Category Archives: invisibility

Reactions, part 1

[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]

I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.

Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.

The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.

My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.

When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.”  The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.

Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.

The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.

And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.

For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).

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.

John Stossel Wants YOU! To Be Afraid of the ADA

Not being from the US, I had this idea in my head that the Americans with Disabilities Act (ADA) must be awesome. I mean, come on! It’s been 20 years now! Ramps to every building, disability friendly policies, accessible washrooms in every hotel lobby! I get all starry-eyed just thinking about it.

People with disabilities who have actually been in the US are probably either rolling their eyes or giggling at my naivety.

In the last few weeks, I’ve read about airlines being fined for not following the ADA, despite repeated complaints from customers that they hadn’t been, continuing issues with post-secondary education, online content, and accessibility for students who are blind or otherwise vision-impaired (no mention of blind or visually impaired teachers) and students needing to sue in order to get attention to the fact that the new content delivery system was not accessible to them (again, no mention of blind or visually impaired teachers), the Attorney General of Massachusetts needing to step in to demand movie theater chains provide accessible content in all their theaters… The list goes on, while “advocates” tell people with disabilities not to sue because it upsets the non-disabled when they do.

And maybe those “advocates” have a point. Because even though one can find example after example after example of law suits – threatened or actually carried out – before businesses, universities, and even government offices will follow the ADA and “allow” people with disabilities the “rights” they’re guaranteed in the US, some folks still feel the need to produce opinion pieces claiming these lawsuits are frivolous and that the people who take them on are parasites (Content Warning: John Stossel).

Under the ADA, Olson notes, fairness does not mean treating disabled people the same as non-disabled people. Rather it means accommodating them. In other words, the law requires that people be treated unequally.

The law has also unleashed a landslide of lawsuits by “professional litigants” who file a hundred suits at a time. Disabled people visit businesses to look for violations, but instead of simply asking that a violation be corrected, they partner with lawyers who (legally) extort settlement money from the businesses.

Some disabled people have benefited from changes effected by the ADA, but the costs are rarely accounted for. If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare? Extra-wide bathroom stalls that reduce the overall number of toilets are only some of the unaccounted-for costs of the ADA. And since ADA modification requirements are triggered by renovation, the law could actually discourage businesses from making needed renovations as a way of avoiding the expense.

I feel like I’ve taken apart aspects of this argument before, mostly because it seems the arguments get repeated over and over until one wants to make a Bingo Card and be done with it. But, to save me some keystrokes: Let’s Bust Some Myths: People with disabilities just want to sue the world into compliance (there’s a transcript to the video linked there in the comments 1), Needs Are Not Special and Accommodation is not “Special Treatment” (written by s.e.), Why Being Nice Isn’t Enough (which is meant to address the “just ask for accommodations!” part), “Bad Cripple” – you know, the fakers who are just scamming the incredibly generous disability system for the huge cheques they can rake in – oh, and we’ve got multiple posts just here at FWD about workplace accommodations being treated like a huge drama and a favour that doesn’t need to be granted rather than a right, people who work with actual people with disabilities assuming all people on prescription drugs are dangerous addicts, and how the opposite of disabled is not employable.

I think my favourite bit of the quote above, though, is the “If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare?” I love that sentence, I want to cross stitch it on a little sampler and hang it up on my wall.

A Very Short List Of Businesses You Are Unlikely To See Wheelchair Users In:

1. Ones that don’t have a ramp to allow access to wheelchair users.

Seriously, that’s the basic criteria for shopping in this one-wheelchair-user household. We choose our restaurants, our coffee shops, our bookstores, our yarn stores, our sex toy shops, our grocery stores, our housing, our favourite tea place all on whether or not the shops themselves allow wheelchair users to enter. We don’t even go to one of the malls in the city because half the shops are too crowded to allow wheelchair user, so yes, John Stossel, if your business doesn’t accommodate wheelchair users chances are you don’t have many customers who are wheelchair users.

(Gentle reader, I cannot believe I just typed that sentence 20 years after the ADA passed into law.)

Honestly, that John Stossel is paid actual money to write opinion pieces that amount to “cripples are just sue-happy freaks, the ADA is why the Exxon oil spill happened, and service animals like snakes are ruining it for everyone else” – especially while service animals are constantly being turned away illegally – is especially irritating when we’re still fighting for something as simple as the right to be paid minimum wage for our work.

  1. Back when I wrote this I felt like I was making a very witty point by not “choosing” to be “nice” and putting the transcript up – if you wait for people to be “nice” then you wait a long time! I wouldn’t do that now because I think it’s shitty to make people sit around and wait so I can score some sort of political point.

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:


The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

An open letter to non-disabled people who use disabled parking spaces

Dear abled/non-disabled people without disabled parking placards who use disabled parking spaces anyway,

I don’t care if you want to use the space “because it’s so convenient.”

I don’t care if you only “need” to use the space “just for a minute.”

I especially don’t care if you back up your illegal use of said disabled parking space with some bizarre justification like, “But some people FAKE being disabled to get these permits, so what’s the difference?” or “Well, if a person in a car with a blue placard shows up, I’ll move” or “But there isn’t anyone disabled who needs to use the space here right now, so what’s the harm?”

The harm is that I or other disabled people are so often witnesses to your saying these things, and we are presumably expected to not react at all to your taking advantage of something that is not for you. I personally do not own a motor vehicle, so while I don’t need a disabled parking permit, I also don’t need your entitlement complex and your basically telling me — a person with disabilities — that some of the regulations intended to benefit me and people like me are rules that can be bent by you if it’s the most convenient option for you, an able(d) person.

Just don’t do it. It’s illegal and carries penalty of a possible fine for a reason.

This sort of legislation? Is not intended to benefit you, or be a convenient thing that you can take advantage of when you feel like it. Most of the world is already set up for you. These “convenient” parking spaces don’t have to be set up for your use, too.

Tracy Latimer is dead because her father is a murderer

It’s always hard for me to write a post about Tracy Latimer’s murder, especially in a space that’s got a lot more traffic than my own blog does. Where do I start? How do I express to a new audience the significance this case has in Canada, and how the murder of a 12 year old girl by her father 17 years ago changed drastically how Canadians talk about disability, and how disability is treated in Canada? Where do you start with that?

This post is going to talk about the murder of children with disabilities by their parents. I would recommend avoiding comments in most of the news links, because the comments generally turn into a referendum on whether or not it’s okay to kill disabled children.

Tracy Latimer, who had Cerebral Palsy, was 12 years old the day her father, Robert, waited until the rest of their family was at church and then carried her out to the garage, stuck her in the cab of the truck, ran a garden hose from the exhaust pipe into the cab, and left her there to die of carbon monoxide poisoning. Whenever I talk about this case, I feel the need to remind the reader: this is a means of killing we have made illegal when killing dogs, because it is considered to be so painful. This is the murder people would like you to believe is a “mercy killing”.

Tracy Latimer’s murderer, Robert, then put Tracy to bed, burned the hose that he had used to murder her, and lied to the police about how she died.

This case went to trail twice, and both times Tracy’s murder was found guilty of murder and sent to prison. He has done the bulk of his prison time according to Canadian law, and is currently doing a form of parole where he spends five days in a half-way house, and two days in his own apartment in Vancouver. This is how the law works here – in fact, I would agree with critics that Tracy’s murderer is being treated harshly by the parole board, but I also understand they want Tracy’s murderer to admit that maybe killing a child and trying to hide the evidence is a crime and that he should show some remorse. But we don’t really send people to prison here in order for them to show remorse. It’s done, let him go home.

But let’s talk about how Tracy Latimer’s murderer and the court cases around him are typically treated by the press, since Robert is in the press again, having been denied a loosening of his parole.

You’ll notice, I’m sure, that I keep referring to this as “Tracy Latimer’s murder”. If you read the newspapers from across Canada, you’ll instead see it referred to as “Robert Latimer, a Saskatchewan farmer, who was convicted of second-degree murder of his severely disabled daughter”. You will also find it referred to as a “mercy-killing”. Often Tracy’s name will only appear once, as “his 12 year old severely disabled daughter, Tracy”.

May 21, 2010: The Vancouver Sun: Latimer mercy-killing inspires new Ozzy Osbourne song: “The 10th track of Osbourne’s solo album entitled Scream, due out June 22, is Latimer’s Mercy which describes what Latimer may have felt in putting his daughter to death. The lyrics are poetic yet brutally graphic.”

July 28, 2010: The Montreal Gazette: A Wise and Sensible Verdict (This article is actually about an entirely different case, but felt the need to compare it to Tracy Latimer’s murder): “One need only remember Robert Latimer’s killing of his severely disabled 12-year-old daughter. He did it, he said, to release her from her suffering, to mercifully end her life.

Does anyone believe Robert Latimer was a cold-hearted killer?”

July 29, 2010: The Victoria Times-Colonist: Mercy killing can sometimes be honourable: (Same case as the one discussed above) “Similarly, Robert Latimer had no moral choice but to end his daughter’s agony at once by one means or another.”

August 19, 2010: The CBC: Robert Latimer wins parole review “Latimer was convicted of second-degree murder in the 1993 death of Tracy, his severely disabled, 12-year-old daughter, an act he described as a mercy killing.”

August 20, 2010: The Globe & Mail: Give Latimer More Latitude in his Day Parole: “The board needs to accept that he has paid his debt to society. He killed from compassion, according to a jury and a judge, who knew all the details of Tracy’s life and death, and was punished as a deterrent to others.”

The case is fairly consistently presented to the Canadian public as a “mercy killing”, and as the end of Tracy’s suffering. Often Tracy’s life is described as unbearable. Sometimes she is referred to as a “vegetable”. The only person who’s “side” of this story is consistently told is the man who murdered his daughter, and he is painted by the press as a man struggling against impossible odds, doing the only thing he could.

This is not what you read in the press:

In the trials, both Robert and his wife Laura claimed that Tracy was experiencing constant and uncontrollable pain. If this were true then why were they allowing Tracy to suffer when her pain was medically controllable? Their testimony conflicted with the writings in Laura’s own diary pertaining to the daily condition of Tracy. Laura’s diary stated that Tracy was often happy and smiling, and lately she had been eating well. Tracy’s teacher described her as a happy and loving person who did not show signs of extreme and uncontrolled pain, even though she had a dislocated hip. Tracy was scheduled for surgery to repair her dislocated hip which would have alleviated the pain and discomfort she was experiencing. In fact, Robert Latimer was charged with homicide on the same day that her surgery was scheduled to happen (November 4, 1993).

Many people are under the impression that the Latimers were overly burdened and lacking in support and respite service to care for Tracy. In fact, Tracy had lived in a respite home in North Battleford from July until early October, 1993. Tracy had returned home because she was scheduled for surgery. Tracy was also at school everyday. On October 12, just twelve days before Tracy was killed, Robert Latimer was offered a permanent institutional placement for Tracy in North Battleford. He rejected the placement because he said he had ‘other plans’. At this time, he had already decided to kill Tracy.

I harp on the way Tracy’s murder is treated in the press for one simple reason: The number of murders of children with disabilities by their parents has drastically increased in Canada since the Latimer case.

December 5, 1994 – Ryan Wilkieson, 16, Cerebral Palsy, Carbon monoxide poisioning similar the Latimer murder, which was in the news at the time.  Friends of Ryan’s murder, his mother, said she was distraught by the Latimer case. Murder/suicide.

May 28, 1996 – Katie Lynn Baker, 10, Rett Syndrome, starved to death. She weighed 22 pounds at her death. No charges were laid, as no one believed they could get a conviction.

November 6, 1996 – Charles-Antoine Blais, 6, autism, drowned in his bathtub by his mother. Charles-Antoine’s murderer was publically offered a job fundraising for the Autism Society of Greater Montreal, and and the head of Canada’s national autism society described her life as a total misery before Charles-Antoine’s murder. Suspended sentence.

November 21, 1996 – Andrea Halpin, 35, cognitive disabilities – shot to death by her father in a murder/suicide. He didn’t think she could live without him.

December 11, 1998 – Cory Moar,  29, cognitive disabilities – years of abuse by family members. I couldn’t find any more details after the lengthy description of the long-term injuries he sustained, because I had to throw up. You can read the inquest results in this handy PDF. Trigger warning.

May 19, 2001: Chelsea Craig, 14, Rett Syndrome, lethal dose of prescription drugs (attempted murder/suicide) Rachel Capra Craig, diagnosed with paranoid delusional disorder, later killed herself. She had been found incompetent to stand trial.

December 30, 2001 – Reece Baulne, 34, “learning difficulties”, carbon monoxide poisoning. In the suicide note that his parents wrote, they said they were killing themselves and Reece because they couldn’t care for him anymore, having been turned down for government funding.

July 12, 2004 – Jia Jia “Scarlett” Peng, 4, autism, drowned in bathtub by her mother who has been diagnosed with Bipolar Disorder. Scarlett’s murderer was initially sentenced, but the sentence was put aside due to an error on the part of the judge. She was recently sentenced to 5 years, but was released because of “time served”.

July 31, 2004 –  Ian Carmichael, 11, epilepsy and undefined “learning difficulties”, choked to death by his father who was diagnosed as having psychotic delusions as a result of side-effects from taking Paxil incorrectly. You can read David Carmichael’s webpage in which he discusses (briefly) how he murder his son (most of the page is about how Paxil made him do it). Trigger Warning.

September 25, 2004 – Charles Fariala, 36, “assisted suicide” – he first took a dose of medication and then his mother tied his hands and covered his face with a plastic bag. Wikipedia says his mother had Borderline Personality Disorder and this was a factor in her light sentence (3 years probation), but I haven’t found any other reference to her having a mental health condition, just that there were “extenuating circumstances”.

These names are part of the reason why I think Robert Latimer should always be referred to as a murderer, why I think think Tracy’s death should never be referred to as a “mercy killing”, and why I will invite Robert Latimer apologists to kindly find their way to the Globe & Mail website, since they obviously will welcome your comments far more than I will. They will not be published here.

We convict and vilify people for murdering their children all the time. Unless their children are disabled. Then, then, then, it’s “mercy killing”, and they should be defended at all costs.

My Experiences with Disability & The Kink Community

Content Note: While this post isn’t going to talk about sex at all, and it’s only going to briefly touch on some things that get grouped under “kinky” sexuality, I would recommend against it being read at work.

Here is an image to give you a chance to back out! (Image is totally safe for work.)

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Image Description: A sign that reads “Wheelchairs and Strollers Please Detour Through Bears”

Via Accessibility Fail, who got it from Oddly Specific.

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Read more: My Experiences with Disability & The Kink Community

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

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

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

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

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

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

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

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

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

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

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

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

Assistive Tech & Pop Culture: “Miss Smith, without your glasses you’re beautiful!”

If you ever want to confuse people, tell them glasses are assistive devices that assist people with lower-level vision impairments, and then compare these assistive devices to such things as arm crutches or wheelchairs. In my experience, they’ll often insist that people who wear glasses are normal. (Not like people who use wheelchairs or arm crutches or any other type of assistive tech, no no, those people are disabled. And everyone knows you can tell who has a disability and who doesn’t just by looking at them, right?)

I’ll often introduce people to the idea that our image of what “disabled” looks like is constructed by talking about glasses as assistive tech, just assistive tech that is generally accepted by society. For a lot of people I interact with every day, getting glasses is routine, and you’ll see glasses everywhere on the street – advertisements for fancy glasses frames! and for new types of lenses! Glasses for everyone! (For certain definitions of “everyone”.)

At the same time, media & pop culture still use glasses as “code” – either for This Is Serious Work, or This Person Is A Nerd/Geek (and a particular type at that) or a scientist/doctor, or a Serious Scholar. This is true whether the person uses glasses all the time, or if they just use them for certain things. On Leverage, for example, when “the bruiser” character Eliot puts on his glasses he suddenly becomes totally sexy and I’d totally hit that because I’m shallow it’s usually an indication that his persona for the episode is Egghead/Nerd or Expert on something. Neal, who is a “recovering” con artist, does something similar in White Collar when he’s doing close-up nerdy-type work on his forgeries, or when his persona is “doctor”. I also clearly remember Elle Woods putting on her Serious Glasses and getting into her Serious Clothes for when she wants to be taken seriously as a lawyer in Legally Blonde. Glasses = Smart!

What brings this back to Glasses As Assistive Tech is that glasses are very normalized to people watching the shows, and yet glasses aren’t all the common as just a Thing The Character Wears in the show. I know why this is – glasses cause light-reflections, glasses make it harder to read someone’s expression on the screen, glasses can be dangerous in fight scenes, if they have lenses they can get scratched up and cause more problems, and if you’re not someone who wears glasses all the time I’m betting they’re distracting.

But, of course, movies and television aren’t the only media we consume. Comics, novels, and video games don’t have these problem. You can give every character in a novel glasses if you want, and it doesn’t really matter. And yet, when I was reading romance novels & chick lit all the time, I can only remember one heroine who wore them, and she went through the whole “Oh, but no one will find me pretty! Men don’t make passes at girls who wear glasses!” (And, despite her glasses being a huge thing in this novel, the cover art didn’t show her with them. Not that this is surprising, but still.)

So what does this have to do with anything? Well, glasses are assistive tech that is very normalized, and yet doesn’t appear very often in our media. When it does appear in our media, it’s often a code for something. This person is Smart. This person is Studious. This person in Playing A Role. This person is Eliot and his glasses make him really really hot omg why are there not more episodes of him wearing glasses and being friendly? And if we can’t see this incredibly common type of assistive tech in our media being used as just a Thing That People Wear, it’s no wonder we so rarely see people using assistive tech in our media just because Some People Are Blind or Some People Uses Arm Crutches or whatever.

Commenting Note: Sadly, I am still on Thesis Time, and likely will be until the end of the calendar year. Comment-approval/responding to will be slower-than-usual on account of this.

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