Category Archives: othering

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Accessibility is Not An Individual Problem

If you spend a lot of time talking or writing about accessibility, someone will eventually tell you this apocryphal story:

When Steven Hawking (and it’s always Steven Hawking) started teaching at Cambridge, they needed to put in ramps in all of the buildings, since they all had those beautiful huge sets of stairs as the only way in. One security guard (and it’s always a security guard) protested. “What are you doing that for? I’ve been working in this building for 30 years, and not once have I seen anyone in a wheelchair come through those front doors!”

(I know when people tell me this story I’m supposed to laugh. It’s kinda hard, though: I’ve basically been told exactly that by university administrators; professors; graduate students; student representatives; municipal, provincial, and federal candidates and elected officials; bus drivers; taxi cab drivers; small business owners; large business owners; Fox news commentators; bloggers of a variety of political stripes; apartment building managers; independent book store staff; national chain bookstore staff; people who run on-line campaigns, tea shop staff, coffee shop staff….)

I think what I’m supposed to get out of this story is the ha-ha, look at the ignorant person.1 What I end up getting out of this story is that the burden of pushing for something to be accessible pretty much consistently falls on people with disabilities themselves. We have to ask because no program, no building, no website, will be willingly designed with the idea that people with disabilities are part of a broader target audience. Only websites, buildings, and programs aimed right at people with disabilities will do so. 2 (Until laws are passed, of course. And even then the law will be only grudgingly followed.)

Accessibility is often treated like a favour that non-disabled people do for (or even to) disabled people, one that is given out of the goodness of one’s heart. It’s an individual’s problem to bring up, and the solution is for individuals to come up with.

This attitude comes up in lots of different ways, both online and off. To focus specifically on what larger entities do:

– The issue of subtitling the political ads on YouTube is brushed aside because D/deaf people apparently don’t complain enough about subtitling for politicians to bother subtitling their ads.

– I am on the planning committee for a conference and was told that if actual disabled people signed up for the conference they would bother moving one of the events to a wheelchair accessible space, but otherwise they’d keep it in the room down a flight of stairs because it’s a nice room.

– As I have also pointed out before, having your requirement for receiving funding to complete your education being “student leadership” while simultaneously telling students with disabilities that they’re not able to attend events that are sponsored by the university (which is what having your event up two flights of stairs not suitable for “the very elderly or disabled” is doing) is telling students with disabilities that they can’t get the funding to complete their education. And yes, student funding in Canada is increasingly tied to poorly-defined “student leadership.”

When I point out these issues, I’m often told that these are individual problems: D/deaf people need to complain more! More people with disabilities need to attend conferences! Here, let me give you a list of individual solutions! It basically asks people with disabilities – people who already have a lot on their plate – to do more. And it often puts people in the situation where they may find a solution for themselves, but it’s one that leaves everyone else – whether friend, ally, or fellow traveler down the road – to sort out their own individual solution. To re-invent the wheel every time.

This isn’t the way this needs to work.

How it needs to work: Assume people with disabilities exist. Just like we assume people without disabilities exist.

So, politicians should make their political ads with both disabled & non-disabled people in mind, and thus the idea of subtitling isn’t one that’s new or unusual to them, it’s one they thought of all along. (Bonus points: maybe they could think of actual disabled people when making their platforms, too.) Plan events without assuming that everyone attending is going to be non-disabled. Then no one has to say “I’m disabled, I can’t go down a flight of stairs.”

We don’t act like putting a door in the front of our building is a favour we are doing. We assume that doors are necessary. And yet, people treat having a ramp to that door as a favour they are doing, when the ramp serves the same purpose: it allows people to come inside.

  1. I’m not particularly exploring the class issues here, but that’s only because I’m focusing on disability and not because I don’t think they’re there. Of the dozen or so times I’ve been told this, roughly half have had the teller start mimicking a “lower-class” accent when repeating the security guard’s words.
  2. Before the website upgrade last month, the only page on my entire university website that passed an accessibility challenge was the Student Accessibility Office website. Because of course that’s the only website that a student with a disability will look at, right?

Today in Journalism: You Used the Wrong Lede

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

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

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

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

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

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

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

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

This quote is illuminating:

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

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

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

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

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

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

We also have the right to be in public

This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…

I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.

These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.

I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.

This is ableism.

Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.

I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.

These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.

One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.

All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.

Extra Homework for PWDs

I’ve recently gone back to school and today had my first class session. This week has consisted of various orientation activities, meeting the faculty, sessions on academic integrity and what constitutes plagarism, learning about the library and the career services office, all that kind of thing. I’ve finished each day exhausted and unable to do anything more than flop on the couch – as has everyone else in the incoming class.

The first thing the professor did today was say that this was her return to teaching after serving for several years in a university position to increase diversity. The second thing she did was announce her rules for the 3 hour class – no laptops, no cell phones, and no eating. And I cringed. My disabilities don’t really require accommodations for any of those policies. I have the hand strength and fine motor control to take notes by hand, although in the past when I’ve had more problems with muscle tremors, I’m not sure that I would have. I also don’t need a cell phone alarm to remind me to take meds at specific times, or to record the lecture or discussion for me to refer to later. One of the meds I take requires me to keep my blood sugar and salt levels fairly stable, so I sometimes find myself in a crisis and needing to eat something immediately, but I could make sure to eat right before class and keep something in my bag to eat during the 10 minute break if I needed to.

So I’ll be ok – which is good, because just imagining what I would have to go through to get an accommodation made me even more exhausted than I already was. My first step would have been to talk to the professor about the policies and ask for an accommodation. Frankly, I found her somewhat intimidating and not super approachable based on her initial lecture and the idea of disclosing my disability status to her was not exceptionally appealing. If I’d needed the accommodations during the first class session, I would have had to interrupt the entire class to ask to speak with her outside, alerting everyone there to my special needs. She explained to the class that the exclusion of laptops and cell phones was designed to facilitate and encourage class discussion and minimize distractions during the class session, so I can imagine that she might have made an exception to that policy for accommodation needs. But she explained her exclusion of food was because she “didn’t want to hear you chomping on a sandwich,” which would still be a problem if I were eating for disability reasons.

In either case, it would have been immediately and obviously apparent to the other students in class that I had gotten permission to violate the stated policy. Given that the laptop and cellphone ban was not enthusiastically received by any of the students, I am sure I would be questioned about why I got to have a laptop, or why I was special, and why couldn’t they have one too.

But imagine that the professor did not agree to provide an accommodation, or that I needed the support of the Students with Disabilities office to make the request or document my need for such an accommodation. I identified myself as a student with a disability on my application materials, but I believe that information was simply for diversity purposes, rather than identifying me to professors or to the Students with Disabilities office. I would have to call the disability office to schedule an in-person intake appointment. I have no idea if they require documentation of my disability – I don’t have any medical records documenting my diagnosis and so would have to request those from my psychiatrist.

The mere thought of going through all this made me weary.

How could this have been avoided? I think if the professor had announced the policies and then added “if anyone needs disability accommodations regarding any of this, please talk to me during the break or after class.” Signaling awareness of the possibility that students may need accommodations and willingness to discuss and provide those accommodations would have eliminated a lot of my potential concerns in less than 10 seconds of extra time.

As it turns out, I’m dropping the class for other reasons, so I don’t need to follow up on the eating issue. Which relieves me greatly.

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

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

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

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

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

Section 15 is the important one here:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dear Megan,

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

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

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

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

Thank you,

Anna P.
cc: Jack Layton

In The News: Toronto StarUPICBCGlobe & Mail

Tell The Discovery Network that their transphobia is unacceptable

Late last week, PinkyIsTheBrain on tumblr began a campaign to bring attention to the new Investigation Discovery show “Who the Bleep Did I Marry?”, which equates someone being trans* with being a serial killer, a con artist, or a bank robber.

[Note: If you’re unfamiliar with Tumblr, it can be a bit hard to navigate. “Conversations” or comments or follow-up tend to be nested.]

Transcript:

Music plays in background: “Love and marriage, love and marriage”

The video opens on a scene of a wedding in an idyllic location surrounded by trees with an arbor of flowers. The camera zooms in on the bride, who turns and says:

(Marriage officiant in the background): Join this man and this woman in holy matrimony.

First Bride: Five years from now, I’ll find out that he’s a bank robber.

The camera cuts to a different couple, walking under a portico with their backs to the camera. The bride turns to the camera and says “Serial murderer.”

A zoom in on another couple, standing like they are being photographed with their families.
Third Bride (loud whisper): Russian spy!

Another couple, cutting a cake.
Fourth Bride: Cheater. With three other wives.

Another couple, surrounded by a crowd, the bride sitting on a chair while her husband kneels to pull off her garter.
Fifth Bride: And he’s a… a she.

(Gasps)

(Kissing noise.)

We cut back to the original couple, kissing at the altar.

The closing shot is of a fancy black car driving away, trailing ribbons, tin cans, and toilet paper. ‘Who the (bleep) did I marry’ is chalked on the back window.

Marriage Officiant (sounding disgusted): Who the bleed did you marry?

Voiceover: Who the bleep did I marry? All new [episodes?], only on Investigation Discovery.

This is not just a ridiculous comparison, it’s a pretty damned offensive one that equates being trans* with being a serial killer – and once again equates being trans* with lying, which is the same argument that murderers make with they murder trans* people.

FuckYeahFTM looked up the contact information for the Discovery Network, encouraging people to get in touch and point out how bloody offensive and shitty this is:

Here’s more info about the show:

Who The Bleep? [Opens with sound & Video]

The other episodes they have include: Married to An Embezzler, The Biggest Con, Married to a Spy, Married to A Bank Robber

And they are including marrying a transman, or in their words “He is actually a She” on that level, with criminals and murderers.

Discovery doesn’t actually make it easy to contact them with concerns (I had to use a search engine to find the Contact page because it wasn’t anywhere on the Who The Bleep? page), so here’s how I did it:

32. How can I contact you with programming comments or questions?
We welcome your e-mail comments and questions, which you can send to us by clicking here.

This is the most efficient way to contact us. Comments or questions directed to anyone else at Discovery Communications will be forwarded to Viewer Relations, which means it will take us longer to follow up.

You can also write to us at:

Discovery Communications
Viewer Relations
One Discovery Place
5th Floor
Silver Spring, MD 20910

There is actually a lot of “required information” before Discovery will let you contact them. They want your age, your name, what network you’re writing about (Investigation Discovery in this case), post code, Cable provider, program time, and “information needed” (along with several other pieces of non-required information) before you can fill in your comment. I believe it’s five steps before you can tell them what your concern is, the site is very slow (at least for me), and I have no idea how accessible it is. (It does not like my computer at all)

However, reaching out and making it clear to Discovery that this stuff is not okay, that being trans* is not a crime, is not lying, and is not the equivalent of being a “Russian Spy” or a “Bank Robber”, is important, and I hope as many of you as possible will contact them and make that clear.

This is what I wrote, if you are looking for a template:

Hello Discovery Network,

I am disgusted and appalled at your decision to equate being a trans man with being a criminal, a spy, or a murderer. A trans man is not “really a she”. He is a man who married a woman. The decision of your network to “out” someone like this is especially dangerous, as many trans people are murdered for allegedly “faking” or “lying” or otherwise “cheating” their sexual partners.

I hope you will reconsider your decision to air such an exploitive, dangerous, and abusive program.

Again, here is Discovery’s Contact Form. I emailed them last week and have so far received only a form letter, but if we overwhelm them with numbers, surely they have to pay attention, right?

Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

World Suicide Prevention Day

Description appears below
A golden butterfly in a circle, with "Support Suicide Prevention Awareness"
Today, September 10th, is World Suicide Prevention Day.

Being suicidal, especially if you have long-term thoughts about suicide and suicide ideation, can be a very isolating and lonely experience. Do you tell your friends and family? If you do, how will they react? What about your job? Will you be forcedly committed into psychiatric care? Will people assume that if you haven’t actually harmed yourself, you’re not really suicidal and just faking it for “attention”? If you’re happy and having a good time today, does that mean you’re not really suicidal at all? What exactly do you say, and who do you say it to?

These are the things I wish I could tell you:

Be as kind to yourself as you can. If you are having long-term suicidal thoughts, you are ill. You are not weak, you are not failing, you are not letting anyone down. You are sick, and just like if you had a bad cold, or some sort of infections, you need to take care of yourself, and let your body and your mind recover.

There is not a quick fix. Talking to a friend, or a professional, or a help line, taking medication, spending some time in short or long term care, these are all helpful but take take time, something you can take as much of as you need. I wish I could promise you that talking to someone would force your mind and your body to heal, but it won’t. This is not because you’re a failure, but because you are ill, and again, you need to give yourself time, because you are not a failure, and you are not letting anyone down.

You do not have to be perfect. Just like someone with a cold or an infection may skip their cold medication or their antibiotics, and as a result may get sicker or set back their recovery, you too can end up screwing something up. This does not make you a failure, and you have not let anyone down. You are still worthy of getting the help you need, and you can still reach out to people who want to help you. Again, there is no quick fix, and you are allowed to make mistakes.

I cannot promise you that everyone around you will be accepting. It is not unusual in my travels through the internet to find people writing about how people who attempt or commit suicide are “selfish” or “bad”. These people are wrong. You are ill, and that is not the same thing at all. But there are people who are trained to help you, and are willing to help you in the road to recovery, no matter how hard or how long it is. Some of these people will be strangers, and some of them will be friends or loved ones. I know it’s socially isolating and scary, but please try and reach out, because they want to help you. Here is a small list of resources that may be helpful to you.

Your pain, and how you feel, it is all real. You are allowed to feel these things. You are allowed to be who you are. None of this makes you bad, or undeserving, or unlovable.

I hope you find what you need.

Body Image & Disability: An Entry Into The Conversation

A long time ago, I said this:

People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.

Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.

But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.

These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.1

At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.

I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.

As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!

I think there’s so much here to talk about. Please, tell me your thoughts.

  1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.