The Doctor and The Guillotine

Is there anything to say about the “Tory” (read conservative) ex-Deputy Mayor and physician in the UK who said that severely disabled children should be guillotined?

Sure … a few things:

- “The Daily Mirror” is, I believe, a bit like the “New York Post”, kind of a sensationalist rag, about as subtle as a sledgehammer. I’m not sure what that suggests about how to take the story, but I hope appearing in the paper doesn’t discredit the story itself, if it is, in fact, true.

- It sounds like everyone with any connection to this guy is falling all over themselves to denounce, investigate, and penalize him in some way. That’s encouraging, but it’s also easy to do, because his remarks were so inflammatory.

- I wonder what the reaction would have been if instead of referring to the guillotine, he’d used some more medical terminology, like “euthanize” or “withhold treatment”.

The point being that this particular man is easy to throw rotten fruit at, but the level of outrage doesn’t necessarily reflect how much people reject his general point of view. Some people think some scary, repugnant shit that they rarely say out loud.

Hospital Memories

The last time I had surgery directly related to my disability was in early January, 1977. I’m pretty sure this is correct, because I distinctly remember watching Jimmy Carter’s Inauguration on a little black & white TV on a wall bracket in a room at the Montreal Children’s Hospital.

I had all of my disability-related surgeries at the Montreal Children’s Hospital. I don’t know if that’s because it’s where all complicated pediatric cases in Plattsburgh, New York were sent at that time, or because my father had done some of his pediatric internships there. Nowadays, people from our area go to Fletcher Allen Healthcare in Burlington, VT, or the Dartmouth-Hitchcock Medical Center in New Hampshire if they need specialist stuff, but back then, I think Montreal was the place.

I don’t know exactly how many surgeries I had there. When I was around 8 or 9 years old, I remember finding out that I’d had like 10 surgeries to that point, several of them when I was an infant or toddler. So I’ll take a guess that the total might be 11 or 12. Strange as it may seem, I don’t think I have a definitive record of my early medical history. I think for fun I’ll get in touch with the Montreal Children’s Hospital to see if they can send me any old records they might still have. I’m also kind of curious to visit the place again, sometime before they finish the new building in 2015.

Some things I remember about MCH and my experiences there:

- By far the best thing about my yearly checkups at MCH was that we would get lunch at McDonalds afterwards … something that just never happened with my parents back home.

- The dominant smell of the place was chicken soup.

- The night before my last procedure there … extensive spinal surgery … they prepped me at 5 AM. This meant that they washed and shaved by back and covered it with a sterile sheet. And there I lay in a kind of drafty, chilly hospital room. My father came in and saw this, got pissed off, and covered me with a blanket. This caused a minor uproar because it meant they had to wash my back all over again.

- That surgery was the first time I got a taste of addiction. I hated, hated needles at that age, but after a few days I got to where I literally counted the minutes until I could have another shot of whatever powerful pain medication they were giving me. I assume they did everything right because I never got truly addicted in a harmful way, but I do remember a distinct cycle of pain followed by relief that seemed to have more to it than the actual pains in my back.

- A woman who went to our church at that time recorded herself on cassette tapes reading “The Lion, The Witch, And The Wardrobe” for me to listen to while I was in the hospital. I still reread the Chronicles of Narnia every few years.

- While I was in surgery, my parents made friends with a woman who was waiting for her daughter who was also in surgery. They had come all the way from Jamaica for the operation. I remember the mother visiting my parents and me in my room, and I think maybe Mom and Dad went to see her and her daughter in her room, too.

- My mother stayed in Montreal most of the time I was in the hospital, at the apartment of a very good friend of my parents. The place was just a few blocks away from the hospital, so Mom would walk back and forth. I remember her telling me about walking back to the apartment through a blizzard, saying that it was both scary and beautiful at the same time. Snowstorms in Montreal are like that.

I can't say I have happy memories of MCH itself, but I have some happy memories indirectly related to it, connected with that time of my life and the people around me then.

• Wikipedia: Montreal Children’s Hospital

"Inspirational" PSA

I like this PSA a lot.


Hosted by OlliBean.com, via a Tweet from @emily_ladau.

Photo Of The Day

From the Hold on a sex Tumblr blog.

How To Tell If It's An Institution

Some signs that a place might be an institution

Social skills for autonomous people Tumblr blog

The first thing I thought of when I read this post was a speech I heard at an Independent Living Center conference, I don’t know how many years ago. The speaker was talking about how institutional care facilities for the elderly and for people with cognitive impairments were becoming more sophisticated in how they marketed themselves. They had caught on to the fact that people no longer just accept nursing homes and large residential facilities, and are looking for care solutions that feel more “home-like”.

As a result, the lines between true Independent Living and “prettied up" institutional care were being blurred. They still are. And many people with disabilities in need of daily assistance are genuinely confused about what is “independent” and what is “institutional”. The speaker ended her talk with a bullet-point list of questions a person might ask themselves to realize whether or not they are living independently. I don’t remember all or even most of the list, but here are a few I do recall:

"Do you own the utensils you eat with?"
"Do people have to knock and wait for you to answer before coming into your room?"
"Do you have a lock on your residence with a key that you hold and control?"
"Do you choose the people you live with, or whether or not to live with anyone at all?"
"Do you decide what and when to eat?"
"Do you own the sheets and pillows on your bed?"

When I heard these questions, it felt like a bubble popped in my head. All of a sudden I realized that independent living wasn’t about the number of roommates you have, whether you rent or own, or even whether you live on your own or with your parents. It isn’t about doing what you want or some concept of “control”. It’s about ownership, privacy, and personal boundaries. It’s more about “how” and “who" than it is about where. You can't fake these things with extra potted plants or ice cream on Sundays.

If you’ve never even come close to needing extensive daily care, you may not understand how important this is. If you have spent time in an institution, or have come close, I hope this rings true to you.

Photo Of The Day

From the Disability Curious Tumblr blog.

CRPD Hearing Today ... Act Now

This is a call-in week for the UN Convention on the Rights of Persons with Disabilities, (CRPD), which will once again be discussed in a Senate Foreign Relations Committee hearing tomorrow, November 6. I pretty much said my piece about the CRPD last week, so this week I’ll just post a few more links about the fight for Senate ratification and the opposition to it:

Opinion: Menendez and McCain: Ratify disabilities treaty

Sen. Robert Menendez and Sen. John McCain, USA Today - November 4, 2013.

"This treaty is consistent with our nation's interests and values. The Senate should ratify it this year."

Right-Wing Groups Gear Up To Oppose Disability Rights Treaty, Again

People for the American Way - November 4, 2013

"While right-wing groups circulate irresponsible rumors about imaginary impacts of the CRPD, international disability rights advocates are left without an important tool for their work – the United States’ approval of international standards based on US law. The Senate now has a second chance to listen to common-sense voices of support for the treaty – including leading disability rights, civil rights and business groups – and reject the unhinged rhetoric that brought down the treaty last year."

Today, First of Two Hearings on Disability Treaty Convenes
Andrea Shettle's Tumblr - November 5, 2013

"The disability treaty issue is not just an important issue about disability rights. It is also a major test for the Senate to see if they can bridge their political differences and work together on a common cause. Disability rights has traditionally been an issue that legislators of all parties can get behind. We have to remind them that they cannot stop now."

Convention on the Rights of Persons with Disabilities - Action Center

Sign a petition, write, email, call, and Tweet Senators on the Foreign Relations Committee.

If you really want to dig into the details and find out why ratifying this convention is both worthy and essential, watch this video:

Photo Of The Day

From the DISABILITÀ - TOE MOUSE Tumblr blog. I don’t need one, but I want one!

Disability News

I set my Google News page to find disability-related stories using keywords, "disabled" and "disability", and I pick a few that interest me ...

New Transportation Department rules seek to make flying easier for disabled passengers

Joan Loway, Associated Press - November 4, 2013

I’d like to know more about the change allowing up to two wheelchairs to be transported within the passenger cabin. That could make a real difference, allowing more wheelchair users to keep their wheelchairs close, and not have to wait for baggage handlers to deliver them.

Disabled Baltimore Woman Mauled To Death By Own Dog

Rochelle Rictchie, CBS Baltimore WJZ - November 3, 2013

It’s a terrible thing to happen to someone, of course. But I can’t help also worrying about what people might do with a happening like this. The idea that people with disabilities are terribly vulnerable and in need of special supervision lies pretty close to the surface of most peoples’ minds, and random mishaps are easily spun into overblown “problems” in need of restrictive “solutions”. On the other hand, I am one of those people who says, "Why a Pit Bull?"

Disability Studies: A New Normal

Cecilia Capuzzi Simon, New York Times - November 1, 2013

It’s nice to see an article on Disability Studies programs, but this left me underwhelmed. I don’t know whether the reporter only half understood what Disability Studies are about, or if Disability Studies programs actually are a bit stale and superficial these days. It just seemed like the concepts mentioned in the article are the same that I heard in the early ‘90s, and are probably covered in the first week of Disability Studies 101 classes.

Followup: The Sick Children Meme

I think I’ve found the answer to my question from yesterday ...

“Desperation Porn”.

Kara Ayers describes exactly what I was thinking about, and astutely positions "Desperation Porn" as a polar opposite to "Inspiration Porn", confirming my vague feeling that the two kinds of Internet photo trends are linked.

Images of disability sure are loaded. I'm starting to understand why modern day Muslims and some Chrisitans through history rejected images of God. No matter how you depict something so inherently emotional and packed with meaning, you're going to piss someone off.

I'm gonna keep posting photos, though.

Photo Of The Day

From the Disability Curious Tumblr blog.

Quote

“There is a huge difference between, ‘Be empathetic, care about other people, think of somebody other than yourself,’ and ‘No matter how badly you’re being treated it’s wrong to be angry’ … It’s good to be the bigger person, but you're not obligated to not be angry."

— Linda Holmes, “Pop Culture Happy Hour”

The Sick Children Meme

Is there a name for that thing where people blog photos of gravely sick children or teens and ask for donations, “Likes”, prayers, etc.? I see it a lot, especially in the Facebook news feeds of particular people I’m connected with, but also on Tumblr blogs. I am instinctively repulsed by the phenomenon, (though let me be clear not by the images themselves), and associate it in my brain with ableism and “inspiration porn” in relation to disabled people. But, then I wonder if it really is in the same category, since what I’m looking at is people who are acutely ill, not disabled. What’s the deal here? Are there darker, weirder psychologies behind this trend, or is it just about simple compassion and I should lighten up?