Recommended Reading for 15 October, 2010

The month’s going fast, isn’t it? 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?

At Deafinitely Girly, Nobody puts Deafinitely Girly in a deaf box:

Sometimes I wonder what I should do about this living in a box thing – should I work with it? Get it some comfy cushions, make myself right at home, play up to the illusion that I’m going nowhere fast. Or should I throw the damn box out of the window and continue the daily fight to prove that putting people in boxes – no matter who they are or what they do – is a very outmoded way of thinking?

At Rolling Around In My Head, A Pop Quiz by Dave Hingsburger:

Clearly there are two ways to view every situation. I am wondering about all of you. Was the curtain a thing designed to give privacy or was it something which indicated the hiding way of shameful movement?

New Zealand: Government Bullying Must Stop by Red at Walking is Overrated:

This bullying of innocent families (who, let’s be honest, have enough on their plate) must stop. The Government is relying on the apathy, relative inertia and fear of the disabled community to make life hell for the people who deserve it least. No other group in society is so reliant on the Government from birth as people like myself who are born with a disability. We must support each other, and band together to tell whoever is behind this vendetta against good, hard-working families who are dedicated to their kids, that enough’s enough.

Singapore: Call for awareness on mental health issues at TODAYonline:

Associate Professor Fatimah Lateef said: “It is also significant that there was another follow-up survey (to the one done in 2004) that showed 37 per cent (of those surveyed) said even if they had serious mental health symptoms, they would not come forward to seek professional help because of the fear of stigma.”

Canada: at The Standard, City of St. Catharines plans for an inclusive election experience:

“We looked at everything from the Facilities Accessibilites Design Standards checklist, the updated building code and for accessibility, said Karen Ellison, the city’s election co-ordinator.

“We’re trying to make this a superior experience.”

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Canadians: Tell Your MP To Vote for C-304

One of the ways I entertain myself on the bus is looking at houses and apartment complexes we pass and deciding whether or not we’d ever be able to live there. “Hmm, that looks like a ramp could be built to the front door.” “Wow, that’s a useless step that could be taken right out. Is that there for decoration?” “Damn, I hope no one in that apartment building ever breaks a leg because that’s never ever going to be accessible to people who can’t climb a flight of stairs.”

Finding housing is one of the main challenges facing people with disabilities and their families. Don and I spent months looking for an apartment building in Halifax that didn’t have “just a tiny flight of stairs”. I’ve talked to people with service animals who have repeatedly struggled with being refused housing for having a “pet”, even though such refusal is illegal. Mia Mingus, Crip Chick and their supporters have been documenting their attempts to find accessible affording housing.

On top of this, finding affordable housing when one or more members of your household have a disability can be incredibly difficult and daunting. Disability is expensive, even with Canada’s patch-work attempts at assisting with the many and varied costs. Assistive technology and its upkeep is costly. Medications are costly. Having in-home assistance is costly. “Special” foods that are necessary if one has any dietary restrictions are costly. Transportation, adapted or otherwise, is costly. These bills add up, and trying to adapt or locate accessible housing on top of it can lead to hopelessness and despair. (Certainly it did when Don and I tried to find accessible affordable housing in Halifax.)

Next Wednesday, October 20th, Canadian Members of Parliament will be voting on the Private Members Bill C-304, “An Act to ensure secure, adequate, accessible and affordable housing for Canadians”.

This Bill has been pretty much off the radar for anyone who isn’t on poverty-rights mailing lists – a search through CBC, for example, finds only two hits, one from 2009 and the other in a 2010 blog entry that mentions it in passing at the end. This isn’t particularly unusual, since Private Members Bills, especially ones supported by opposition parties, don’t really get a lot of attention because they don’t often pass.

At the same time, though, this is the problem. This bill explicitly talks about housing as a right. It explicitly talks about housing for people with disabilities. To quote:

“accessible housing” means housing that is physically adapted to the individuals who are intended to occupy it, including those who are disadvantaged by age, physical or mental disability or medical condition, and those who are victims of a natural disaster.

It is so rare to see any bill in parliament that acknowledges disability, let alone one that actually talks about housing needs. It would be great if we could make some noise, if we could make it clear to our Members of Parliament, our elected representatives, that we as Canadians care about accessible and affordable housing needs, so even if this bill doesn’t pass, the next time the topic comes up our MPs know: This is something that Canadians want addressed.

The people behind Red Tents have planned a National Day of Action in support of Bill C-304 on October 19th. Their main event is in Ottawa, but I know there are other events planned around the country: Halifax’s event is all day Saturday and Sunday, for example, and a quick internet search found events in Winnipeg and Vancouver as well.

I would also recommend contacting your Member of Parliament between now and Wednesday to let them know that you support Bill C-304. Your contact with them doesn’t have to be long – mine was only a few sentences – but let them know that you support accessible affordable housing in Canada, not only for people with disabilities, but other groups that are also included in this Bill. You can find the contact information for your Member of Parliament here, but be aware that, like all Government of Canada websites, this one may not be accessible to screen readers. Another option is to use Make Poverty History’s email form to contact your MP.

For more information:

Here is the text of the Bill, in both English and French.
Open Parliament has all the debate on the Bill in a handy searchable format.
The Council of Canadians with Disabilities has a history of the Bill.
Centre for Equality Rights in Accommodation has details as well.
Red Tent’s details on the Bill.

Recommended Reading for 14 October 2010

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.

Crazy Mermaid’s Blog: Mental Illness Medication Side Effects

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

Diary of a Goldfish (Thanks, Deborah, for sending this in!): Coming Home Undefeated

But it also helps that I am choosing to live with them now, because it is a sensible and practical thing which I actually want to do, not because I don’t have any other options. And it helps a very great deal, that this situation is not permanent. I think it would be a lot harder without plans for the future.

Deaf Echo: It Gets Better. It Really Does. (Thanks, codeman38, for the link!)

A few hours later, I received an email from some guy named Terrence, who told me he had just finished captioning the clip. I guess I’m a little slow these days, because I made no connection between Terrence and Terry.

That’s right. Terry, Dan Savage’s husband, took time out of his day to transcribe their video clip, figure out the program, and upload the captions so that gay deaf kids could have access.

Because. It. Is. Just. That. Important.

Penelope Friday: Read About Cost to the Poorest  of the Newest Welfare Reforms (Thanks, Rosemary, for the link!)

And explain patiently to me that if a family is earning £44000 then they don’t need child benefit. Even if it is the father who earns the money, and the  mother who may depend on the child benefit to have any money of her own (which yes, is often the case, even these days). When women have been able to use their years of claiming child benefit to count for contributions to National Insurance, and now will presumably lose that benefit alongside the present money.

Disability Scoop: SNL Offers Apologies For Disability Cracks

After repeatedly mocking New York Gov. David Paterson for being blind, “Saturday Night Live” used the governor’s appearance on the show’s season premiere Saturday to make amends.

During the show’s “Weekend Update” segment, the real Paterson made an appearance to take some jabs at Fred Armisen’s impression of him and set the record straight.

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.


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.

Let’s Bust Some Myths: Depressed People Are Always Sad or They’re Faking!

Last year, after the incredibly scientific method of “looking at Facebook photos”, Manulife Insurance Company decided that Nathalie Blanchard wasn’t really depressed, she was just faking it, and thus cut off her disability-related funding.

Mix up a few details, and Blanchard’s story is a pretty common one. Whenever I talk to people who are currently living with long- or short-term depression, or have lived with it in the past, they tell me the same story: Friends thought they were faking because they managed to get out and have a good time. They laughed at a joke once and everyone decided they were “over” their “funk”. They didn’t act like stereotypes of depressed people, so they must not actually be depressed.

Woe, and all that.

This is what short-term depression was like for me: I spent four months getting up, going to work, doing my job quite well, eating at work, coming home, feeding the cat, lying down on the couch, falling asleep, and waking up to do it all again the next day when the cat bit me to remind me that I had to feed him. I didn’t answer the phone. I didn’t go online. I didn’t eat when I wasn’t at work. I didn’t go into my bedroom. I enjoyed my job, and was often bubbly and vivacious at work, and while everyone outside of my job figured there was something up, everyone I worked with thought I was great fun and having a lovely time.

This is what short-term depression looked like for my friend: She spent a few months being aware of every possible way she could kill herself in a room. She was really angry and yelled at people a lot. She would go for long walks in the dark and wonder if someone would just hit her with a car and be done with it. She cut off most contact with her friends and spent as much time as possible alone. She was told that she should “get over it” – whatever “it” was – because everyone gets “down” sometime and she was just being a drama queen.

This is what short-term depression looked like for another friend of mine: He didn’t feel like doing anything, so he didn’t. His doctor encouraged him to go out with friends, so he went out with friends, and laughed when other people laughed and acted as normal as he could. Sometimes he’d have a really good time, and then he’d feel bad because if he was having a good time, he probably wasn’t depressed, and that meant he was just a horrible person, so he’d go back into his room and not do anything because otherwise he was bad, and then the doctor would encourage him to go out and the cycle would begin anew. But most of the time he just didn’t feel much of anything. People told him he must be getting over everything because otherwise he wouldn’t be getting out.

Depression can be sitting alone in a room being sad or down or feeling empty and alone. But when this is the only thing that people think of when they think of depression, not only are there cases like Blanchard’s, but there is pressure on the person with depression, from friends, family members, co-workers, even themselves, to look “depressed enough”.

This stereotype can also lead to people with depression delaying seeking assistance. When I was depressed, I didn’t think I was really depressed, because I wasn’t sad. I wasn’t crying. I just didn’t want to talk to anyone. At all. Ever again. But I just knew I wasn’t depressed because I didn’t want to die. It took me many months to get any of the help I needed, and many of my friendships were irreparably damaged in the meantime.

This stereotype can also lead to more social isolation for someone with depression. If one needs to “act depressed” in order for people to take depression seriously, that can lead to sitting alone even if sitting alone isn’t what one wants to be doing.

I can’t tell you how people will behave when they’re depressed because, even when depressed, people can and do make all sorts of choices. They may do any of the things I’ve referred to here, or they may do something else entirely. If you think you’re depressed, I encourage you to do what you need to do to get through it, and I hope you find the help you need to recover.

For your reading enjoyment, a “Things People Say To People With Depression” Bingo Card. It looks like it was originally posted by inbar–1423 on Tumblr. The link is to one with the image described.

ETA: Actually, the bingo card was originally created by YouKiddinRight on Livejournal. Thanks for the correction!

Today in Journalism: You Used the Wrong Lede

In Houston, an autistic student is being denied accommodations and his parents took the school district to court to fight. However, they ran out of money and were forced to drop the suit. The student, Chapuka Chibuogwu, remains at home, not receiving an education, because his parents didn’t have the financial clout to pursue his legal rights. This is a story that plays out in communities across the United States every day, with school districts pouring money into fighting suits filed by people who are only asking for the accommodations they are entitled to under the law.

Enter the media, which decides to frame this case in a number of, shall we say, interesting ways. Chibuogwu’s parents are immigrants, and there’s a heavy focus on the ‘broken dreams’ narrative going on here, with a side of ‘all immigrants can succeed if they try hard enough’:

Dreams brought Kenneth Chibuogwu to America and in time determination brought many of those aspirations within reach.

“I worked hard. I came to this country with nothing,” says Kenneth.

This is a common element I see in stories about problems immigrants encounter in the United States. There’s a myth here that this country welcomes ‘the right kind’ of immigrants, people who work hard and keep quiet, and these stories frame problems as simply personally unfair, rather than as evidence of more systemic issues. They remind immigrants that they just need to try and they will succeed in the United States, since obviously things like racism don’t present any obstacles at all to members of the immigrant community. These stories present the United States as a fundamentally fair, free place, as the pinnacle of human achievement, and makes sure to grab pull quotes to reinforce this:

“There was nothing I could do but cry because I was so shocked that such a thing could go on in this country,” added Neka [Chibuogwu’s mother] of the repeated conferences with Alief administrators ending in stalemate.

In this case, the school district turned around to sue the parents to demand repayment of the legal expenses it incurred fighting the original suit, and when it lost, it appealed. This isn’t personally unfair. This isn’t about broken dreams. This is evidence of a systemic problem. When a school district is so opposed to accommodating students that it retaliates with countersuits when people attempt to get the district to comply with the law, that’s indicative of deep, sustained ableism.

And, of course, this article includes lines like ‘…a child who will spend each and every day of his life challenged with autism.’ Never is Chpauka Chibuogwu himself represented, except as a shadowy figure at the fringes of the story. Interviews with both parents are present, but he is firmly relegated to the sidelines.

This quote is illuminating:

“What they are trying to do is send a chill down parent’s spine about advocating for their children,” says Louis Geigerman, president of the Texas Organization of Parents, Attorneys and Advocates.

Note that Geigerman doesn’t say ‘this case is being used to threaten disabled students who need accommodations.’ Not ‘this case is designed to send a clear message that disabled students are not deserving of accommodations,’ not ‘the fact that this school district is fighting this hard to deny accommodations is illustrative of some serious problems with our education system.’ No. It’s about the parents.

Now, obviously, a child being denied accommodations in school is probably going to have trouble self-advocating, for a variety of reasons, ranging from ageist attitudes to perhaps not having access to information about self-advocacy to being around people who refuse to communicate on the student’s terms. So, clearly, parents play an important role in securing accommodations for disabled children and in forcing school districts to comply with the law. However, the complete erasure of the student in this case, and in most cases like it, is really frustrating. It’s a reminder that people with disabilities are defined by the people around them, rather than existing as individuals.

The only direct reference to the student is this editorial line thrown in at the end of the story:

As for Chuka, he’s now fourteen, attends no school and for five years hasn’t received a single minute of the free and appropriate public education that is his right.

That should be the centre of the story. The denial of education to the student should be the focus. The fact that the school district is violating the law should be the focus. Persecuting his parents with lawsuits is definitely part of the story, and it’s an important part, since the decision to attack his parents for fighting for accommodations is illustrative of the way the district views disabled students, but the story isn’t framed that way. The story is framed as a hardship for the parents, with the student as an afterthought. ‘As for…’ is the line you use when you are making a throwaway comment. This student is not a throwaway.

Recommended Reading for Wednesday, October 13, 2010

Description is below.
Black and white advertising image. On the right is a man standing behind a podium that has US flags, his eyes covered with SLOGAN OBSESSED. On the right is the text: Labels get in the way. Disabilities rarely do. Learn the truth. Think Beyond The Photo courtesy of Kate in DC.

A few signal-boosting calls to action that people, especially those in the US, may want to participate in.

Penny Reeder at Abled Body: Share your Smart Phone Strife with the FCC

And one other thing, I don’t want to pay any more for my smartphone than anybody who has a Blackberry, Droid, or iPhone. I don’t believe I should have to pay extra for a screen reader, like TALKS or MobileSpeak. I don’t mind paying for apps that maximize my capabilities, like GPS or the Kindle app, because everybody pays for those. But everybody doesn’t pay extra for the opportunity to read what’s on the screen!

When I go to meetings with sighted colleagues, I find they are connected in real-time to their smart phones. Ask them a question like, “What does a First Class stamp cost?” (I can never remember…), or “What should the temperature of a medium-rare burger be? — and they can respond, literally, in seconds! That’s because they can see the screen, so they don’t need spoken output to access the information, giving them immediate access to answers.

There’s more information and how to contact the FCC to discuss your accessibility-related concerns at the post.

Steve Spohn at Abled Gamers: Sony’s new Firmware stops disabled gamers from playing PS3

Mad Catz, makers of many PS3 modded controllers, supplies the circuit boards to Broadened Horizons for several of its accessible controllers. These controllers are responsible for allowing severely disabled gamers with no dexterity or hand movement at all to use their PlayStation 3. Normal OEM controllers require lots of finger movement and hand strength while Broadened Horizons’ controllers allow for little or no movement at all.

Suddenly, and without warning, several of these motor impaired gamers were locked out of their favorite activity.

Steve provides information about how to contact Sony and raise concerns with them directly.

Blog Posts:

Steven M. Schwartz at the Emperor Has No Toque: “A Demographic of Silence Living With Mental Health Stigma”

Silence when it comes to mental illness is a killer, a killer of self esteem, hope, and emotional safety. Silence mixed with stigma is painful and is a cause for those living with Mental Illness to separate ourselves from the world around us. Rarely does a person living with mental illness speak out to identify with or protect others traveling down our own road, because the fear of being stigmatized by others is a constant shroud that covers us. We have all faces stigma, either self imposed or from a external source, both feed each other and keep us in so many ways from reaching our potential.

Holy Gray at Don’t Call Me Sybil: Speaking of Crazy

One thing that struck me when reading RMJ’s post was that, like the mythology that surrounds Dissociative Identity Disorder has roots in the truth, most of those negative connotations of the word “crazy” spring from reality, however distant. In light of that, I understand why Natasha Tracy and others choose to embrace the word. Why not call a duck a duck? The problem as I see it is that while most of us reserve the word “duck” exclusively for referencing actual ducks, we don’t use “crazy” in the same way. And it doesn’t matter whether it’s used in positive or negative ways. If, from this day forward, we all used that word only to mean (1) stunningly awesome, or (2) mentally ill, it would still irk me. Because if your boyfriend is crazy hot, DID isn’t crazy. And if DID is crazy, your boyfriend isn’t crazy hot.

Laura Hershey at Life Support: My Wheelchair, My Body, Myself

For that’s exactly what this felt like to me – an assault. It was a direct, physical affront to my person. This man wasn’t just messing with some piece of equipment. He was interfering with my mobility, my power to position myself, to go where I want. My wheelchair is a part of my means of being in the world. In other words, it was part of me that he grabbed – my wheelchair, my body, myself.

Would anyone else recognize this? If I had tried to charge him with assault, would the legal system have supported me? Were other passengers aware of the depth of this violation? Or did they accept his statement that he was “helping” me?

Writer in a Wheelchair on Disability Voices: Virginia Ironside’s Comments on Sunday Morning Live

Her take is that it’s a moral thing and that it’s to be done to prevent suffering. She does then go on to say that there are millions of disabled people who live “Marvellous” lives but there are also thousands of millions who are suffering and not live no kind of life.

She’d do it to a child she really loved and she doesn’t know any mother wouldn’t. I personally am very glad that according to Ms Ironside’s views my own mother can’t love me and must be a terrible mother.

WHEELIE cATHOLIC: Independent Living: Planning Pet Care

I do have to change my cat’s diet and routine a bit. One thing that is always time intensive is when new tasks get added to the schedule around here. I have a limited number of care hours. Anything that goes over those hours gets added to what I have to do with adaptive devices. That can drain energy I need to work.

So I start by trying to figure out ways to do the new tasks using assistive devices. If I can’t or if the energy it will take won’t work, I add it to what others do and have to pick out something they are doing that I can take on. There are only so many care hours and since I also use them also to help me get my work done, it takes a lot of planning and resourcefulness on everyone’s part.

I Love Policy

It’s true. I am a policy wonk. I am endlessly interested in it. I read about it, think about it, talk about it and … write about it. (As in, what I’m doing right now.) And I do all of this because I think it’s immensely important. Crucially important. Vitally important.

Public policy is how the government – whether local, state, provincial, federal, or any other level – takes action on a particular issue. It covers a whole huge range of potential state actions – allocating and spending money, setting and enforcing professional guidelines and standards, creating agencies and staff, structuring tax incentives, even defining what constitutes criminal behavior. That’s an extremely big category that clearly has an enormous and unparalleled effect on the world.

Public policy not only drives state and governmental actions, it also has enormous influence on private sector actors. Tax policy can encourage specific areas of business, grants can encourage specific methods or practices, and governments both licence and regulate businesses. This combined effect on public and private actors means that to my mind, changing public policy is the quickest and most effective way to change things for a big group of people, all at once.

Policy touches almost everything we do and everything with which we come into contact. Right now, I am sitting on my bed, the mattress of which complies with regulations to prevent it going up in flames. I am wearing a shirt made in the United States by workers subject to minimum wage laws and industrial safety protections. The US shirt manufacturer is protected from competition from international producers by trade tariffs and taxes. The soda I am drinking displays nutritional information pursuant to federal regulations. The internet I am using is regulated by the Federal Communications Commission. Even the air I am breathing is affected by pollution standards and the decisions to grant or deny permits to things like coal processing plants. Even my kitty is included – she’s protected from abuse by criminal statute and, where I live, is protected from declawing. And that’s just scratching the surface of all of the policies surrounding and affecting me right this second.

There are, of course, a lot of other factors and forces that influence how people interact with the world, both as individuals and in groups. There’s huge effects from family, religious, cultural, and ethnic beliefs and traditions. Then there’s a myriad of individual differences – the things a person reads and watches and talks about and is talked to about, for example. I would argue that each of those things could also be influenced by government policy – like how the private movie ratings system created as a reaction to public regulation prevented me from seeing R movies until I was at least 16, or what books my local public library system bought and so were available for me to read. I’d also argue that individual preferences and differences are a lot less important than public policy in determining whether an area has a functioning health care system.

There are obviously a lot of difficulties with public policy. First, it’s mainly done by politicians, so political climate and general popular opinion can limit the range of what policies can achieve. For example, the United States could never have created a government-run nationalized health care system given the current makeup of our decision makers. Second, achieving specific goals through policy can be kind of complicated and difficult – if you were the government and wanted to “fix the education system,” it’s not exactly clear what specific steps would reach that outcome, even if we could agree on what a good education system would look like. Third, the differences between a policy as carefully written down and a policy as actually implemented can be vast, so a great policy may end up being too difficult or complicated or expensive or just impossible to implement, or may end up being significantly watered down.

At the end of the day, though, policy is literally life and death. Whether a mentally ill teenager gets tased or shot by a police officer depends on law enforcement policy, training, and management. Whether a PWD can afford and access the medications and equipment they require to live. Policy determines how and why and for how long and under what circumstances people are institutionalized. Whether and how they are protected from abuse and neglect from caretakers and family. Whether and when and how they have children.

So in the coming weeks, I’ll be writing about policy. Good policy, bad policy, and everything in between. Policy often doesn’t feel as sexy or gripping as a lot of the other topics we discuss here, but I’m hoping you’ll find it as interesting and important as I do.

Recommended Reading for October 12, 2010

Darshak Sangavi at Slate: Should you crowdsource your medical problems?

To be sure, many patients with complex or poorly understood medical problems like amyotrophic lateral sclerosis congregate in large virtual communities such as PatientsLikeMe, where they share details of their medical treatments and symptoms with each other—and occasionally even launch their own unregulated and informal drug trials. These communities provide some helpful information and support for many people.

brigid at Feminists With FSD: On the FSD hierarchy and why it hurts all of us

A lot of support groups, both on and off the web do not want to recognize women with conditions such as endo as legitimate cases of fsd. We don’t have vulvodynia, vulvular vestibulitis, or vaginismus so we couldn’t possibly go through the same things as women with those conditions. I’m here to change that misconception.

Michael Janger at Abled Body: Web Content Accessibility Law Needs More Brawn

However, the newly accessible video content is only the tip of the iceberg. The major broadcast and cable networks that are covered under the new law produce about 100,000 hours of video content a year from their TV programs. On YouTube — which is not covered by the new law — almost 13 million hours of video content are uploaded annually, and that number is increasing. Over 99% of this Web-exclusive content is not closed-captioned or video-described, nor will it be required to be, under the new law.

Flash Bistrow at Where’s the Benefit?: DLA and work? Who is confused here?

The government has already said that the new medical test is intended to reduce the number of DLA claimants by 20%. But I am not sure how taking benefit from 1 in 5 people will “reduce dependency” (on what?) and “promote work” – indeed, several of the people quoted in my previous article about DLA would have to stop working if they lost that benefit, because they do not have enough energy or capacity to both care for themselves AND go to work. If the government think that turfing disabled people off DLA will suddenly give them the capacity to work, they are very much mistaken. It will just disable them even further.

Sam Roe and Jared S. Hopkins for the Los Angeles Times and Chicago Tribune: The final hours of Jeremiah Clark (major trigger warning for discussion/descriptions of abuse and neglect)

Jeremiah is among 13 children and young adults at the North Side facility whose deaths have led to state citations since 2000, a Tribune investigation has found. Some of these deaths, records show, might have been prevented had officials at the facility taken basic steps, such as closely monitoring residents and their medical equipment.

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.

Accessibility Is So Much More Than Ramps

There’s a common idea I encounter among nondisabled people when it comes to discussing accessibility and making spaces accessible to all users. That idea is that as long as there’s a ramp, a space is accessible. That accessibility is solely about ramps, and nothing else, so once you’ve got a ramp in place, you’re covered.

This is, as we know, not true. Not even for wheelchair users; a ramp is only the beginning of accessibility and it’s useless if, for example, all the doorways in a space are too narrow to allow a chair to pass. It’s not helpful if the front entrance is ramped, but as soon as you get inside, there are steps up or down to another area of a building. Or if the bathroom in a space is too small and cramped to use safely. Or if, hey, someone decided to put all the light switches ridiculously high up on the wall.

The universal symbol of accessibility is our old friend wheelie blue:

The 'wheelie blue' symbol of accessibility, an outline of a stick figure in a wheelchair against a blue background

This symbol reinforces the idea that accessibility is primarily about wheelchairs. Now, granted, it would be functionally impossible to come up with a symbol representing all disabilities and all accommodation needs. The goal with symbols like this is to keep them simple, clear, and communicative.

But contrast that with this:

The icon says 'Disability Advocacy: Keeping Doors Open.' Image is of a room, with a floating brain, hands Signing, wheelie symbol, and Braille text

This icon shows the familiar wheelchair user, but also hands Signing, representing the d/Deaf community. And Braille. And a brain, which to my mind (ha ha) reads as a representation of neuroatypicality, for people with intellectual disabilities, for people with mental illness. Suddenly, the concept of accessibility is widened and the concept of different bodies and minds is represented here, reminding the viewer that accessibility goes beyond the ramp.

Wiscon’s accessibility policy is something we often point to here as an illustration of expanding the definition of ‘access’ and trying to work with people with many different kinds of disabilities to make a space comfortable and welcoming for them. It addresses issues ranging from wheelchair-accessible hotel rooms to the need for a quiet space to allergies. It also expands the conversation to talk not just about how spaces can be made accessible, but how people in those spaces can contribute to accessibility:

Offer help–don’t assume it’s needed. Most of us are taught to “help the handicapped” but not “does this person want or need help?” If you think someone needs assistance, just ask. If they say yes, don’t make assumptions; instead listen to the details of what the person with disabilities wants. If they say “no thanks” don’t be offended. What might look overly complicated or inefficient can be what that disabled person finds works best.

Wiscon also thinks about how the programming, the structure of the event, can be adjusted to create accommodations. Making more space between panels, for example, and providing information to attendees about which rooms have florescent lighting. Three facets of accessibility are being considered here: The physicalities of the space, the people in it, and how the programming inside that space is organized. That goes far beyond the way most people conceptualise ‘accessibility.’

Getting people to expand their minds when it comes to accessibility is more complicated than just getting them to think about the fact that there are issues beyond wheelchair accessibility. It also requires people to think about, discuss, and acknowledge conflicting accommodations and how to balance the needs of multiple people with disabilities. Some accommodations automatically exclude people from spaces. Conversations about conflicting accommodations are uncomfortable because we want to make spaces welcome to everyone, but sometimes there’s a fundamental conflict; take, for example, people who need to use essential oils to manage their conditions, and people who can’t be around strong odors or alcohol-based compounds.

Wiscon’s policy includes a statement and discussion about conflicting accommodations, something rather unusual. I haven’t encountered many discussions about conflicting accommodations in the mainstream, although one place I do spot them is online, where some sites have options like switching between a light on dark/dark on light theme or have other configurable options designed to address various disabilities.

Making spaces accessible requires thinking about a lot of things; about how people with a variety of disabilities will interact with a space, about how people will interact with each other in that space, and, often, how to manage accessibility with limited budget options. Many people trying to design accessible spaces may also not really know how to go about it, and they’re not sure about who to turn to. As a result, we end up with situations where spaces are not accessible because no one bothered to ask for input, instead trying to anticipate needs and failing. Often, the burden falls on people with disabilities to demand access and to provide education about how to make spaces accessible, even when that information is already available, with a little bit of searching.

Accommodation should also be provided automatically, without needing to be something that people specifically have to request and ask for. And people need to be provided with information about available accommodations, as this story Anna linked me to recently points out:

One barrier PCR finds is that access officers in universities tend to ask students to tell them what services they require rather than telling the students what is available. The student is at a disadvantage before the first lecture even begins, as they may not know about all the services available.

Considerations about accessibility and accessible spaces should be on the forefront of the mind of anyone tasked with building, arranging, or coordinating a space, not just people who need accommodations, and people need to expand the way they think about accessibility, actively seek out and solicit information to make the spaces they control better. People often seem to think that accessibility is something you add when someone asks for it, which presumes that people with disabilities will always ask for it, when instead, more commonly, we go ‘oh, that space isn’t accessible or there’s not clear information about accessibility, so I won’t bother attending that event.’