Category Archives: accessibility

Dear Imprudence: Getting It Right! (For Once!)

accessibility, activism, Dear Imprudence, justice, mental health, policy, social attitudes

s.e. smith recently passed on a question from a Dear Prudence column (3rd question down) that, well, actually gets things right. We were both pretty surprised! The question asked is shockingly similar to my own situation, but I swear I didn’t write in to ask it. The questioner writes:

I work in a social-services-related field and have bipolar disorder. I am open and honest about my diagnosis. … I have been having issues with one of our interns, who is in her mid-20s and pursuing a master’s degree in clinical psychology. On the surface, she is very pleasant. The problem is, anytime she and I disagree about something (which is often, because apparently she knows everything and I know nothing), she rolls her eyes, waves her hand, and declares that I am “just bipolar.” This is alarming to me because she intends to work with such populations, and though I can take it without becoming suicidal, many bipolar people can’t. Part of me wants to simply ignore her, but when I do, she continually asks me, “What’s wrong?” She is probably going to be with us for another year, and I want some peace and a little less condescension when I go to work.

Hey! I have bipolar, and I work in a social-services-related field! The difference is, if I ever encountered anyone who put a hand in my face and dismissed me as “just bipolar,” I would have a written warning in their file before they could even blink. This is not only because I don’t tolerate that kind of flip dismissal, but also because the attitudes of social services staff towards people with mental illness can have an enormous impact on the quality and effectiveness of services delivered to people with mental illness. It is damaging to the agency as a whole to have those attitudes expressed to clients by agency staff and it is an amazing disservice to approach people who need social services with such a dismissive, discriminatory, and oppressive attitude. To her credit, Prudence clearly sees this aspect of the issue:

Since she’s an intern and plans to go into your field, take seriously your duties to guide this obnoxious young person… If she doesn’t stop, or escalates her rude and dismissive behavior, keep your cool and explain to the higher-ups that while “Brittany” may have some promising qualities, she needs some serious attention paid to how she treats others.

This is exactly right. Social service agencies need to ensure that staff do not transmit these attitudes to agency clients. Unforutnately, based on my experience, it is not uncommon to encounter agency staff with these kinds of attitudes, primarily because agencies tend to provide little training or guidance to staff in dealing with clients with mental illness. Staff are then forced to rely on the (mis)information about mental health conditions they’ve accumulated through their lives to shape their opinions and actions, which can often lead to attitudes and behaviors like the one discussed by the questioner.

I’ve found that most people have a vague conception of what depression is and that it could be connected to suicide, but have little conception of how depression can affect a client’s everyday life. This is especially problematic when agency staff expectations for client’s behavior doesn’t account for the effects of their depression. For example, we often need to gather and review a client’s entire medical record to evaluate the merits of a potential disability claim. This can be a very complicated process – submitting medical records requests to every medical provider from which the client has ever received treatment, wrangling with records departments who want to charge exorbitant fees, following up with records departments who ignore, misplace, or deny records requests. Understanding the effects of depression is key for agency staff in how they instruct clients to gather these records, how they respond if or when a client fails to follow through, and the extent of assistance the staffer is willing to provide the client in this task. I’ve found that for a client with depression, an instruction to “gather all your medical records for us to review” can be so overwhelming and intimidating that they are unable to manage the task. Staff are likely to perceive this client as “not really committed to their case” and insufficiently willing to cooperate with the agency in pursuing their goals. This can mean the difference between providing the assistance a client needs to succeed and closing the case because the client “didn’t really want this benefit.”

Beyond depression, there is virtually no understanding of the variety of mental health disorders or the impact they can have on an individual’s functioning and ability to participate in their own advocacy. Schizophrenia and dissociative identity disorder are conflated and often ridiculed. Disorders on the autistic spectrum are not understood at all. Post Traumatic Stress Disorder is often dismissed as an overly sensitive reaction to trauma that “everyone has in their lives.”

This lack of understanding means that staff are completely unable to provide reasonable accommodations to clients with mental health disorders. Which in turn means that clients with mental illness, overall as a group, receive less effective and meaningful services from the agency as a whole. Which means that not only are agency resources more likely to benefit folks without mental health issues, but those expended on clients with mental illness are more likely to be wasted and not “land” effectively because they cannot effectively create the change the client is seeking. So, everybody loses.

The solution is more training, education, support, and guidance for agency staff on understanding these issues and providing effective services to this community. While attitudes like those of the intern in the question are unfortunate and disappointing, some of the blame has to be laid at the foot of the agency itself for failing to provide training, policies, and protocols to ensure staff are educated on these issues and know better. So while Prudie’s recognition that the intern’s attitude is fundamentally unacceptable and must be addressed if she hopes to continue in that area of work, I would go one step further and advise the questioner to push for training and support for all staff at her agency to ensure everyone has the information and tools they need to provide effective services to clients with mental illness.

Bad Behavior, continued: More on School Discipline

accessibility, justice, politics, poverty, race, , ,

s.e. smith recently wrote about abuse of autistic students in Pennsylvania and the distressing rise in abusive ‘discipline’ for students with disabilities. Ou mentioned a recent study from Delaware that found that students with disabilities are more likely to be suspended for ‘behavior’ problems than students without disabilities. Ou discussed some easy ways that a disabled student’s behavior could be categorized as disruptive and make them subject to discipline:

Are students suspended for not using modes of communication familiar to teachers? For needing to stand or pace while learning? For needing a quiet environment for learning, and for becoming upset when one is not provided? For needing orderly and precise schedules? For not completing assignments they don’t understand or find impossible to finish? For attempting to create and maintain personal space? For expressing any number of needs and needing a space where they are accommodated? For tics in the classroom?

I had all this fresh in my mind when, at work, I came across a recent report on school discipline in the Los Angeles Unified School District. Although one of the organizations involved in researching and preparing the report is an organization focused on mental health disabilities, the executive summary does not have any data or recommendations about students with disabilities. But it did have a couple of points that I found very interesting and thought were worth discussing.

The first underlines the point that s.e. smith was making in ou’s previous post – that disproportionate discipline demonstrates broader societal disregard for the targeted group. The report re-frames the student dropout crisis as a “student ‘push-out’ crisis,” arguing that discipline reform “requires respect for children’s dignity, meaning schools will not exclude, get rid of, or criminalize them for misbehavior or underachievement… If the policies and practices of every school were geared to fulfill their human rights, our children would not be excluded, tracked, and pushed out… [nonconforming] students are more likely than other students to be ‘pushed out’ of school and ultimately find themselves in the juvenile delinquency or adult criminal justice systems.”

s.e. said the same thing in ou’s earlier post:

This is a reflection of a lot of problems with the way society views and treats people with disabilities, and of serious inadequacies in the education system. Teachers who abuse students clearly should not be in the classroom, yet they are, and they are sometimes allowed to remain even after abuse is reported. Teachers who have received no training in working with disabled students shouldn’t be assigned to classrooms with disabled students, yet they are.

The primary focus of the report was highlighting the extreme racial disparities in LAUSD discipline. African-American students make up 22% of LAUSD students, but about half of disciplinary actions involve African-American students. These students were also more than twice as likely to be suspended than other ethnic groups. As the report concludes, “the gross disparities apparent in the past and current application of suspension to African-American students by LAUSD make clear that … the District employs practices that are inconsistent with federal, human rights, and state mandates.”

Although the report highlights racial disparities, it seems that one of the primary recommendations of the report would benefit all students targeted for discipline, including those with disabilities:

Priority: Share Power with Parents.

Recommendation: Share the first signs. Schools shall contact parents at the first sign that something is wrong with a student’s behavior so there is an opportunity to take preventative measures rather than wait until an issue escalates into a major problem.

Recommendation: Share planning and decision-making. Schools shall include parents on their [discipline] teams and give them equal say in decision-making and planning related to [discipline policy.]

Recommendation: Create shared trainings. The District and schools shall conduct [discipline policy] trainings jointly with administrators, teachers, and parents in the same room.

Recommendation: Enable parents to enforce accountability and transparency by schools. Schools shall establish parent committees to observe discipline practices, especially in the classrooms, play areas, and cafeteria. Schools shall make disciplinary data, practices and procedures, and outcomes and benchmark data available on a monthly basis to parents and the community so they can also monitor implementation of [discipline policy] and do whatever necessary to hold LAUSD accountable. The District shall effectively inform parents of what schools are required to do according to [discipline policy], and what parents should do if their schools are not following through.

A final thought: it would be very interesting to see data of discipline rates of disabled students of color. They must be through the roof.

Wii Fit Making Exercise More Accessible?

accessibility, bodies, media and pop culture, technology, video games/gaming, , , , , , , , ,

A black box containing a Wii Fit Plus sits on top of a white box with grey and bright green letters containing a Wii Fit Balance Board.I read recently in an issue of Family Circle Magazine (DON’T JUDGE ME!) (There was a fried chicken recipe I wanted to try out!) that “Japanese research” (could they be any more vague and list any fewer resources?) indicates that using a Wii Fit burns just as many calories as doing moderate exercise. There was no resource listed, nothing. Just a blurb stating that there was some research going on in Japan telling us that the Wii Fit was good for us. I have read on random gaming and parenting boards that there is hubbub about the Wii Fit that it is exercise vs. still being “just a video game”…

Now, I don’t really care about calories as much (or at all) as I do having access to some kind of exercise or movement that I can do without having to leave my house and trek all the way up to the base, or pay for a pricey gym membership, or exhaust my silverware drawer trying to get there, or trying to get through a class of exercise that is of a safe level for my body. Sometimes I need to move. I’ve found our Wii Fit to be small chunks of movement that I can handle when I am ready for some, and unlike a yoga class, something I can stop quickly when I am out of resources. I could go on…but you get the idea. I still prefer a good swim when I have a good day, but we all know that our bodies do not always give us what we want…

Having a Wii Fit in my house has been something useful for me, and I acknowledge that there is quite a bit of privilege there as well. There are disabilities that don’t make the amount of movement required for the Wii Fit accessible at all. It isn’t affordable for everyone (and we had the console already when the balance board was released, but the board is not required for all the games), and the games aren’t released in all countries. Even on a good day I can not always use the board safely, and sometimes my old issues with eating disorders can’t handle some of the game details that include measuring your weight and abilities to balance…

But the Wii Fit has made exercise, and moderate amounts of movement, available to some people for whom it wouldn’t otherwise have been available and accessible.

What are your thoughts, gentle readers? Have any of you used the Wii Fit and been pleased with it, as I have? What are your major complaints with the idea that it is an accessible form of exercise/movement? Love it? Hate it?

Photo Credit: Keith Williamson

Interpreters and Emergency Rooms

accessibility, activism, disability activism, intersectionality, medical practice, race

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.

Damn Y’all White Wolf

accessibility, creative work, i'm right here, intersectionality, language, othering, representations, social attitudes, , , ,

My [biggest] fandom is White Wolf’s Exalted. I’ve complained about it before and I’ll complain about it again.

I build characters because it’s fun and I often spend a lot of time working at it trying to make a person rather than a collection of attributes. Right now I’m working on a character who I actually have an expectation of playing and as ever I’m borrowing much from my life and some from various other places. This person is a rabbit (specifically this rabbit) shapeshifter with a very big hammer. Ou has told me ou doesn’t speak and I try to listen to my characters when they tell me things.

Also disabled folk can damn well be heroes. They don’t have to ‘overcome’ their conditions neither. I will try to not fuck this up too badly. Transient dysphasia and aphasia are conditions I have personal experience with but not full-time.

Thing is: Because I’m making a new character I’m taking an enormous hit on experience and power — the character I’ve been playing has more than twice as many experience points as the GM is giving me for my rabbit person. Ouch. (But I’m getting to tell a new story.) So I may do something I’m not entirely comfortable with: Use the Flaw system built into the game.

See, you can get points to buy Cool Shit by taking Flaws. Some of them are okay, like being wanted by authorities or being widely known as a demon or whatever. Some of them are more problematic, like missing body parts, mental illnesses, communication and sensory impairments.

Here’s the one for not speaking:

Mute
Cost: 1 pt. or 4 pts.
Your character is unable to speak normally. For one bonus point, the character is simply unable to speak above a whisper, while complete dumbness[1. Hi there, dumb means does not speak! I have not missed you.] grants four bonus points. A character with the one-point version automatically fails all Performance or Presence checks that require public speaking but faces no penalty on social attacks as long as his target can hear him, which requires the target’s player to succeed on a (Perception + Awareness) roll at difficulty 2.

A character with the four-point version of the Flaw automatically fails all Performance or Presence checks based on verbal communication and suffers a -5 penalty on all social attack rolls made for her unless the attack expressly has no verbal component. While there is no universal sign language in the Age of Sorrows, the character and her allies can communicate through an informal sign language if each of them commits one Linguistics slot to it.

Just kind of as an aside they tell us there are no widely-known gestural or tactile languages. None. There aren’t regional languages even. Anyone wanting to use one has to make up their own and teach it to whomever they want to communicate with. Deaf people wanting to build a community are going to have a tricky time of it in canon Exalted.

Sometimes I hate my game. I could use those four bonus points but that’s some horrible shit. But not using this mechanic isn’t going to make it disappear from the game either (there’s another player whose character made use of it — as a hot blind assassin chick). The casual disablism is not exactly unusual for gaming (and this isn’t even the worst example of disablism ((or casual bigotry)) I could pull from Exalted) where currently non-disabled developers assume a currently non-disabled audience and write accordingly. Because heroes are CND or super-crip amirite?

So yeah. I’ll probably do it. I’ll just feel icky about it. :(

Cross-posted: Aperiodically Legible.

Recommended Reading for June 21, 2010

accessibility, autonomy, language, mental health, news
A man in a hand-pedaled wheelchair holds hands with a standing woman below a signpost saying "John O'Groats"
A man in a hand-pedaled wheelchair holds hands with a standing woman below a signpost saying "John O'Groats"

Brine and Kath traveled from Land’s End, England, at the very southern tip of the UK, to John O’Groats, at the very northern tip of Scotland, the two settlements in Britain that are furthest apart, by hand-pedaled wheelchair and bike, arriving in John O’Groats on the summer solstice.

A Voice For Neli [this site is by the mother of a young black man with autism who was recently arrested and harassed in Stafford, Virginia, primarily due to his race and disability status]

My son was traumatized.  He has since been transferred to a mental hospital to receive treatment.  I have placed a link to the story below for the world to see.  How very sensational and yet sinister at the same time.  What is so suspicious about a young man sitting under a tree at the library.  The library is where my son goes quite frequently because there is a teen room there.  What made him suspicious?  Was it because he is a young black male?  Possible gun?  Why was the assumption made that he had a gun when there was no visible gun seen? Again was it because he was a young black man?  These assumptions are what catapulted the events of that day and has turned our family’s life completely upside down.

Bad Cripple – Conjoined Twins, Disability and Ethics

Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger’s book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger’s book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics.

Astrid’s Journal – On Disability and Suffering

Disability is not a tragedy. Both of these framings assume that. Someone can be suffering and have a disability, but that doesn’t necessarily mean that the person is suffering because of the disability. (Correlation is not causation!) This immediately reminded me of the first time I fought this terminology, back in 2007. My support worker wrote into my care plan that I suffer from an autism spectrum disorder. I asked her to correct it to say that I have an ASD, which she at first refused. We got into a pretty lengthy argument, in which she used all kinds of ableist misconceptions about the suffering of people with autism, until she gave in and changed the wording. Most of these misconceptions are rooted in the medical model of disability. That is, they assume disability to be an inherently bad affliction, and of course from there conclude that disability is something someone suffers from. Here are a few examples of arguments people use to base the idea that one suffers from a disability, upon…

After Gadget – Lyme Awareness Month, Part I

The next three After Gadget blogs will specifically address Lyme awareness from the service dog perspective:

  • How Lyme can affect your dog, and what you need to know about it (that your vet might not).
  • How Lyme can affect you, and what you need to know about it (that your doctor might not).
  • How Lyme transformed my experience specifically as a service dog partner.

Note: Since this blog series focuses on awareness, I’m honing in on the issues that I think are most important for you to be aware of. My goal is to prevent more cases of Lyme — especially chronic or untreated Lyme — in dogs and people. So, I’m going to skip a lot of general information. For example, telling you the name of the strange organism that causes this disease will probably not be what impels you to rethink the limp that comes and goes in your dog, or that frustrating “flakiness” of your sister-in-law. It won’t change your mind about whether you are taking adequate precautions against tick-borne disease (TBD). On the other hand, I hope this series will.

Leaving Evidence – Creating Collective Access

What is collective access?  Collective Access is access that we intentionally create together, instead of individually. Most of the time, access is placed on the individual who needs it.  It is up to you to figure out your own access, or sometimes, up to you and your care giver, personal attendant (PA) or random friend.  Access is rarely weaved into a collective commitment and way of being; it is isolated and relegated to an after thought (much like disabled people). Access is complex.  it is more than just having a ramp or getting disabled folks/crips into the meeting.  Access is a constant process that doesn’t stop.  It is hard and even when you have help, it can be impossible to figure out alone.

USA Today [so take it with a grain of salt!] – World Cup matches may boost your mental health

Scientists have shown that fans who feel personally invested in a team or, better yet, who attend games and cheer along with like-minded fans, reap the mental health benefits that come from a feeling of social connectedness. “The main thing that people achieve via sports fanship is a sense of belongingness, or connectedness, with others,” said Edward Hirt, a professor of psychological and brain sciences at Indiana University. “Sharing a common allegiance with others bonds people together in a special way. We can relate to others who share fanship with our team and feel a camaraderie with them that transcends ourselves.”

Kids these days! The “Generation Y” panic, privilege, and erasure

accessibility, age, autonomy, blaming, politics, social attitudes, work, , , , , , , , , , , , , , , , , ,

Recently, I read this odd article, penned by Judith Warner, in the New York Times–one in a stream of many that detail how excessively awful the current generation of young people (read: young workers) is at putting its collective nose to the grindstone, sucking it up, and generally not acting like a bunch of brats, or something.

Many of us have heard about, or come into contact with, some of these bright young things. They are heralded — or, more commonly, blasted — as naive, entitled, too optimistic, and over-confident. In many of these articles, their numerous faults are listed: They don’t know how to dress professionally! They expect to march into the workplace of their choice and immediately start making a six figure-salary! They think they are perfect! They want praise all of the time! (Does no one who writes these sorts of articles stop to consider that many human beings want praise when they complete a task to the best of their abilities?) They have tattoos, dyed hair, and iPods! EVERYBODY PANIC, because the American workplace is apparently going to be dragged down by Generation Y’s entitlement, narcissism and laziness! This narrative, however, seems to apply mostly to a very specific subset of the population (and even the picture that accompanies the NYT article reinforces this): young, able-bodied, middle to upper-middle class, college-educated white people.

This erases, or conveniently ignores, a hell of a lot of folks who are not young, abled, middle/upper-middle class, and white. It erases young workers who may not have had the “expected” educational opportunities (such as college), or who had to take more than the expected four years to finish their degree, or who did not finish school. It erases people whose parents or family members may not have been quite so “involved” in their education, or in their lives at all. Of course, it also erases young people with disabilities — both those who cannot work, and those who want to work but who may be bumping up against various narratives such as that of the “entitled” Generation Y kid. Some of us have psychological issues or disabilities that put us completely at odds with the “overly-confident” and “entitled” stereotype that apparently befits the current generation — because we cannot stop worrying despite the fact that we are supposed to be totally optimistic and confident all of the time, always thinking that the roads leading to our perfect job will be lined with rainbows, fluffy bunnies, and gold.

Some of us have physical disabilities, chronic pain, or chronic illnesses that prevent us from working 40-hour weeks (or more); asking for accommodations or disclosing our condition(s), we fear, may make us look “entitled,” or like we do not want to put in the time necessary to work our way up — even if this is not the case. The fact is that many people, and many young people, with disabilities are already at a tremendous disadvantage when it comes to the labor market and making a living. Not only are many people with disabilities, at least in the U.S., more likely to face lengthy stretches of unemployment and/or live in poverty regardless of age, but many face additional hostility, discrimination, and unreasonable demands, both in the workplace and from society at large because of their disabilities.

While I am not saying that these over-entitled Generation Y-ers don’t exist (I’ve had run-ins with quite a few of them, myself), I am struck by the fact that the narrative surrounding them is so dependent upon erasing or ignoring certain people whose bodies and experiences do not fit the “expected” attitudes about labor that have been traditionally upheld by American culture. Many of these attitudes, furthermore, rely heavily on binaries that reinforce who “counts” and who does not: You either work full-time, or you’re lazy. You’re willing to be mistreated in the workplace and do whatever it takes “for the job,” or you’re a wimp. Suck it up, or go home. If you’re not making enough money to live on or are poor, you just aren’t working hard enough. If you ask for “accommodations,” you’re asking for too much — just do your job! You have to work hard to “make it,” and if you don’t work hard enough, it’s your fault. If you don’t like your job or face daily mistreatment, you can always quit and find another one, right? But if you can’t, it’s your fault, and why did you quit that job, anyway? These attitudes surrounding work affect people with disabilities in a wide variety of age groups and generational cohorts, and this is a crucial part of why they are so important to critically question and examine.

The message for Generation Y, in general, may be “Get over yourself,” but the message for those who do not fit the characteristics of the “average” Generation Y worker is more severe — and ultimately more dire.

[Cross-posted at ham blog]

Injuries to mobility-impaired kids: researchers suggest “consider avoiding stairs”

accessibility, bad advice, medical practice, social attitudes, , , , , , , , , , , , , , , , , , , , , , ,

MSNBC is carrying a Reuters article, Insult to injury: More kids hurt by own crutches, about injuries to young people “related to the use of crutches, wheelchairs and walkers”. Apparently, these injuries are “on the rise”, with significant numbers of USAn emergency room attendances related to injuries sustained while using a mobility aid.

Note, firstly, that there is no formal E.R. category nor any panic about injuries related to the use of legs, despite this being a rather large category of actual injuries.

Note, secondly, that journalists reporting on this study make no attempt to interrogate the root cause of the injuries, preferring to attributing the injuries to the use of the device itself, despite this:

[…] three out of four times, the injury was caused by tipping of the device or falling as the result of coming upon some sort of obstacle such as stairs, a curb, a ramp, rough ground, or icy, wet conditions.

Why are these injuries being attributed to use of the mobility aid, instead of to poor, inaccessible design? Why are kids falling trying to navigate stairs when there should be ramps and elevators available? Why are kids falling on curbs when there should be curb cuts? Were these injuries on rough ground and ice preventable by salting, pathways, cover? 70% of the injuries occurred while children were using wheelchairs. How many were occasioned while these children were trying to negotiate inaccessible environments?

We have no idea. Because no-one, apparently, has bothered to ask. Nor has any mention of inaccessibility been considered worth reporting or putting in the press release.

Instead, we get headlines like “Crutches, wheelchairs can cause injuries” and “Injuries can be caused by crutches, wheelchairs“.

The authors of the Pediatrics study themselves chose to title their journal article “Pediatric Mobility Aid–Related Injuries Treated in US Emergency Departments From 1991 to 2008“[1], and there is no mention of universal design or accessibility in their abstract.

In contrast, there are plenty of comments throughout the study of the issue of the supposed “misuse” of mobility aids, despite this accounting for only seven percent of injuries.

There is a mention of accessibility in the full-text article, buried deep in the discussion, but this never made it to anything that will be read by the general population, or indeed most of the medical profession. Furthermore, the mention of accessibility only talks about in-home modification – completely failing to address the number of injuries that occurred on curbs, rough ground, and icy conditions.

This is what the authors had to say about accessibility:

Curbs, stairs, rough terrain, and steep inclines and declines were common trigger factors for falls and other injuries, leading us to speculate that lack of accessibility, particularly in the home, may be 1 factor contributing to mobility aid–related injury. For children who were using mobility aids on a temporary basis, particularly crutches, home modification and avoiding stairs may not have been considered.

“Avoiding stairs”.

Mobility-impaired children should consider “avoiding stairs”! This is not just ignoring accessibility; it’s a giant slap in the face. Do the authors seriously think that it hasn’t occurred to anyone with a mobility impairment to try to avoid stairs? Really? We’d love to. That would be fabulous, thanks. However, we have lives. Lives in inaccessible environments, where we sometimes are left with the choice to take stairs or not go. To school and university, to work, to doctor’s appointments, to public transport, to artistic and political events, to social gatherings. Mobility-impaired people don’t take stairs and curbs out of choice; we do it because there’s no accessible alternative provided. And what happens to PWD who can’t take stairs no matter what? Confinement. Yes, PWD aren’t “confined” by wheelchairs; PWD are confined by discrimination, thoughtlessness, and inaccessibility.

Instead of using their platform to publicise an unequivocal call for safer public design, the authors choose to focus in their abstract and press release about how they think “additional research” is needed. The need for further research is, indeed, their ONLY conclusion! But if this research focuses on device malfunctions and children’s competence, “misuse” of mobility aids and custom in-home modifications, it is destined to fail.

If there is to be additional research, a broad, societal view must not be so studiously ignored. However, do we really need more and more and more research to tell us that kids with mobility aids have trouble negotiating stairs, have trouble getting up curbs, have trouble on icy ground? More research to tell us, five or ten or twenty years of inaction down the track, that PWD of all ages are endangered by inaccessible environments?

Without recognition of the systemic causes of a problem, there can be no successful systemic solutions. How much “additional research” is needed before there is action? How many inquiries? How many reports? How many white papers? We need to stop looking at the trees, and look at the forest.

The solution is to inaccessibility is accessibility. The first-tier principles of mobility accessibility are straightforward and long-established. Get on with it.

[Hat tip to Andrea of the Manor of Mixed Blessings]

[1] Pediatric Mobility Aid?Related Injuries Treated in US Emergency Departments From 1991 to 2008
Alison M. Barnard, Nicolas G. Nelson, Huiyun Xiang and Lara B. McKenzie
Pediatrics published online May 24, 2010;
DOI: 10.1542/peds.2009-3286

Why Don’t Non-Disabled People Trust People With Disabilities Anyway?

accessibility, activism, anna rants, disability activism, i'm right here, invisibility

Disability simulations and disability awareness days are condescending and patronizing towards people with disabilities. Instead of “raising awareness” about the “struggles” people with disabilities face, they end up raising awareness of how difficult it is to be a first-time wheelchair user, open bottles with socks on your hands, or navigate spaces with your eyes closed. They do not actually teach anyone anything about disability.

 


 


 


 

I suppose it would be wrong to end the post there.

First, a bit of context. Last week marked the third year that some Canadian Members of Parliament (federal representatives) – including my own, Megan Leslie, and the NDP party[1. NDP = New Democratic Party. They’re our more-left-of-center-than-the-Liberals party in Canada. In the UK, they’re like the LibDems, in Australia, I think they’re like the Labour Party (but I’m not sure) and in the US… well, in the US, they’re scary socialists who want universal healthcare and support unions and are pro-choice, so they’d be non-existent in your current political environment.] whip [1. The party whip is the person in a political party who ensures that party members are present for key votes and that they vote in line with party policy. The Wikipedia entry looks pretty good.] Olivia Chow – spent a day on the Hill attempting to do their jobs while using a wheelchair.

Second, important information. This year event is co-sponsored by the Canadian Paraplegic Association as part of Spinal Cord Injury and CPA Awareness Month. While their website refers only to the 2009 event, I’m assuming the relevant information is similar:

Several Members of Parliament and Senators have spent one day in May in a wheelchair. They conducted their normal working day having to make time allowances for simple things like finding wheelchair accessible shuttles and washrooms. They were only allowed to leave their chair while in the House of Commons as there is only one wheelchair accessible spot on the floor for the Parliament Hill event co-sponsor the Honorable Mr. Steven Fletcher.

I think it’s clear that not every disabled person agrees with my assertions about disability simulations, but I have some very strong reasons for describing them they way I do. Some of those reasons are best demonstrated by Olivia Chow’s tweets throughout the day. [You can see this all in context at her twitter. The event took place on May 12. Ms Chow tweeted throughout the day. Ms Leslie also tweeted about her experience, complete with pictures.]

Olivia Chow’s tweets throughout the day really irritate me. She did a series of tweets about the barriers facing wheelchair-users in Ottawa: …lack of curb cuts, bumpy sidewalks, washrooms too small, tables w wide legs…; …hills, doors that don’t open automatically, heavy chairs, elevators shutting too quickly…; Most of these barriers can be overcome by better design, government that understand disability and kind pp willing to help.

Actually, Ms Chow, all over those barriers can be overcome through better design, and while it’s nice if a government “understands” disability, I would really rather they listened to people with disabilities instead.

What Ms Chow’s tweets did is emphasize that, both as an MP and as a former City Councillor for Toronto, she doesn’t trust people with disabilities to actually be telling her the truth about their experiences. Instead, she tweeted
I wish I had this wheelchair experience day while I was a city councillor as a lot of barriers are gov by municipal code. and Maybe I should work w the Canadian Paraplegic Asso …and challenge councillors to spend a day using wheelchairs.

Actually, Ms Chow, I have a better idea.

Why not challenge the City Councillors, and the MPs, and anyone else you know who has government power to talk to people with disabilities about what their needs are, instead of deciding that spending a day in a wheelchair gives you some special insight? (Especially egregious to me is that the nice people playing dress-up in their wheelchairs for a day could instead have asked Steven Fletcher, the Conservative MP for Charleswood—St. James—Assiniboia, Manitoba, who is a full-time wheelchair user. He might be able to shed some light on issues of accessibility in Ottawa. Mr Fletcher does support this disability simulation, but this doesn’t actually prevent anyone in Parliament from asking him about it anyway.)

It really disappoints me to see the NDP participate in these so-called disability simulations rather than use their power to highlight the voices of actual people with disabilities when discussing their accessibility needs.

Canadians with disabilities campaign constantly for their voice. We don’t need Olivia Chow, or Megan Leslie, to go around for a day tweeting about how inaccessible Ottawa is. We need our elected representatives to actually listen to our concerns. We need them to take those concerns seriously, and present them to their Party – be it NDP, Liberal, Conservative, Bloq, or Green – and to our Government. We need politicians and policy makers to believe that our voices are the ones that define what our accessibility needs are, not a day-long experiment.

I know that going around for a day in a wheelchair gets attention and kudos from the currently non-disabled. I’d rather that attention be offered to the people who continue to be notably absent from our Houses of Government.

Guest Post by Lightgetsin: The one where I shout about able-bodied technology privilege for a while

accessibility, social attitudes, technology

Guest post bylightgetsin, originally posted April 29, 2010.

I love it when well-meaning able-bodied people try to pimp their technology at me because hey, they just got this new gadget, and it’s accessible, isn’t that cool? I should get one!

No. No it is not, and no I will not, and I am getting progressively less and less polite about this. Like the random dude this morning who was all, “my GPS talks, you should get one!”

Okay. For the record. Your GPS may “talk,” but it is not accessible. Maybe it will vocalize directions, but what good does that do me? How am I supposed to use the touch screen controls, all the menus with no speech, the setup process, the default reliance on graphical maps? I mean, seriously, in what universe where you think about this for more than five seconds is that accessible?

As a matter of fact, I do have a GPS. It is not the cute little “it’s only $250” model this guy shoved at me this morning. Mine cost seventeen hundred dollars, runs on a proprietary software platform, is three times the size, and currently has wildly outdated maps.

“It talks” =/= accessible.

Also, telling me after I point out that a website is really inaccessible that “it has hotkeys, you know,” is not helpful. Hotkeys, on the extremely rare occasion they actually work (they are usually duplicative and suppressed by all my intricate native Windows and screenreader keyboard commands), also =/= accessibility. I can maybe hit a link, but how am I supposed to, I don’t know, read the website text? Awkward.

Also, the next person to tell me to get a Kindle . . . really shouldn’t. The Kindle occasionally reads a book out loud, though of course not as many now that Amazon has thrown its users under the buss in the face of an illusory and baseless copyright complaint. I’ve helped out with the Reading Rights Coalition, so I could go on about this at great length. But the Kindle itself is not accessible, and Amazon has no plans to make the relatively minor adjustments to make it baseline usable.

I have a handheld reading device. Hint: it cost more than a Kindle.

Accessibility comes at a financial premium as much as five or six times the going market rate for any given device, and usually runs years behind the curve. I’m going to need to use a Blackberry next year – an access solution for Blackberry just came out a few months ago (costing several hundred dollars over top of the normal Blackberry purchase price, of course), and by all accounts it is a largely nonfunctional piece of crap.

Apple might be pursuing out-of-the-box accessibility with no consumer premium, but pretty much no one else is. And OSX still isn’t a viable choice for me as Voiceover doesn’t do a half dozen things I need it to. So no, random gadget probably isn’t accessible, and frankly I’d rather not hear about it and have to explain again why not and just how much more money I will be paying for something that does less.

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