Trouble Is Everywhere

As most people who know me already know, Don is a full-time wheelchair user. In addition, he is a regular user of our medical system - he needs to have regular tests to ensure that his heart is still healthy, for example, and he needs to have various levels of things checked regularly in order to ensure that his thyroid replacement drug is working properly and his blood pressure isn't wonky. These are the sorts of tests he needs to keep him alive.

Since moving to Ontario, Don has been referred to two different medical clinics for evaluation of these. He was referred to both of these clinics by doctors who were aware he was a wheelchair user since they physically saw Don in his wheelchair when referring him, and also because they were referring him for things that need to be checked because of his Marfan's Syndrome, which is why he uses said wheelchair.

Don has been to two different medical clinics in Toronto, exactly zero of which have been wheelchair accessible.

A few months ago he needed to get into one clinic for a blood test and urine test. Most people can complete them both in the clinic. Don had to take things home and pee in a cup here because the washroom was completely unsuitable for people with mobility issues or people using wheelchairs, which meant Don had to make two trips - trips that take far more out of him than they would out of a non-disabled person.

The clinic today, which was ultrasound for his aorta, was not only clumsy in dealing with people who have unusual heart conditions (like, say, someone with Marfan's Syndrome), but their washroom was inaccessible to people with mobility-related issues or using wheelchairs, as well as having narrow hallways and doors that made navigating very difficult for someone in an electric chair.

The common response of people who are afraid of the Access for Ontarians with Disabilities Act (AODA) and similar legislation in the US is that if there's a need, things will be taken care of. Everyone "knows" that people want to be accessible they just lack the knowledge or ability or something that will make this happen. You just need to ask nicely and it will be provided.

Medical clinics serve people with disabilities on a regular basis and they can't even get it together on accessibility. That's why we need these sorts of laws, because frankly it's too long to wait.

I know a lot of people skip titles of posts. Please read the title of this one.

I had an argument with someone at school on Thursday and it's still sitting with me. I think this is because we'd had an earlier argument on a similar subject on Tuesday. As you can probably imagine, it was about disability, or more specifically, about how disabled people have existed and advocated for themselves since long before the mainstream folks started paying attention, and well before I ever started paying attention.

The argument on Thursday was about my colleague's disagreement with the abstract for a master's research paper on disability discrimination in the Montreal Metro System. I'm not from Montreal, so the place this system has in Montreal was a bit much for me to grasp. Apparently it's a big thing, a progress thing. A thing about how Montreal has been advancing into the future. When it was opened in 1966, it was opened to everyone.

Everyone, of course, except people who can't walk up and down stairs.

The presentation and follow-up short video talked explicitly about ableist constructions of public spaces. She called it out very bluntly: this is discriminatory. This has always been discriminatory.

The part that others tend not to get, the part my colleague at the university didn't get, is that the people at the time knew this.

This is one of the things about disability-based discrimination that drives me up the wall. The theory that many people express is that no one in the past could possibly have been expected to think about disability as a category because this whole disability rights thing didn't start until [the speaker learned of it, whatever time period that is] and obviously not a moment before. (See: many feminist responses to disability-based critiques online that ignore even something as simple as the presence of disability activists at the Beijing conference in 1995. I've been told again and again and again that disability only became a "thing" to consider in the past few years and it's mostly "oversensitive" types at that. Arg.)

So, let me lay some facts on you:

The late 1960s and early 1970s, when the Metro was being built to be inaccessible to many people with physical disabilities, was also the time when people with disabilities were getting out of unwanted institutional settings. It's called "The Great Exit," and I'm pretty sure you haven't learned of it. The Great Exit didn't happen spontaneously, and it wasn't an austerity measure. People with disabilities campaigned for it. They fought for it. Just like they fought for employment and education in the 1800s and early 1900s in Nova Scotia.

Once they left institutions, people with disabilities fought for employment rights and to live free from discrimination. To some extent, they won. The Quebec Human Rights Act included disability as a protected class, passed in 1975.

Except for transit users. Explicitly, transit was not included, you could not sue for a human rights violation for not being allowed on a bus if you were disabled.

In 1988, ADAPT (a US-based protest group) came to Montreal to highlight how inaccessible the transit system was. This PDF has some of their information [in English] about the protest. It was all over the news, and people were arrested for crashing through barricades with their wheelchairs.

And still, the Metro remained inaccessible. In fact, it wasn't until 2004 - Sixteen Years Later - that the law saying that you couldn't sue for inaccessible transit was struck down, and it wasn't until 2006 that a Metro station was made wheelchair accessible. And even then, it was a debate, and one that apparently was won because it "looked bad" that the Metro was still inaccessible. Not that it was bad, that it looked bad.

The Metro in Montreal is currently being retrofitted to be accessible. The current rate is less than one transit station becoming accessible per year. Again, The Montreal Metro System will be fully wheelchair accessible in 2058.

My colleague argued that it is wrong ("presentist," the worst thing to accuse an historian of being within the discipline) to chide people in the past for not thinking of people with disabilities when they made the Metro. "They didn't know better then. We know better now."

This is a lie. They knew. Disability-based historians and disability rights activists know how far back the fight for equal access goes. It didn't spring, fully formed from the head of Hephaestus, in 1995 in Beijing. It didn't suddenly arrive the day you first learned of it. It's always been here. In ignoring that, in assuming that his ignorance is in fact the truth, my colleague (and many others like him) are betraying their own attitudes about disability, about history, and about what matters.

Don will be 78 years old when he can physically get into every Metro station in Montreal. The lifespan of people with Don's disability is less than that.

Hey Everyone! Let's play a fun game! Let's play "How much hatred towards people with disabilities can one location support?" A fun and exciting game that leads to wondering how many people sitting in the same room as you wish you would die.

(Exclamation Marks are Sarcasm Indicators.)

( I am a cut tag for your scrolling-by enjoyment! )

Yesterday did not go according to plan, so I've decided not to discuss today's plan in the hopes that this means the imp of the perverse will not hear of it and ruin everything.


marshtide wrote about how archaeologists determine the sex of a skeleton.

zingerella wrote about etiquette rules for visiting Government House, which include reminders not to molest the hat rack.

sid asked about turns of phrase in English that have survived well past the things they refer to, such as "lock stock & barrel".

licht has written Waffle Dos & Don'ts, which a) amuses me far more than perhaps is necessary (Waffles may bring about world peace!) and b) makes me think of bubusquared because of her constant assurance that Belgian Waffles do not come from Belgium. (I assure you, if you don't have a Melle in your life, you are missing out.)

adsartha wrote about migraine triggers.

marina wrote about disability-related issues in Israel, discussing accessibility legislation and universities and the IDF.

shanaqui wrote about Health Anxiety/Hypochondria.

I've really liked pretty much every episode reaction I've read to The Impossible Astronaut. Here is boji's, which I liked a lot.

pipisafoat wrote about shopping for clothing when genderqueer.

I made a post a few days ago inviting people to basically ask me to talk about disability history FOREVER. But it is also open to other people to talk about disability history forever. Please feel free to leave prompts or write responses!

[I have Dreamwidth invites if people would like them.]

Hey so-called Progressives: Disability is not your fucking punch line and I hate you.

Wherein Wonkette dedicates a whole fucking post to mocking Trig Palin for being "r#tarded", because it's very progressive to mock children with disabilities! Seriously, it's a disgusting article. Read this description at adage instead.

(Oh, but see, they're mocking SARAH PALIN for "using her son as a political prop". Which is why they put up a post that implies that Trig is the product of incest between his father and sister, say that children with intellectual disabilities don't dream, and implied that he was born disabled because his mother drank while she was pregnant. Not, you know, just saying "This shit where Palin uses her son as a political prop is wrong." No no, they're mocking her by making him - and all children with disabilities by extension - the butt of the joke. Ha ha ha ha. ha ha. So creative. Gosh, those progressive sure are on the side of people with disabilities, right?)

And, of course:
Lady Gaga Calls Madonna Plagiarism charges r#tarded.

GOSH I'M SO GLAD THAT I HAVE PROGRESSIVES ON MY SIDE. It's been mere hours since I was last told that ableism wasn't a real thing because people with disabilities are treated with "kid gloves".

Well, in general I'd say no one, but apparently I am wrong! This is both strange and a bit frightening, even though of course the difference between talking about disability and doing something that impacts on the lives of Actual Disabled People are two entirely different things.

The Council of Canadians with Disabilities (the CCD) have sent out a press release informing everyone that the Liberals have actually put disability-issues on their platform. I tried to find this information out on the Liberal website, but I struggled. See, their website is a mess of inaccessibility, which I know they've been informed of because I informed them of it. WebAim detects 46 accessibility-related errors just on their front page, and none of their videos provide actual captioning. Lucky we have YouTube auto-captions to the rescue, right?



Description: It's a screen capture from a YouTube video. Michael Ignatieff, an older white politician, is captioned as saying "And we met start ninety one for you".

Larger versions of the image are available.

I would tell you what he's actually saying but I have an ear infection so I have no idea. And neither would the indeterminate number of Canadians who are Deaf or Hard of Hearing.

You can watch the video yourself, though.

When I did finally poke around on the website, all I found about the Liberal election platform on disability wasfamily care and a national pharmacare plan.

(I will address the national pharmacare plan briefly: I think it's relatively pathetic. I know I should be all happy because pharmacare! but all I can think is "Okay, yes, catastrophic illness, go you! But what about chronic long-term ones?" It's possibly this will be covered, as they mention diabetes and arthritis, but they specifically use the language of catastrophic illness.)

The Family Care plans that have been bandied about by the Liberals and Harper have been really firmly aimed at a particular demographic: two-income homes where either a child or an elderly parent is in need of long-term care from a family member (because the hospitals refuse to accept them because they're too sick to treat). I know this because of what they're offering. Harper offered a $300 tax credit to people who stay home to take care of a family member. The Liberals are offering either six months of EI benefits or, to people who do not work in jobs that contribute to EI, a "Family Care Tax Benefit", which is a monthly tax-free payment.

Gentle reader, let us consider that "Family Care Tax Benefit" for a moment. This is the thing I'm supposed to be most impressed with, the thing that is most likely to help my family.

First, some background: I am the caregiver to my wonderful husband, Don, who was born with Marfan Syndrome. In July of last year his health took a series of hits, and by January of this year he was in bed basically 24 hours a day except for twice a day trips to the bathroom. He is taking enough pain relieving drugs that he cannot operate a stove safely, he cannot risk a shower even with the shower chair, he has difficulties keeping track of how many of his meds he's taken, and just earlier this week flew into a panic because he couldn't find one of his medications because he had completely forgotten that I had handed him the new prescription the day before. Many of his current problems are being blamed on his gastro-intestinal issues that cropped up in July, and the current theory is that once those are actually treated, his pain levels will drop, he'll be able to go back on his lower-dose medications, and he'll go back to being able to get out of the house three or four times a week, run errands, take care of the garbage and recycling and laundry, and all of those things that he does when he's not crippled by the health care system. His GI appointment is on Thursday.

I've taken off three months this year in order to care for him.

The hospital tells me that this has nothing to do with his health at all, while simultaneously telling me that they're sending him home instead of admitting him because he's got someone at home who can help him with tasks like eating and going to the bathroom.

Okay, so, here is our household, where there is only one adult who is able to work, rather than two, because the other adult in the household is permanently disabled, and the working adult has had to take time off to care for the other.

How much money do you think we would need in order to run our household and ensure Don received regular meals he can eat (which right now is limited to dry cereal, apple sauce, pudding, and frozen waffles), the power and phone stayed turn on, and we could afford the medications that he needs to live? Oh, and rent. Absolutely nothing else: not internet, not fancy meals, not even food enough for me, just food enough for Don. Just, add that up in your head.

The Liberals think it's, at the maximum, $112.50 per month.

Oh, but Anna! You should have savings! Things you can draw on. And yes, gentle reader, we do. We are currently living off money that we have been gifted by extended family members. We can do this because our families have both regularly been sending money to support us. If we didn't, I'm sure I would have to go back to working two jobs in order to have enough money to keep Don comfortable and ensure he was never out of meds, because that's what we had to do before. And when you're working two crappy-paying jobs, you can't find the time to get out of either one of them into something that pays better. And how much of my income would end up going to someone else to take care of Don (or at least check in on him) because I'd never be home?

"Poverty Eradication Plans" often do not include people with disabilities because the costs associated with living with disabilities are quite high. People with disabilities are disproportionately living in poverty: while 10% of Canadians overall live in poverty, 15% of Canadians with disabilities do. They end up doing things like splitting their life-saving medications to make the prescriptions last longer. They don't take their meds and get sicker. They don't get access to things like canes or walkers or wheelchairs because those things cost money and the amount of paperwork required to get in on charities that will pay for them is very high. It is difficult to get work when you're disabled. It is difficult to access community supports when you're disabled. It is difficult to get housing when you're disabled.

$112.50 per month, and that's still more than the Conservatives are offering.

According to the Council of Canadians with Disabilities, this is what the Liberal platform includes:

• An "action plan" for implementing, monitoring and reporting on the UN Convention on the Rights of Persons with Disabilities, which Canada ratified in 2010.


• Restoring funding to the Court Challenges program, which has been used by Canadians with Disabilities to force Via Rail to follow the law and have wheelchair accessible train cars.


• The Liberals have "promised to address the housing needs of persons with disabilities" in their Affordable Housing plans

I promised I would vote for the first party I felt was actually going to address the needs of Canadians with disabilities. I've been encouraged to vote for the Liberals because of these highlighted issues.

Perhaps this post makes it clear why my vote is still up for grabs.

Happy Monday Morning. My day today is filled with Things To Get Accomplished, but my Sunday eve has been filled with sleeping! This is very exciting.

Awesome Road Trip Plan!!! Let's all get together at the end of May and go to historic downtown Fredericton! We could check out the archives, and do whatever else it is to do in Fredericton, and then go to the Labour History Workshop! It'll be so much fun! There's simultaneous translation from both French & English! They will feed us! It'll be awesome! C'mon, the Fandom Con Goers can't have all the fun with their FogCon and their WisCon and their WhateverCon! Historians of the world Unite! We could call it LabourHistoryCon!

...

No?

:(


Filed under "Yes, there's a modern-day eugenics movement" (because I'm still irritated about that whole conversation, so expect this to become a Thing):
( But eugenics is in the past, Anna! )

Filed under "Disability 101: Service Animal Etiquette"
( Do not pet working service animals )

I got the best spam contact on LJ today from someone on Facebook offering me the opportunity to try and sell Canadians on expat insurance or something, I don't even know. I'm so happy that Livejournal has made it possible for such people to contact me! /sarcasm

There's a thing going around right now where certain government have decided to move to a charity-based model on public services such as libraries, schools, hospitals, and services for vulnerable populations such as disabled people.

Funny this should come up right now when I've been examining the impact of funding-related decisions such as this on educational facilities for students with disabilities in the late 19th Century. You know, when a lot of Victorians got together and went "This whole funding of public services such as libraries, schools, hospitals, and services for vulnerable populations such as disabled people needs to stop being charity based and come out of taxes."

Funding based on charity appeals is not just bad for Institutions, and it is not just bad for the people served by these Institutions. It also has long-term problems for society.

So, let's talk about my area of expertise: residential-based schooling for children with disabilities.

When the Asylum for the Blind needed to struggle constantly for money, a large part of their activities were based on, in essence, begging for money to support the school. They were constantly having to turn down applicants because they didn't have the funding to take on any more students. They couldn't effectively budget because charitable fundraising is always a crap-shoot that could end up with far too little money to feed the children in their care. They were very limited in what new programs they could introduce, had limited success in retaining teaching staff, and were unable to send their staff to other Institutions to learn how to teach blind students.
( Read more... )

Did you know that the folks behind Glee were explicitly invited to a best practices panel on disability at a major industry conference in Hollywood this past summer and turned them down?

Because, I guess, actually working with people with disabilities in the industry to talk about representation and stuff is too much work for someone getting awards for diversity while publicly mocking disability rights advocates and activists who have talked about the problems with Glee and representations of disability.

I will have more details about this later.

Jody McIntyre's got a blog post up at the Independent: Who's Apathetic Now?

I really admire Jody a lot - I think I mentioned before that I admire that he kept bringing the issues back to what he thought was important - less that he as a wheelchair user had been attacked by police, and more on how many other people were and how it wasn't even remarked upon. (Being that I get most of my UK news via blog posts, twitter, and outraged emails from friends, I had no idea that Alfie Meadows' near death experience that included the police demanding that the almost-dead bleeding in the brain kid be sent to another hospital, even though he might have died, was not reported in the mainstream media.)

Anyway, what I really like about McIntyre here is that he's seizing the opportunities given to him and using them effectively. He knows people want to hear his views right now so he's expressing them clearly and effectively in as many different venues as possible.

I don't think I could do the same. I've been contacted by reporters more often than you might think after standing up about disability rights and often try to firmly but politely refuse their interview requests because I'm going to come across as a screaming harpy who wants to kill everyone. (Note: I don't want to kill everyone. Just some people.) I get all red faced and blotchy when I'm angry as well, and thoughtfulness kinda slips out the back door while I'm busy gesturing wildly and talking about "rioting while crippled" and use terms like "work disincentive" without really explaining what they mean.

Anyway. Jody McIntyre is doing an awesome job of combating some of the stereotypes disabled people in the UK run up against all the time. He is both visibly physically disabled and an active activist. I think the reason he's getting so much attention is that this blows people's minds, even though so many disabled people/people with disabilities I know are like him in temperament and fierce determination to be heard.