Category Archives: disability activism

Signal Boost: The August Edition of The Disability Blog Carnival is Up at Brilliant Mind, Broken Body

Reader Astrid informs me that The Disability Blog Carnival is up and on the go for August at Brilliant Mind, Broken Body, courtesy of Kali.

This Month’s theme is “distance”:

I think distance is an interesting concept because we use the same word to mean so many different things – the space between ideas, the space between here and there, the space between you and me, the space between us and them, the space passage of time creates, the difference between where we started and where we have gotten to, the space between understanding and not. Intentional spaces, ideological spaces, physical spaces, metaphorical spaces. It’s a word that I think sometimes encompasses much of the disability experience, because there always seem to be more distances we have to deal with.

Please swing on over to Brilliant Mind, Broken Body and give Kali some love, some support, some kudos, and maybe an Internet Tradition for the hard work.

Recommended Reading for 23 August 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.

The Guardian’s Comment is Free: Mental disability, state power, and the capacity to decide

The judge faced a hard decision and his judgment shows the traces of his ambivalence. In the end, he ruled that Mrs A lacked the capacity to make decisions about contraception, citing as the crucial factor “the uneven relationship between Mr and Mrs A”. Although Mrs A herself indicated in court that she did not want contraceptive devices, the judge found that this decision “was not of her own free will”. But at the same time, he refused to grant the local authority the power it sought to administer contraceptive devices involuntarily. In practice, granting such a power would have authorised the police to enter her residence, sedate her if necessary and remove her to hospital for conceptive measures.

Chicago Tribune: University of Illinois opens new dorm for students with disabilities (Thank you to Lassarina for the link!)

As much as moving into Nugent Hall was a remarkable accomplishment for Rozema, it also was momentous for the U. of I. Already recognized as a front-runner in disability services for students, the U. of I. dorm will allow students with the most severe disabilities — all use motorized wheelchairs or scooters — to get the personalized care they need while being integrated with typical students.

WUSA9.com: Hearing Impaired Woman With Service Dog Told To Leave Mall

“He said dogs aren’t allowed in the mall.” Denise says she never before had a problem bringing her service dog Chloe, into the mall.

On Monday, August 9, “a security guard pulled up in his car and stopped and told us we couldn’t bring a dog in the mall.”

Denise has a cochlear implant but says she still had a hard time hearing the guard. She says she tried to explain the law and proceeded inside to shop. About 30 minutes later, she was approached again by the guard. He “demanded that we leave.”

On Saturday, it happened again in front of her daughter and her husband, Terry.

CTV News: B.C. cop who shoved disabled woman gets new assignment

VANCOUVER — A Vancouver police officer caught on video pushing a disabled woman down to the ground in one of the country’s poorest neighbourhoods has been reassigned.

The 65-second video was uploaded to the web last week and appears to show a woman trying to weave her way through three male officers on the city’s Downtown Eastside.

One of the officers then shoves the woman to the ground, before walking away. The two other officers do not intervene.

Via Change.org and from the USO: A petition to support wounded warriors as they return from war

The United States is a nation at war. Thanks to improvements in battlefield medicine and the use of body armor, men and women are surviving wounds that would have been fatal in earlier wars. While they have survived, their severe injuries have turned their lives–and the lives of their families–upside down, sometimes involving many surgeries, years of therapy and a lifetime of support.

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.

On Centring Caregivers in Disability Discourse

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions.  The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and Feministe]

…And At This Point, I Don’t See It Stopping Anytime Soon

Courtesy of amandaw I bring you this stellar article that once again rubs in my face how brilliantly miserable the VA is scratching the surface of realizing what is wrong with they way they even see women veterans. If you read along carefully you can even see the lightly sugar-coated condescension artfully woven in TIME writer Laura Fitzpatrick’s story. It really is a piece of work, from the dismissive way she re-counts the testimony of the “presumed” treatment of a victim survivor of sexual assault at the hands of a medical professional (because they NEVER do THAT) down to the detailed description of the very girlie attire of the staff at the impressively mostly women-run facility in Palo Alto. I crave to read the way a man’s shoes click-clack on a hospital hall’s floors in such a manner. But it is a very cliche description etched in the halls of descriptive-writing history, INORITE, so who am I to argue with the laws of good writing. I am, after all, only an amateur.

The news isn’t that the VA is failing women veterans. I’ve known that for quite some time. Really, I have. I have encountered some of the treatment described to some degrees first-hand:

I remember having to hunt around for a toilet in an ill-fitting paper gown at my own exit screening, past several other open, occupied exam rooms. I was the only woman there. They had no sanitary napkin to offer me and it was an embarrassing scene trying to find a place where I could insert a tampon. I was fighting back tears when I finally found a (presumably) unisex bathroom.

So My Dear Friend Ms. Fitzpatrick’s dismissal of Anuradha Bhagwati’s story, the one she gave as testimony before the House Committee on Veterans’ Affairs is ill-received. It isn’t too far-fetched for me to imagine the way she recounts “the ham-handed manner in which a male gynecologist, upon being told by a patient that she had been sexually assaulted, left the exam room and — presumably to beckon a female staff member — yelled down the hall, ‘We’ve got another one!'”. I can easily see the inept professionals at the inadequate facilities just stumbling over how to even grasp a way to provide basic courtesy to a patient who isn’t like them. And failing. Miserably.

The news here is that they seem to have no idea how to fix it, and no set, immediate time line in mind for seeing progress. Sure, Secretary of the VA, Eric K. Shinseki recently, at a forum at the Women in Military Service for America Memorial in Arlington, Virginia, has said that he hopes to have the VA ready to serve 100% of veterans in 25 years, but what is going to happen to this generation of women veterans who are already being ignored? To the women veterans of the wars past who have been fighting for help all along already?

Because their concerns are already being swept aside. You can already see as things like their urinary-tract issues being categorized as simple “gender differences”, because women react to the desert differently. Sure, possibly. I’ve seen this intimated a few times. People looking to explain away womanly behavior in high stress situations. Oh! They didn’t want to stop the convoy! Well, why is that? Maybe because we know that women are far more likely to be killed by their fellow servicemembers than by combat in combat zones that they learned defense mechanisms, as confessed to by Col. Janis Karpinski. Women tended to drink less water, as little as they thought they could get away with, to avoid using latrines or having to stop roadside alone with men out of fear of sexual assault. And it killed some of them. If you remember, though, Karpinski was even dismissed as a woman scorned because of the Abu Ghraib scandal, anyhow, so we can’t win for losing. She was just ratting out her old boss because she got in trouble.

Some of it is true, though. Most of the VA’s 144 hospitals do not have the proper facilities to even offer privacy to non-men patients, let alone provide gynecological care, or as I mentioned above, pads. The TIME article notes a hospital in Salt Lake City which announced that it delivered its first baby this past October (the article mentions that its average patient is 78 and male), but the day after the little girl’s arrival they didn’t know how much she weighed (I cringe to think how much more they couldn’t provide) because they didn’t even have an infant scale.

Women veterans are spiking in numbers. They, funnily enough, are not the same as men. That means they are not the same as the average patient, such as that the Salt Lake City hospital are used to dealing with, and their health care with be different. Even if you line up the matching parts, the treatment for heart disease and blood pressure, to my lay knowledge, is not the same. The numbers have been growing since The Great War, and surged after we had the need to call the next one World War II. It took until 1988 for the VA to start providing even limited care to women veterans.

Today, women veterans in need of help from the VA are of an average age far younger than the average male veteran (for obvious reasons) and have different needs. They are at least twice as likely than civilian women to be homeless (with only 8 facilities in all the U.S. available to help homeless women veterans with children). They are likely to be mothers when they are. Many of them returning from combat zones — yes, combat zones, why do you ask? — are coming home to families and are more likely than their male counterparts to get divorced following combat connected tours. They are really damned likely to get asked if that is their husband’s or boyfriend’s shirt they are wearing, or asked for their husband’s social by a thoughtless agent on the phone. They are the forgotten in war. Doubly so if they served in a branch of the military that isn’t on the forefront of the public’s mind as “really the military” (as slave2tehtink has said, Aircraft carriers tend to not be zipped around by civilians, yo). Extra-specially so if you had a thinkin’ job, like “nuke” or “spook”, and your Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), or Military Sexual Trauma (MST) didn’t happen “In Country” (Iraq or Afghanistan), the only sanctioned places where these things can occur, you know.

It’s frustrating as hell. And while I don’t believe that the VA is intentionally forgetting about us, I don’t believe that they are doing everything that they can to make sure that it gets better faster.

And honestly, I don’t think writers like Ms. Fitzpatrick are helping. But maybe I am jaded and have been at this for too long. But the VA needs an overhaul, stat. Pretty words from the Secretary of the VA and promises that it will be better in a couple of decades just aren’t good enough.

National Association of the Deaf Videos

When writing in my own space, I tend to make a lot of jokes about how much I enjoy doing “history in the future!”, by which I mean a lot of primary sources are on-line. Last year, for example, I randomly put the name of one of the people I was writing about into Google, and out popped a bunch of articles he’d written about his theories on Deaf people in the 1860s, which drastically changed my thesis.

For those of us who like to highlight disability related history, the internet can be a huge boon. Whereas as little as five years ago, reading Susan Burch’s description of the Hotchkiss videos for the National Association of the Deaf would have been my only way of learning about them, various video-sharing websites (especially YouTube) allow for us to see these videos, and get a better idea of their impact and importance, for ourselves.

Transcript, as provided by pdurr on YouTube:
Description: John Hotchkiss is an older white man wearing a suit and signing for the camera.

Excerpt of Hotchkiss discussing memories of old hartford from the NAD Motion Picture Project
translation of excerpt by P. Durr – NOTE translation’s accuracy is not confirmed.

“Another time Clerc called a boy who had passed by his house asking, “Please tell (name sign of bent L handshape going downward from top of lips to bottom of chin indicating a beard) S-T-E-W-A-R-D to please have wood delivered to me.” “My pleasure,” the boy replied and went on his way. But this boy completely forgot about this message as his mind was set on playing. Thus, it totally slipped his mind to inform Steward (name sign) of Clerc’s message of his need for wood and Clerc never received any.

A few days passed and again Clerc approached this boy, tapping him with his walking stick and holding him by the shoulders. “I told YOU to PLEASE tell Steward to bring me wood and you said, ‘Ah huh, Yes, Yes, Yes’ but instead you went off and completely forgot. Darn you for forgetting.” and he went off in a huff. As days went by, Clerc would continue to bump into this boy and would always say “Darn, you’re the boy who forgot” (hand at mouth) and stomp off.

The boy was embarrassed and became weary of Clerc’s insults so he decided to go to him and asking his forgiveness for having forgotten to deliver the message to which Clerc let out a joyful laugh and said “alright, you are forgiven, you are forgiven, be on your way.” And with that they departed.

Context, of course, is important. Hotchkiss is telling a story about Laurent Clerc, who is considered the father of the US Deaf Community – for certain definitions of Community, which I will get to in a moment. Dr. John Hotchkiss himself is a very important member of the Deaf community, having been part of the first generation of Deaf students to attend Gallaudet University. Once he graduated he took up teaching, and was a passionate advocate for the continued used of Sign Language in teaching Deaf children.

In the 1910s, the National Association of the Deaf began making several films of Sign Language masters such as Hotchins, and they toured the country. While they were mostly seen by Deaf students, there were hearing students who also saw these ‘silent’ films, exposing them to “the beautiful language” as well.

These films were created as a means of combating the oralist movement (requiring Deaf people to learn to lip read and articulate verbally, a movement that also attempted to ban Sign Language in schools), as well as recording the history of US Deaf people. Looking at the present, the increasingly easy access to video technology is leading to a similar growth in easily accessible videos by and for Deaf people, many of them on YouTube.

What is not obvious from this one video but would be if you went seeking out the rest of the National Association of the Deaf videos from roughly this time period is that “the beautiful language” that they’re preserving is pretty much the beautiful language of white men with the means to attend Gallaudet University. Gallaudet accepted one class of women pupils, and then refused to accept any more for over a decade. Even afterwards, women pupils were discouraged from attending, because they risked “stealing” jobs from more-deserving men. As well, there was a great divide between white and non-white/people of colour in terms of Deaf education. There was a segregated Deaf school system in parts of the US, and Black Deaf schools developed their own form of Sign Language. You can read a bit more about this at the Black ASL Project. Historians like Susan Burch make it very clear that there was no attempt by white Deaf leaders to support Black Deaf people, and only limited support in the non-segregated school system of the North and Western US.

I like to highlight some things in disability history because I find it frustrating that, if you want to learn about the history of disability in a non-specialized context, you’re probably only going to learn the tragedies. I’ve taken classes that have talked about forced sterilization and the eugenics movement, both in North America and abroad, but never had a class that dealt with the foundation of the Deaf press, say, or the National Fraternal Order of the Deaf – even in classes that were about Fraternal Orders in the US. I’ve taken classes that have focused on the resistance of marginalized people, but somehow fail to mention decades of resistance by people with disabilities, and often fail to mention even the success of the Americans with Disabilities Act.

We have a history that is more than tragedy, that is more than the last 20 years of fighting. It is not all brave plucky fighters, and it is certainly not all wonderful people who had no prejudices and only celebrated good things. People with disabilities are people, and I think talking a great deal more about this history is part of the way we fight against stereotypes and the boxes people put us in.

Commenting note: I am, as I said, on Thesis Time right now, which basically means I’m hardly at all around. If you decide to comment, please keep commenting policies in mind, and I’ll do my best to keep up with them.

Celebrating Us: Notes for an address at the 7th Annual Simply People Celebration

John Rae is a disability rights activist in Toronto, Ontario, Canada, and a member of The Alliance for Equality of Blind Canadians. This speech was delivered by Rae on July 20, 2010 as part of the Simple People celebration, which is in turn part of Toronto’s Disability Pride.

Tonight is for us, and about us! Tonight is a time for us to celebrate our accomplishments and to redouble our efforts to bring about true equality for all persons with disabilities in Canada and around the world.

This year, Canadians with disabilities are celebrating Canada’s ratification of the UN Convention on the Rights of Persons With Disabilities (CRPD). While it may not provide us with a lot of new rights, it sets out in far greater detail than any human rights code or the Charter of Rights and Freedoms ever did what a truly accessible and inclusive Canada can look like, in important areas of life that are critical to our participation in the economic, political and social life of our communities – transportation, employment, education, communications, access to information, etc. The Convention also requires Canada to collect and disseminate data and to submit a comprehensive report to the Secretary-General of the United Nations within two years after ratification and every four years thereafter on measures taken, and civil society is to be directly involved in the development of these reports. This means involving us!

The development of this Convention traveled a unique path. It took the least amount of time of any UN Convention to be concluded, and it involved far more participation from civil society than ever before. That means involvement by us, and many groups representing persons with disabilities participated actively in the negotiations at the UN that resulted in this Convention. There are important lessons to be learned from having this kind of direct participation in developing any new initiative that directly affects our lives.

Last year, the President of the Alliance for Equality of Blind Canadians, Robin East, developed a new way of addressing our needs and aspirations. He coined the new phrase, “rights holders.” We are Rights Holders! What does he mean?

Too often, governments like to lump all of us, consumers, parents, service providers, etc. under the same umbrella of “stakeholders,” and while all of these groups may very well have a “stake” in the outcome of a new piece of legislation, policy or program, we are the ones most affected. We are different, and must see ourselves as “rights holders,” and not just another group of mere stakeholders. What this means is that we must occupy the primary and preeminent place at any table that is discussing anything that directly impacts our quality of life.

You are all familiar with the favourite phrase of the disability rights movement, “Nothing about us without us!” Now that Canada has ratified the UN Convention, it is critical that we rights holders participate as directly in its implementation as we did in its design, to ensure that it makes a tangible difference in the lives of all Canadians with disabilities, to make it become Canada’s national disabilities Act.

By contrast, the much heralded Accessibility for Ontarians With Disabilities Act (AODA) continues to move at a snail’s pace. After over five years, only one of the initial five accessibility standards has been issued as a regulation, though more are expected later this year. It is hard to imagine that Ontario is even close to being on track to achieve full accessibility by the far off date of 2025, and it is hoped that Canada’s ratification of the UN Convention will spur some renewed commitment and action to the AODA.

It is too often argued by representatives from governments and the obligated sectors that they “would like to do the things we wand and need, but these changes will simply cost too much.” We have countered that the real barriers are not cost, but a lack of political will and a question of priorities.

The Ontario Human Rights Code has covered persons with various disabilities since 1982. Governments, the public and private sectors have had over 25 years to make their premises, websites, products and programs fully accessible. How much more time do they need? If they have ignored their responsibilities and dragged their feet over all these years, stop blaming us – stop blaming the victims. It’s simply not our fault.

After the preposterous expenditure of an estimated $1.3 billion (that’s billion) on security for the G-8 and G-20 Summits, and countless millions of dollars on our involvement in the war in Afghanistan, persons with disabilities never want to hear the cost excuse ever again … never again! Resources are not unlimited, but whenever a government really wants to do something, it seems to magically find a way to finance its priorities.

So what am I asking you to do?

1. Write letters to the Editor of your local newspaper, raising disability issues;

2. Ask all candidates for Mayor and Council in the upcoming municipal election about their platforms, and what they commit to do to advance our agenda;

3. Get more involved in the disability rights movement. Join a group like the Alliance for Equality of Blind Canadians (AEBC), Citizens With Disabilities Ontario (CDWO) and sign up to receive updates from the Accessibility for Ontarians With Disabilities Act alliance, or find the consumer organization in your area that best represents your issues and ideas.

In closing, I want to mention just one more point. Many of us who have been on the front lines, in the leadership of our movement for many, many years are getting old and growing tired. We need you to get more involved. We need your energy, skills and new ideas. We cannot expect the system to hand us our rightful place, our history teaches us that it rarely does! Moving our agenda and achieving our goals is up to us. We must make it happen.

Some of you will be familiar with the phrase “Full Participation and Equality.” It’s an excellent phrase. It’s not a new phrase. It was the theme of the International Year of the Disabled Person (IYDP) way back in 1981.

Since then, we have come a part of the way up this road, but we still have far, too far to travel. Today, we seek legislation and new programs that will lead to that elusive goal, but today we must spend far too much of our time preventing the introduction of new barriers.

It’s time governments, the private and public sectors recognized our value, and commit to work with us to realize the IYDP motto.

We want our rights. When do we want them? Now!

Quick Press: Action For Access

Passed along to me via email is this downloadable and printable survey, Action for Access.

You go to the website, and follow the instructions for download. The survey can be taken to locations on the map, then matched up (to my understanding) with the online version, to rate local businesses and establishments in the UK on their accessibility.

There are instructions for following up on the information you provide.

If anyone is interested, or has tried this survey and followed up on it, I would be interested to know how successful they found it (or even how accessible they found the survey itself).

From Sea to Shining Sea: Bad Ass Disabled Vets Refocus Their Military Training

Military personnel learn to apply their earliest military training to many parts of their lives. From the first moments of boot camp our lives are broken down and that training is ingrained into our very being. We take that training with us long after the uniform hangs unworn in the closet and the neckerchiefs lie in the drawers. Even today, I can write a business email in all acronyms, because it is still the most formal and proper way I know. One time we “tossed racks” because Kid couldn’t find something and insisted it wasn’t in her room. I can fit many t-shirts in a drawer or suitcase, thanks to a certain Chief, who, incidentally was not my division chief, but who seemed to think the sun shone from my arse nonetheless.

For some, it helps to pull us through the unexpected twists that life hands us. I am sure I am not the only person who will endure more pain than is required before complaining because I believe it is expected.

For Marc Esposito, a 26 year-old Air Force Sergeant and member of a special tactics squadron until his humvee hit a roadside bomb, his training helped him focus trough the year of rehab at two separate medical facilities, including the Walter Reed Medical Center, where he re-learned how to walk.

Now he is using that focus — that training — to ride with Sea to Shining Sea, to raise awareness for the Special Operations Warrior Foundation for wounded veterans, and in his own words,”[T]o hopefully show any kind of disabled American you are still capable of doing amazing things […] and hopefully change the perception of what it means to be an athlete.”

Sea to Shining Sea is a group of 17 cyclists, most of them disabled veterans, who started the journey of some 4,000 miles from San Francisco on 22 May, by dipping their wheels in the Pacific Ocean, and plan to end it by dipping their wheels in the Atlantic in Virginia Beach on 24 July. They have averaged about 50 miles a day.

Some people don’t understand that the training doesn’t leave you. It isn’t something you take off, and in some cases, this is a very good thing. The drive it takes to recover, the intensity it takes to stare illness and injury head on, the nerve it takes to accept that your career may be forever ended or changed … all of that comes from the part of you that is broken down and rebuilt ahead of time. All those weeks, months, years ago when you step off the bus and dress to that line for the first time. They rebuild you up, and it becomes a life skill that you use to accept, use, and build upon.

And it allows you to meet any task head on, using whatever you have left.

Sometimes all you have left is enough and you have no other desire but to give it.

Because that is all we know.

We know to take what we have left, and give something back.

Sea to Shining Sea is nothing short of Bad Ass, and I am not doing them justice, because I have struggled over days to write this post. I have wept a little at what these people have done with what they have kept and done. I am so proud of them, and so humbled to know that they, through their hardest, darkest times, have pulled through because of a common link and have spun it around to something positive, and to something healing, and are finding a way to use it to raise a positive message for disabled veterans everywhere.

Thank you to s.e. smith for the link, because ou is always looking out for me.

Interpreters and Emergency Rooms

I recently came across a news article about a lawsuit by several d/Deaf or hard of hearing people who were denied interpreter services in emergency rooms. It sounds both infuriating and terrifying:

One deaf hospital patient in Jacksonville Beach said she was given a stuffed monkey instead of the sign-language interpreter she requested for hours. Feeling isolated, she finally asked nurses for something to hold.

Another said she thought she was being denied medical care because there was no interpreter to explain why they needed her to wait in a hallway at Baptist Medical Center South. She later learned hospital staff lost a list of sign-language interpreters her mother had given them.

A third woman couldn’t hear when emergency workers at Baptist Medical Center downtown called her name.

The three women are among seven hearing-impaired emergency-room patients suing Baptist Health Systems for violating the Americans With Disabilities Act by failing to provide qualified sign-language interpreters. The lawsuit was filed in federal court last week by Jacksonville Area Legal Aid. Legal Aid attorney Sharon Caserta,  who works with hearing-impaired clients, said the pattern of complaints at Baptist facilities from 2006 to 2009 indicated a breakdown in services that denied deaf patients full access to care.

She said the act requires interpreters or effective auxiliary aids to be provided if needed for communication with medical professionals. The U.S. Justice Department has interpreted the law to mean a one- to two-hour response time is reasonable after an interpreter has been requested, Caserta said.

In Northeast Florida, she said, that shouldn’t be an issue because of a half-dozen organizations that provide interpretive services and the proximity of the Florida School for the Deaf and the Blind in St. Augustine. But Caserta said her clients never got interpreters and, if they didn’t have friends or family with them, had to fend for themselves at Baptist facilities.

Many are now scared to return to Baptist or any emergency room, she said.

These problems are not limited to that hospital, or even to the United States. According to one survey in the UK, “70% of deaf respondents reported being unable to have access to an interpreter when they attended an accident and emergency department.”

These incidents would be bad enough if their impact was limited to the incident itself. Being denied the right to communicate in an emergency situation is beyond unacceptable. It denies people the right to understand what’s happening to them. It denies them the ability to consent to treatment or make any decisions or have any agency at all in their treatment.

Even worse, these incidents undermine the reliability and usefulness of the health system itself. As the article above mentions, many of the plaintiffs “are now scared to return to … any emergency room.” This is echoed by the UK survey, which found that “communicating with health care professionals was such a struggle that 28% of deaf people responding to one survey were left so confused and dissatisfied with their inadequate GP health care that they avoided seeking medical help.” These people have learned that the health care system is unwilling to communicate with them in their time of urgent need. Is unwilling to take the time or make the effort to treat them as autonomous people participating in their own care.

In a demonstration of intersectionality, the facilities and areas in the US that have the best policies and practices about providing sign interpreters to d/Deaf and hard of hearing people are those with good policies for accommodating people with limited English speaking proficiency. (I would expect the same holds true for non-US locations which accommodate folks who don’t speak the primary language.) These places have created an infrastructure where interpreters are available and staff are trained on how to access them, and they’ve prioritized communication access in their facilities.

Avoidance

Building on what Chally talked about in her post about doing fine, I wanted to discuss some of the disability aspects of my recent semi-absence. Sometimes I feel like thinking about, reading about, writing about, arguing about, disability issues can become overwhelming for me. I feel that there are so many problems – ableist policies and laws and governments and businesses and people and attitudes and media portrayals and interactions and opinions and splainers. And a horrifyingly large number of instances of people with disabilities being abused and battered and humiliated and ignored and erased and dismissed. Each of those things seems like an immovable stone that fit together to form a wall that is beyond insurmountable.

Even thinking about everything that’s overwhelming feels overwhelming. (And this, of course, is part of the effect of the kyriarchy – to be so overwhelming and monolithic that it forces conformity, punishes people for differences like being a PWD, and places immense pressure on them to conform as much as possible to the norm.)

So when this happens, I notice myself avoiding disability related topics. I keep posts on disability issues unread until they start building up in Google Reader. I somehow don’t get around to reading that article or book on disability activism I had bookmarked. Someone I’m around in a casual setting says the R word and I let it go by. I pass as much as possible for TAB and neurotypical – even to myself. I just ignore disability – in general and mine specifically – as much as possible.

I noticed that my avoidance started right around the time I started working on a work project related to domestic violence. Working in that area always makes me aware of how many people, predominately women, are subjected to horrifying abuse on a daily basis. In the past, I’ve had the same kind of overwhelmed/avoidance response to feminist issues, when it feels that the patriarchal structure is too entrenched and too powerful to fight.

In other words, feeling vulnerable about domestic violence and sexual assault makes me feel like I cannot risk being vulnerable about disability, so I try as hard as possible to ignore it. I know that I am doing this to protect myself. But I do not like that protecting myself means ignoring disability issues or feminism. That protecting myself means, to an extent, ignoring part of who I am. Not just in the way I present myself to the world, but even in how I think about myself in the privacy of my own head.

That makes me angry. It makes me angry that retreating into my shell is coping mechanism brought on by the infinitely-headed hydra of ableism and sexism. It makes me angry that a necessary reaction to the frustration of engaging in disability activism is to take a break from that activism and to momentarily stop identifying as a PWD. (Or as a DV survivor. Or as whatever else is making me a target for kyriarchical oppression.) Basically, I get angry that the kyriarchy works, that even my efforts to stop being hurt by it are intrinsically shaped by it. That my life is inherently a response to it. That I cannot seem to exist outside of it.

Fucking kyriarchy.