

15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
(2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

Now, I Am Not A Lawyer, and it’s been about 10 years since I studied the Charter, so I’m going to leave that out there and not discuss my personal interpretations because they don’t matter. What matters is two things: 1) What the court says and 2) That the Federal Government is arguing that they shouldn’t have to be accessible to screen readers in court.

The latter is, of course, being read as Jodhan wasting tax payers money in a frivolous lawsuit, not the Federal Government for refusing to have accessible content.

From what I can tell, this is what’s going on: In 2004, Jodhan attempted to apply for government jobs online. However, the site wasn’t set up to allow screen-readers to access the site, so she was unable to do so. In 2006, she attempted to fill her Census out online, and again, the federal government website was not accessible to her screen reader.

On Tuesday [September 21], Jodhan will argue in federal court that her inability to apply for a position on the federal jobs website or complete the online version of the 2006 Census breached her equality rights under the Canadian Charter of Rights and Freedoms.

She will also argue that this violation and her ongoing inability to access the government’s online information and services constitute a breach against all blind and partially sighted Canadians, said Jodhan’s lawyer David Baker.

About 3 million Canadians have visual or other impairments that make it difficult to access the Internet.

The Federal Government is, in turn, is responding with “What, you think you should have a right to access the same information that everyone else can? Ha ha! Ha ha!”:

Internet access to government services and information is not a right guaranteed in law, the government says in its written submission to the court.

“Alternative channels available did allow (Jodhan) to access services and information independently, in a manner that respected her privacy and dignity,” it says.

With more than 120 government departments and agencies and more than 23 million web pages, “it is unlikely that the government’s web presence will ever be perfectly accessible to all,” it adds.

Frankly, if the Federal Government doesn’t think that their websites provide information in a timely fashion, and that access to that information isn’t something that they should prioritize, why are they bothering with them in the first place? And if they do think it’s important, why are they in essence arguing that “It’s important for most people, but not for the three million Canadians who won’t be able to access it?”

I support Donna Jodhan’s fight for equality of access to information for all Canadians. I hope you do, too. If so, I strongly encourage you to email your Member of Parliament and let them know. Perhaps if enough of us contact the government and let them know we value accessibility for Canadians with disabilities, they’ll start acting like we shouldn’t have to go to court just to get it.

This is the email I sent to my MP, who happens to be Megan Leslie, and cc:ed to the leader of the NDP. Please feel free to adapt it to send to your own MP. (This should give you their email address.)

Dear Megan,

I recently learned of Donna Jodhan’s Federal Court case, arguing that the Canadian Government must provide screen-reader accessible content on their websites, as reported in the Toronto Star (http://www.thestar.com/news/gta/article/863379–blind-woman-says-federal-websites-discriminate-against-the-visually-impaired) and the CBC (http://www.cbc.ca/technology/story/2010/09/18/to-blind-accessible-feds.html) In light both Section 15 of the Charter of Rights and Freedoms, and Canada’s recent signing of the Declaration of Rights of Disabled Persons, I’m appalled that the Federal Government would waste tax payers’ dollars in arguing that 3 million Canadians should not have the ability to access government services online or apply for government jobs online.

In this day and age, it’s ridiculous for the government to argue that access to the internet is not necessary. According to the Toronto Star, government lawyers are arguing “Internet access to government services and information is not a right guaranteed in law”. While I agree that this is technically true, in refusing to provide this access, the government is arguing that blind and visually impaired Canadians should have less access to government services and information than Canadians who are sighted.

Megan, every day it is clearer to me how many societal barriers are put in place that prevent people with disabilities in Canada from full participation. The time and energy the federal government is frivolously spending in defending their lack of web accessibility could be far better put to use in bringing the government’s websites up to the same standards as those in other countries, standards that are reasonable to expect in the 21st Century.

This is such an important issue, and I hope that the NDP will work to bring awareness of it to Canadians, and encourage the federal government to stop fighting against people with disabilities, but fighting for them.

Thank you,

Anna P.
cc: Jack Layton

In The News: Toronto Star – UPI – CBC – Globe & Mail

ADAPT Protests partially lock-down White House! Media Yawns, Changes Subject

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I spent most of my weekend pretty much glued to Twitter following ADAPT’s latest action in Washington, DC and wondering where the media was, especially after a huge group of wheelchair users blockaded one of the White House gates and 16 people were arrested. I actually thought that the White House security arresting a group of people with disabilities would surely be the sort of thing that the media would pick up on.

Foolish me! Just like with the Arnieville protests that s.e. wrote about last week, the media is basically ignoring this four-day-long protest in Washington in favour of more important things. Despite repeated hunts by me and several other people, the only mention of the protest, “partial White House lockdown”, arrests, and march is this CNN report, which only quotes White House staff and the ADAPT webpage. Apparently CNN couldn’t even find someone from ADAPT to quote directly. (Also, the photos of the event that ADAPT have posted make it clear that CNN’s report is factually inaccurate.)

[If you would like to read NationalADAPT’s tweets, a good place to start is their September 18th tweet, and just keep going from there. Their timeline includes a variety of photos taken of the event, and also will point you towards other tweeters that were there.]

ADAPT has been protesting at the White House at least once a year (sometimes twice a year) since 1997, and has been holding protests in other cities across the US for 25 years. The focus of their protests for the last 11 years has been the Olmstead Decision and the Community Choice Act.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.

On Sunday, ADAPT held a funeral, complete with casket, to both mourn and bring attention to the number of people with disabilities who have died in nursing homes around the country while fighting to get out of them. Monday involved marching directly on the White House. While CNN reports that 9 people handcuffed themselves to the White House gates, the ADAPT photos and Reports make it clear that far more than 9 people were involved in this action.

The Park Police had closed the sidewalk and street in front of the White House around 10 in the morning as ADAPT approached. When the police used an SUV to block ADAPT and the sidewalk, the bulk of ADAPT charged into the intersection of 15th and G Streets stopping traffic completely. The police had believed they had successfully stopped the line of activists when suddenly all the traffic was stopped and the intersection was packed with activists.

“The people they thought were meek or expendable,” said Jennifer McPhail about the police force, “were the people who had taken their power.”

While ADAPT’s actions continue today across Washington, DC, members who are required to attend court this morning after being arrested have been illegally challenged at the court to produce documentation for their service animals, and need to bring attention to ADA violations to the very people one would expect to be enforcing the ADA.

When a local Washington paper was challenged on their decision not to report anything about the ADAPT protests, their response was first that they don’t cover national protests and then, when it was pointed out this was also a local protest, that it was a matter of debate, and there were protests every day in DC. Other media sources haven’t responded to questions about their lack of coverage.

I do understand this, to a point. Certainly I’ve attended protests that have received very little media coverage, and most of that in either local papers or in grass roots news organizations. However, at what point do we start to seriously question why multi-day – or, in the case of Arnieville, multi-week – protests by people with disabilities are getting ignored? The ADAPT actions have decades of history, and touch on issues that are hot-button topics in the US right now, such as health care, funding for social programs, and the standard of living.

And yet, still, despite everything: we protest, and are ignored.

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.