All posts by s.e. smith

About s.e. smith

s.e. smith is a recalcitrant, grumpy person with disabilities who enjoys riling people up, talking about language, tearing apart poor science reporting, and chasing cats around the house with squeaky mice in hand. Ou personal website can be found at this ain't livin'.

Recommended Reading for 18 June, 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.

A GI Joe, a male plastic doll with a crewcut, posed to form the American Sign Language Sign for 'friend.'

(Photo by kiddharma, Creative Commons License)

Alice Dreger and Ellen K. Feder at Bioethics Forum: Bad Vibrations (Content warning: child sexual assault, forced genital surgery, medical experimentation)

What is Poppas thinking? So far as we can tell, from published articles, presentations to parents, and his communications with Feder, he thinks he is responding to critics of genital surgery, like us, and thus reassuring parents that everything is going to be fine. Notably, though, there is a lack of control data for most of the patients described, meaning that we don’t know what sensation these girls might have had without the surgeries, nor do we know what a “normal” level of sensation is at these ages. (We can’t imagine any sane parent giving up his or her daughter to be the control.) We also don’t know that what the surgically altered girls feel in childhood will map onto their adult sexual lives. And we don’t know how Poppas’s tests are going to affect their psychosocial development.

Wheelchair Dancer: Super Movement

I wonder if, as the company has over the years got “better”, the price of that has been a series of expectations for ever more complicated and daring moves. I wonder if we will be able to keep up and, even, keep our reputation/ following as dance audiences, influenced by the tv shows with their own kinds of extreme movement, turn to art dance. Will simple speak alongside flashy?

Most of our work has been created by non disabled choreographers. I know that as we strive, for example, to move in unison, that I feel a lot of pressure on the disabled dancers to “keep up.” The rhetorical and movement dynamics are almost without exception focused on translation/adaptation. And, as part of being able to dance in these ways, we have become ever more adept at making the extraordinary look like “ordinary dance.”

Katja at 2010 Longmont Triathlon

Based on last year’s experience, one of the other wheelchair athletes and I met with the race director a week before the race to talk about the logistics of including wheelchair athletes and especially to deal with some of the problems in the run course. It was mostly on a bike path with a lot of bad pavement and thorns. There was some very tight turns, difficult to do with a 5-6 foot long racing wheelchair. And there were portions over grass and curbs. We walked (rolled, biked) the course, and came up with some alternatives. We also had to alter the way the wheelchair athletes exited to the pool to go the transition area as the existing route included steps and grass.

Andrew Seidman at the Miami Herald: House panel: FEMA unready to help the disabled in a disaster

Almost five years after Hurricane Katrina, the federal government remains woefully unprepared to rescue at-risk groups of people in the path of a catastrophe, a congressional panel charged on Tuesday.

A House Homeland Security subcommittee challenged the Federal Emergency Management Agency’s Office of Disability Integration and Coordination to explain how its budget of $150,000 and its staff of four people could possibly execute an effective rescue plan for the aged, disabled and institutionalized.

Elizabeth at Student-built app allows disabled transit riders to get help from smartphones

Research from tech-savvy students at Ryerson University is helping disabled passengers navigate a subway line halfway around the world.

Their work, part of a push by the Toronto campus to tap student know-how to create new digital products, is allowing riders on one line of the Paris Metro to use their smartphones to get directions, plan their trip and ask for assistance from transit staff. Closer to home, the group is hoping to test the student-developed application on the GO train’s Lakeshore and Richmond Hill lines this fall.

taniada at Cynical Idealism: Untitled (Video with transcription)

Throughout history, people with physical and mental disabilities have been abandoned at birth, banished from society used as court jesters, drowned and burned during the Inquisition, gassed in Nazi Germany, and still continue to be segregated, institutionalized, tortured in the name of behavior management, abused, raped, euthanized, and murdered. Now, for the first time, people with disabilities are taking their rightful place as fully contributing citizens. The danger is that we will respond with remediation and benevolence rather then equity and respect. And so, we offer you a credo for 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[@]disabledfeminists[.]com

The High Price of Industry: Cancer Villages in China

Starting in the 1990s, cancer rates in China began rising at an astounding rate. By 2007, cancer was accounting for one in five deaths in China. Similarly rapid increases in cancer rates are being seen in many other nations that are in the process of industrialising. Once considered a disease of the industrialised world, cancer is a growing problem in many nations that are struggling to gain a foothold in the global economy, as well as nations that are already well positioned, but still rapidly growing, like China.

A lot of news stories like to blame this on the acquisition of ‘Western habits’ and the ‘Western diet,’ or on smoking. These are, after all, convenient and popular targets for blame in the industrialised world as well. Other studies point to increased life expectancy that increases the chance that people will develop cancers simply by nature of living longer.

However, many of these stories ignore a major hidden contributor to rising cancer rates: environmental pollution.

Industrialising countries tend to have extremely high pollution rates. Environmental pollutants like heavy metals in the water have been clearly and substantively linked with cancer in numerous studies. Air, water, and soil pollution have been associated with a wide range of cancers including breast, liver, stomach, and lung cancers. Need evidence of pollution in China? There’s the Asian brown cloud, a proliferation of e-waste in China, and, of course, the pall cast by coal fired power plants, among many other things.

The tendency to attribute rising cancer rates to personal habits is one that places the responsibility for cancer solely on the individual. It’s easy to see why leaning towards ‘habits’ when it comes to attributing cancer rates is appealing, especially for policy makers and corporations, because it dodges the environmental link and any government or corporate-level responsibility. If cancer can be blamed on people, instead of institutions, it eliminates the need to address environmental causes of cancer, like pollutants that sicken people in their own communities, occupational hazards like workplace exposures to chemicals, and pollutants that disseminate and sicken people far from the source.

Regulation of pollution is erratic and sometimes very lax in rapidly industrialising countries, many of which have ‘economic zones’ of some form or another that are specifically designed to attract foreign companies with lax environmental, labour, and tax laws. Historically, people have presented this as some sort of flaw on the part of the populations and policymakers in these nations, implying that people are greedy for the potential profits of industrialisation, or not very knowledgeable about environmental issues, or that they are susceptible to bribery and thus can’t be trusted to make sound policy.

The truth is actually more complicated. Industrialising nations are subjected to immense pressure from industrialised nations to keep their regulations lax and incomplete and to meet demands from multinational companies to create ‘hospitable’ business climates. Many of these industrialised nations are former colonisers, adding another layer to the situation, and many of these corporations take a role in policymaking and governance which might surprise you, like using armed paramilitary forces to silence human rights advocates, Indigenous people, and communities. Many nations with international trade agreements are pressured by corporations that want to cut down on the costs of production by making products in countries with less stringent environmental and labour laws; look at the maquiladoras that line the United States-Mexico border for an example.

We need only look to BP operating in the United States to see how aggressively corporations resist environmental regulations in industrialised nations. In industrialising nations, which are largely regarded as low-hanging fruit for profit, that resistance is magnified, and corporations are much bolder about pressuring nations to refuse to adopt or change environmental regulations and violating those regulations when they are put in place. The same holds true with labour laws; many companies outsource production to nations with less stringent labour regulations to take advantage of the low, low costs of child and slave labour.

China represents a perfect storm. An industrialising nation with environmental regulations that are not keeping pace with pollution and the rise of vast factory towns where companies from all over the world expect to obtain a source of low-cost labour in a lax regulatory environment. Entire villages are sickening and dying as a result of environmental pollution (link via abcsoupspot). Reporting on China’s ‘cancer villages’ is suppressed, and it’s difficult to estimate the full extent of the phenomenon.

What’s happening in China is also happening in communities all over the world. As concerns about pollution rise and regulators tighten up, which they are doing in China, the pollution doesn’t disappear, it just moves. Sources of pollution such as industrial waste dumps and factories don’t just disappear. These things are still ‘needed.’ They simply move to other locations.

Those locations tend to be impoverished communities. Either they are forced on communities that are not given a choice, or they are actively welcomed by communities in dire need of jobs and income. As goes Xinglong, so goes Kettleman City. There is a long and ignominious history of shunting pollution on to poor communities that are the least equipped to deal with it, the least equipped to protest it, and the least likely to have infrastructures in place for early diagnosis and treatment of pollution-related illnesses. Many of these communities also have big minority populations, with environmental racism coming into play when it comes to deciding where polluting industries should be situated.

Environmental pollution is a global human rights issue, not a problem limited to tree huggers. With pollution comes much, much more than loss of biodiversity, extinction of endangered species, destruction of topsoil, and a host of other specifically environmental problems. Death and disease ride with environmental pollution, just as classism and racism perpetuate and determine which communities will be affected by it.

Videos: Creative Work

I’m back on a video kick this week.

Up first, a modern dance composition by Laura Jones. ‘Re:Bound’ is a very dynamic piece. Jones moves sinuously, using her whole body very expressively, and the music is rather moody. You can read an interview with Laura Jones published at Ballet-Dance Magazine if you’re interested in learning more about her. Here’s an excerpt from the interview:

At the age of 16, a week into starting my course, I suffered from a spinal bleed which left me paralysed from the chest down. So, just when I had decided what I really wanted to do, I felt it was taken away from me.  But my tutors at college were just fantastic. They said: “Come back and finish, at least some parts of the course… you’ll still be able to do the theory… so, come back!”  As the course progressed, they kept saying: “Well, I don’t see why you shouldn’t do this part of the course as well … and you can do your solo choreography … and you can do the set study, surely… and why don’t you try to do the notation as well?” So with their support and encouragement, I ended up completing the whole of the course and became the first student to complete 100% of the Dance A-Level in a wheelchair! And that’s something that no one can take away from me!

And the dance piece itself:

I’m a huge fan of this American Sign Language (ASL) music video; it’s an interpretation of ‘Single Ladies’ by Beyonce. It’s a very catchy pop tune; you can find the lyrics here. Jubil Khan, the performer, is deliciously talented and expressive. The choreography is fairly simple. She’s mostly standing in front of a wall, facing the camera and Signing while dancing. For an ASL version of ‘Single Ladies’ with choreography, you can check out another version here.

Here’s an interesting time-lapse video of Mariam, a member of the US Association of Mouth and Foot Painting Artists, creating a piece called ‘Larval Eye Hive.’ I admit to having an irresistible adoration for time-lapse videos of works of art and architecture being created; I love watching things sprout on the page or the landscape. Your mileage may vary, but I hope it’s at least a bit interesting for you!

The video shows her from start to finish, using her mouth to manipulate pastels and other drawing tools. There is a sound track, but it’s just music (which I didn’t find particularly scintillating). The finished piece is a humanoid figure wearing a striped shirt. The figure’s face has a very long nose and four sets of eyes in different colours, and the background has text in block letters: ‘Interworldness beyond the ever flowing never known in the larval eyes hive of this life that like the simile that smiles come back to cla-[I didn’t catch the rest because the camera kept shying away]’

US Action Item: Support House Resolution 3101/Senate Resolution 3304

House Resolution (H.R.) 3101/Senate Resolution (S) 33041, also known as The Twenty First Century Communications and Video Accessibility Act, just went through committee hearings, nearly a year after being introduced. Referral to committee is the second step that happens after a bill gets introduced; in this case, H.R. 3101 has been referred to the Committee on Energy and Commerce in the House and S 3304 is in the Committee on Commerce, Science, and Transportation in the Senate. The committees will report on the outcome of their hearings and if that report is favourable, it will be brought to the floor for a vote. If both houses approve, the bill passes and the President can sign it into law.

This piece of legislature is one that I would really like to see pass.

What is The Twenty First Century Communications and Video Accessibility Act?

If you like to view things at the source, you can read the text of the bill here. If you’d rather not, the quick thumbnail is that it’s a bill mandating accessibility for Internet-enabled telecommunications devices. Some highlights from a one page summary provided by the Coalition of Organizations for Accessible Technology:

  • Allocates up to $10 million/year for equipment used by people who are deaf-blind (Currently:  Inadequate state programs that distribute some free or discounted telephone equipment, but little available for people who are deaf-blind)
  • Clarifies the scope of relay services to include calls between and among people with disabilities and requires Internet-based service providers to contribute to the Interstate Relay Fund
  • Extends closed captioning obligations to video programming provided by, or generally considered comparable to programming provided by, a television broadcast station, even when distributed over the Internet: covers video programming that was previously captioned for television viewing, live video programming, and new video programming provided by or generally considered to be comparable to programming provided by multichannel programming distributors; does not cover user-generated content (e.g., YouTube videos posted by individuals) (Current law:  Captioning required on most broadcast, cable and satellite TV shows)
  • Requires easy access to closed captions via remote control and on-screen menus

The National Association of the Deaf has more detail on the bill here.

How can you support it?

You can start by checking out the list of sponsors to see if your representative is listed. If your representative is on there, send ou a polite note expressing thanks for support. If your representative is not, you can send a letter asking that ou consider sponsoring the bill. COAT has a template available, although it is helpful to customise it a bit to make it more personal.

Don’t know who your representative is or not sure about how to contact your rep? The ‘Write Your Representative‘ tool will help you.

It’s also a good idea to contact your Senators to let them know that you support S 3304 and you would like them to support the bill. If your Senators happen to be on the Senate Committee on Commerce, Science, and Transportation, so much the better. You can see a list of Senate cosponsors here.

Caption Action 2 is keeping up on H.R. 3101 and posting regular updates.

  1. The different bill numbers reflect the separate systems used in the House and Senate. The bills must be identical for both houses to pass it and it to enter law.

You Can’t Legislate Ableism Away

Of the most pervasive myths about anti-discrimination legislation is that the passage of the legislation somehow magically puts a stop to the discrimination, making everything hunky dory. This myth is most commonly believed by people who are not personally impacted by the discrimination that legislation was designed to address. It’s unfortunately a pretty easy myth to disprove.

Today, I decided to do some hunting around to illustrate a really pervasive form of discrimination that many people think isn’t a problem anymore: Denying access to people with service animals. There are a lot of misconceptions about service animals and what they do, and I’d recommend reading folks like Sharon at After Gadget, Melissa at Service Dogs: A Way of Life, or thetroubleis at The Trouble Is… if you’re interested in some service animal mythbusting.

In many regions of the world, there are laws in place that dictate access for service animals. Here in the United States, for example:

The service animal must be permitted to accompany the individual with a disability to all areas of the facility where customers are normally allowed to go. An individual with a service animal may not be segregated from other customers. (Commonly Asked Questions About Service Animals In Places of Business)

That seems pretty clear. How does that play out in practice?

Claire Crowell, 69, said she tried to go to the Chinatown restaurant on Wednesday with her dog, Vixen, but was told by a front desk worker she could not bring the dog into the building. (‘Restaurant Sorry For Banning Seeing Eye Dog‘)

Christopher Nigl, 34, said he wants a teacher at Washington Elementary School to lose her job and the principal punished because they reported him to police when he was walking his medical dog in front of the school while on his way to pick up his girlfriend’s child after school. (‘Man threatens lawsuit over service dog incident‘)

Our fair neighbours to the north also seem to be having trouble with the concept of accessibility:

Renee Brady, who has relied on her six-year-old golden retriever to be her eyes for the last five years, said she was taken aback when the manager of the restaurant at Main Street and Mountain Avenue told her on Wednesday she had to eat her food outside because of the dog.

Brady, who was with a co-worker at the time, said at first she thought the male manager didn’t realize her dog, Able, was a guide animal. But she quickly realized that wasn’t the case.

“I said he was a guide dog and he said ‘I know it’s a guide dog, but you’ll have to leave,’ ” she said in an interview Friday. (‘Fast-food eatery shoos blind woman’s guide dog‘)

Across the pond:

She said: “It was late and we were cold and wanted to get home, but when approached the lead hackney carriage for a lift the driver just said: “Four people but no dog.”

“We were flabbergasted, especially as he had disabled stickers on display.

“But when we pointed out that he would be breaking the law if he refused to take my guide dog he just said: “Take me to court.” (‘Blind groups welcome taxi driver’s ‘no guide dog’ fine‘)

Britain isn’t the only nation with a recent incident involving a guide dog and a taxi:

A Sydney cabbie has been fined for refusing to allow a guide dog and its high-profile owner – Disability Discrimination Commissioner Graeme Innes – into his vehicle.

Driver James Young has been fined $750 and ordered to pay $2,500 in costs after refusing to let Mr Innes and his labrador into his taxi in the Sydney CBD in April last year. (‘Paw form: cabbie fined for refusing guide dog‘)

In all of these cases, the dog was explicitly identified as a service animal. Most involved guide dogs, although Mr. Nigl’s dog was a psychiatric service animal. People persisted in discriminating in these incidents even after being informed that the dogs were service animals and that what they were doing was against the law.

I support anti-discrimination legislation, firmly. Without any legal framework at all for addressing discrimination, we would be facing an uphill battle. But what people who think that the problem ends with the legislation don’t seem to realise is that this is still a battle. We cannot wave a legislative gavel and whisk discrimination away; the legislation provides a means for fighting in court, which is important, but it does not end there. It sometimes empowers agencies to enforce it, but these agencies still have to do that, have to take reports on discrimination incidents, follow them up, and then use the enforcement tools at their command.

It does make inroads into social attitudes. High profile cases do attract attention and force people to start thinking about these issues when they might not otherwise, and the discussion about the necessity for such legislation highlights the fact that discrimination is an ongoing issue. However, more commonly, such laws are a reflection of a shift in social attitudes, with people gradually recognising that a.) Discrimination exists b.) It’s a problem and c.) Something should be done about it.

This is not a battle that can be fought and won in the legislature and the courts alone. It also needs to be fought in opinion editorials, on the streets, in popular culture, and in every other location that we have a chance to reach and access people. It’s not fair that we should have to advocate for the right to exist, for the right to go about our business like everyone else, but there it is. Policy supports this fight, but let no one make the mistake of thinking that policy wraps up the problem and allows them to move on to other things. Existing is still a political act, whether or not there’s a law that says it’s not ok to discriminate.

Coming Out In a Dangerous World

Irish novelist Marian Keyes recently came out about her depression and just published an update for her fans. The decision to openly discuss her depression is being widely covered in a lot of circles, as any disclosure of mental illness by a prominent figure tends to attract attention. Stephen Fry is also a public figure who has written about depression and discussed it publicly. Carrie Fisher is another example.

Something that often gets said about disability and mental illness in particular is that if people just came out, the stigma would go away. That people have an obligation to come out, to talk about their conditions with others, to educate, to dispel myths. This insistence that people, especially public figures, somehow owe it to the world to talk about their personal lives is really frustrating and it illustrates a profound lack of understanding.

It’s true that coming out may, over time, erode stigma, but at a great cost to the people who come out. It places the burden squarely on people who are experiencing oppression, not on the society that creates that oppression. It is not up to individuals to fight stigma and ableism, using their own bodies as a battleground. It is up to society to hold the mirror to itself and to examine its own complicity in the development and perpetuation of stigma.

The case of Marian Keyes is of particular interest to me because, as Meg at fiction_theory points out, there is a great deal of ableism in the publishing industry. There’s a pervasive myth that writers in particular are often mentally ill, that mental illness and creativity are linked, yet, at the same time, being openly mentally ill and working in publishing is a highly stigmatised position to be in. Editors and publishing professionals routinely belittle mental illness, making it no small wonder that writers would be reluctant to openly discuss mental illness. Aside from the obvious desire to not openly attract abuse, disclosures can kill a publishing career.

There’s also a lot of internalised ableism that expresses itself in how people deal with public disclosure of mental illness. Keyes wrote:

I know I’ll be criticised for saying all this, I know it sounds horribly selfish, when life is such a precious gift and many people desperately want to be alive and are denied it, but honestly, I’ve had no control over it.

I have no doubt that her fears of being criticised for being open about mental illness were well grounded, but there’s also a certain amount of self defeat between the lines. It almost seems like she feels like she needs to be guilty about her depression. This thread is consistent throughout her update; she constantly reminds us that she feels bad about not appreciating her life more, as though she bears some personal responsibility for her depression and should just try harder. Even as she’s telling us that these attitudes are not productive, she’s reinforcing them.

I’m well aware that I have an enviable life and there are bound to be people who think, “What the hell has she got to be depressed about?” But whatever has been wrong with me isn’t fixable by an attitude shift. Believe me I’ve tried (Mindfulness, Cognitive Behavioural Therapy, gratitude lists…)

This speaks to a lot of social attitudes. Ideas about who is ‘allowed’ to experience depression, about how people should just snap out of it. At the end of her piece, she says:

I hope you’re all well and if you’re not – and some of you may not be, one of the things I’ve learnt is that this sort of headspace is far more widespread than is openly acknowledged, so many of us are hanging on, almost overwhelmed with desperation and feeling like it’s our fault, that what’s wrong with us is just self-pity or negative thinking or innate defectiveness…

Yet, she concludes with a note of feeling guilty. Surely, someone with such a privileged life can’t be allowed to be depressed!

There are layers within layers here. If there wasn’t such a stigma, coming out wouldn’t be such a loaded act. If society wasn’t so ableist, Keyes might not have internalised so many attitudes. If the publishing industry wasn’t so judgmental, perhaps Keyes might be able to neutrally state that she has depression, to thank her readers for their support, and not have to feel like she needs to justify it, or apologise for it.

And if society wasn’t so determined to place the burden of fighting oppression on the oppressed, Keyes’ admission wouldn’t have been a political act.

This Is Not Education: Abuse of Autistic Students in Pennsylvania

Content warning: This post contains discussions about abuse of people with disabilities, including physical assault and the use of restraints.

Last week, a major civil rights lawsuit was settled in Pennsylvania when seven families agreed to accept five million United States Dollars to resolve a case they filed against a teacher and her superiors, arguing that she abused the students in her care and her superiors did not take adequate steps to address it. It is the largest case of its kind in history in Pennsylvania, and one of the largest in US history. The teacher has already served six weeks for reckless endangerment; the question here isn’t whether she abused her students or not, but why the district failed to do anything about it.

These students were in elementary school. They were restrained to chairs using duct tape and bungee cords. The teacher stomped on the insoles of their feet, slapped them, pinched them, and pulled their hair. These nonverbal students apparently weren’t provided with communication tools that they could have used to report to their parents, which meant that the teacher was free to lie about the source of the injuries these children experienced while in her classroom. Horrified aides in the classroom reported it, and the teacher was simply reassigned.

The teacher’s defense was that she didn’t have training or support. This may well have been true. However, if that was the case, she should have recused herself from that classroom. Aides confronted her about her classroom behaviour and she said she ‘didn’t know how to stop.’ I’d say that asking to be taken out of that classroom would have been a pretty fucking good way to stop. If the defense to that is ‘well, it would have ended her teaching career,’ then may I suggest that a person who physically abuses children is not fit to be a teacher? That a person who feels that stomping on the insoles of a child’s feet is an appropriate method of ‘discipline’ is clearly not someone who should be in charge of a classroom?

‘We weren’t sure how a jury would view these facts, especially since children were involved,’ an attorney for the defense said, which is a polite way of saying ‘we are well aware that if this case had gone to trial we probably would have paid more than five million.’ The funds are being put in trust for the children, who, among other things, are in need of therapy.

There have been ‘hundreds of cases of alleged abuse and death related to the use of these methods on schoolchildren during the past two decades.’ The House of Representatives actually recently passed a bill addressing this issue, responding to a report from the General Accounting Office documenting abuse of school children across the United States.

The restraint of children with disabilities in school is, unfortunately, not at all notable. It’s a widespread and common practice and I see stories about it in the news practically every week. I’m sure a perusal through the recommended reading archives here would turn up several examples. This doesn’t make it any less vile or wildly inappropriate. I am heartened that legislation has been passed to address the issue, but outlawing abuse isn’t enough, and it’s clear that better training, accountability, and transparency are needed. The reports of those aides shouldn’t have been ignored. That district should not have reassigned the teacher to another classroom.

What is remarkable, and important to note, is that it takes a lot of money to take a case like this to court. Which means that settlements of this kind are only really available to families with at least some money. Even with lawyers willing to volunteer time, taking a case through the courts requires time, energy, the ability to pull supporting materials together, and patience. These things are not options for all families. Especially for parents with disabilities, the barriers to getting to court can be an obstacle so significant that even if they want to fight for their children, they might find it impossible to take a case to court.

Access to justice should not be dictated by social status and economic class, but it often is.

We shouldn’t have to pass laws saying it’s not ok to duct tape children to chairs, but we do.

Dear Imprudence: I’ll Tell the Doctor On You!

Reader bzzzzgrrrl reads Dear Abby so I don’t have to; Friday’s Dear Abby column featured this question:

Dear Abby: A friend of more than 40 years, “Myra,” delivered a letter to my physician outlining her observations of what she claims were “changes” in me. I was called into my doctor’s office to respond.

Myra has also told me I should see a psychiatrist. I am disappointed that a friend would say these things about me, and I don’t think she should have contacted my doctor without telling me. I have asked others if they have noticed any dramatic changes in me and no one else has.

Myra may have my best interests at heart, but I am upset about this, to say the least. Am I wrong to feel that she has overstepped her boundaries? — Perfectly Fine in Ohio

I was reminded immediately of the story our abby jean linked to on Thursday, about a young man with depression who dared to talk with his friends about suicidal feelings, and got the cops called on him.

How does syndicated advice columnist Abby respond?

Dear Perfectly Fine: Your friend must have been extremely concerned about you to have taken the step she did. And I wish you had mentioned in your letter WHY she thinks you should see a psychiatrist. If you have no family nearby with whom she could discuss her concerns, it’s possible that she did what she did out of love for you, so please try to forgive her.

P.S. Was what she did out of character for her? If so, consider discussing it with her family — or physician.

Ah, yes, a little ‘furnish the details!’ plus ‘you should turn the tables on her and talk to her family or her doctor!’ I mean, seriously, Abby not only supports the concern trolling, but seems to suggest that Perfectly Fine should feel guilty. ‘She meant it for your own good, you know!’ And then demands that Perfectly Fine detail whatever it was that made this ‘friend,’ we’ll call her Busybody, tattle-tale to the doctor. Then, she follows up with ‘well, maybe you should talk to Busybody’s doctor in case there’s something wrong with her.’ Of course, Abby ignores the fact that Perfectly Fine might well already be in treatment, and just not feel like sharing it with the world, and that’s not Abby’s business, ours, or Busybody’s.

How many things are wrong with this story, and with this response? It’s kind of hard to start enumerating them. But both of these stories, Perfectly Fine’s and the story abby linked to, reflect a generally held idea that it’s perfectly acceptable and even advisable to directly meddle in the lives of others ‘for their own good,’ especially when it comes to mental health. Contacting someone’s doctor because you think that person has ‘changed’ is incredibly intrusive and violating. Calling the police on your friend when ou tries to reach out and talk is a pretty awful thing to do. Both things happen a lot, and sometimes they end in very ugly ways, like involuntary psychiatric holds. As soon as someone is suspected of mental illness, the words and beliefs of the people around that person matter more than ou own statements. That is a really, really, really scary place to be in, to know that no matter what you say, people will ignore you.

What ever happened to ‘you seem a little down, do you want to talk about it?’ Or,  if someone tells you that ou is having suicidal thoughts, ‘is there anything I can do to help?’ There are all kinds of reasons why Perfectly Fine might have been experiencing a change in mood. Perfectly Fine might be really busy, might be irked at Busybody for something and not ready to talk about it, might be having a medical problem ou doesn’t feel like talking about, might be grieving a loss, having a tough time at work, or any number of other things, although it’s telling that ou friends didn’t notice anything. The first step when someone you are close to appears to be behaving out of character is not to run and tell the doctor or call the police, but to make it clear that you are available to talk if that person is interested.

I am very disappointed in Dear Abby’s response. It reflects a profound lack of respect for personal autonomy, and reinforces some very upsetting social attitudes.

Caption This

The other day, I was bemoaning, as I occasionally do, the fact that HBO doesn’t provide digital content for people who are not HBO subscribers or who can’t get HBO where they are. I happen to be a fan of several HBO shows and I would really like to watch them as they air, rather than having to wait for DVD releases. While the network and cable models are different, I would be perfectly happy to pay for an access pass to watch HBO shows when they air, but HBO doesn’t provide this as an option. I used iTunes as an example of a platform that HBO could use to release content, following the model of the networks.

FWD reader codeman38 pointed out that iTunes doesn’t provide captioning for its television shows. Way to go, iTunes.

Captioning of online content is an ongoing problem. iTunes isn’t the only content provider that provides captions indifferently, if at all. Hulu captions some things and not others. Amazon Unbox does the same. And so forth. codeman38 pointed me to a recent post grading various online services on how well they provide captioning and it’s an illuminating read.

‘…it’s a blame game. Apple blames studios. Studios blame Apple. Nothing gets done,’ codeman38 says, and the same holds true for broadcast. While the networks and cable providers have captioning available, individual stations decide whether or not to offer it in their markets. That’s why, for example, some of my readers at this ain’t livin’ report that Glee airs without captioning while others say it is captioned.

Deaf and hard of hearing folks have been campaigning hard for captions for a long time. Marlee Matlin is a major champion of captioning for online content specifically. Captioning is a huge accessibility issue, especially online, where sites routinely provide video that is not captioned or described. This isn’t just a problem for folks who are Deaf and hard of hearing. It’s a problem when content is only accessible in certain countries; if I post a Hulu video, for example, only people in the United States can view it. It’s a problem for people with visual impairments, for people who have difficulty watching and processing video, for people with bandwidth restrictions, for people who are at work and don’t want to disturb people. There are all kinds of compelling reasons to make captions and descriptions of video content universal.

Apple claims to be ‘committed to accessibility.’ Yet, like a lot of companies and websites that talk a pretty talk about accessibility, Apple falls short of actually living up to the claims.

The Internet is an accessibility nightmare, and very few people seem concerned about it, unless they have disabilities that make interacting with digital content challenging. When Marlee Matlin can’t convince Apple to commit to captioning all of its content, how can unknown disability rights activists hope to accomplish it? When numerous campaigns pleading for accessible content get ignored, when captioning is considered a ‘special feature,’ it sends a very clear message. That message is: We don’t care about you. We don’t care if you can access our content. You are not someone we are interested in having as a viewer, reader, or customer.

What can we do about this? Well, we could start by sending a clear message to companies that don’t care about accessibility issues. How would Apple like it if customers boycotted content that wasn’t captioned? How would Hulu like it if people refused to watch or link to videos that were provided without captions? How would the networks like it if people canceled their television service until local affiliates started using captions? If folks who don’t need captioning still identified it as an important feature or even a dealbreaker, companies that aren’t providing it would start to take notice and do something.

Putting the onus for accessibility on the people who need accommodation is unreasonable. And it makes the problem seem like one that only applies to ‘those people.’ The toleration of the attitude that it’s ok to routinely deny access to a group of people is what leads to widespread inaccessibility.

Signal Boost: Interview Subjects Needed in Phnom Penh

Ann Kwan is a master’s student ‘exploring the optimal combination of formal education and informal training that would best provide a young person with physical disabilities a fair chance at competing in the normal Cambodian job market.’ She’s looking particularly for people who can bring a gendered experience to the issue.

She tells me:

I will be using the NGO YODIFEE (Youth with Disabilities Foundation for Education and Employment) as my primary case study, however hope that my findings will be applicable across the board to similar NGOs. As such, in general, I am interested in finding out different practices that have worked, how they might have been improved, whether they have allowed the youth in question to attain not only a reasonable self-sufficiency, but also self-confidence and hope for their future (at least similar to the average young person in Cambodia). Other areas that my research will cover include whether tertiary education for people with physical disabilities yield them the same opportunities as people without disabilities, whether it is a matter of infrastructural lack, knowledge lack or a general mind-set that makes non-sheltered employment less accessible to people with disabilities, and means through which these can be feasibly tackled.

Anyone who is available in Phnom Penh for interviews between 11 June and 16 June, or has resources you think might be helpful, can email her: kwan.ann818[@]gmail[.]com