About Sarah

Due to a stroke, I've walked with a cane since I was 22 (I'm 36 now)...but I'm so much more than just the girl with the cane.

Author Archive | Sarah

Rand Paul Doesn’t Belong Anywhere Near the White House

rand paulWell, Election 2016 is officially underway, with Ted Cruz and Rand Paul the first two to officially declare their candidacy.

(ETA: I see now that Hilary Clinton threw her hat in the ring yesterday and that Marco Rubio is supposed to today.)

For readers that have joined this blog since the last US Election, be warned: I talk about US Elections, even though I’m Canadian citizen. I talked about Election 2012 far too much. But I was genuinely curious about how it was going to shake out for disabled people in America. Most candidates dropped some general hints in their comments about their plans to bolster (or not bolster, as the case may be) the social security net, but few addressed the disability issue directly, or took the time to address a group large group of disabled people that invited the candidates to speak to them.

I already feel confident in making some predictions about Rand Paul based on past record.  He voted “No” on the ratification of the CRPD (as did Rubio, for what it’s worth) and several months ago made some off-the cuff but inaccurate comments about SSDI and fraud:

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting a disability check. Over half of the people on disability are either anxious or their back hurts — join the club. Who doesn’t get a little anxious for work and their back hurts?  Everybody over 40 has a back pain. And I am not saying that there are not legitimately people who are disabled.  But the people who are the malingerers are the ones taking the money away from the people who are paraplegic, quadriplegic. You know, we all know people who are horrifically disabled and can’t work, but if you have able bodied people taking the money, then there is not enough money for the people who are truly disabled.”

After taking some time to actually learn some statistics about disability in America, Rand Paul discovered that people get disability checks for more types of disabilities than backaches and anxiety…that the people who have these disabilities don’t make up over half the people that collect disability checks, and that the fraud rate for SSDI is actually relatively low. He tried to walk the statement back, but obviously I remember it – chances are others do as well. Besides, his Libertarian “If you haven’t prepared then I shouldn’t have to help you” leanings aren’t going to make him very sympathetic to the needs of disabled people, I’d imagine, or to those of families who have disabled children that may require costly supports and services.

But I’m actually here today to comment on another story regarding Rand Paul. It’s not disability-related, so I ask for your indulgence as I meander a bit.

I came across a video on my Facebook timeline, entitled “Rand Paul Releases Sexist Condescension on Two Women Journalists”

“Interesting,” I thought, letting the video run.

I ended up watching it several times, because I couldn’t believe what I was seeing:

Rand Paul Needs to Learn to Play Nicely with the Ladies

Now, I acknowledge that NBC’s Savannah Guthrie took a bit of time getting to her actual question, but someone needs to explain to Rand Paul that even when he feels like a like a lady journalist has smacked his ego and left a boo-boo, mansplaining proper interviewing technique to her makes him come across like a little boy throwing a tantrum because a girl bested him at the spelling bee. He’s playing in the big leagues now, where other candidates smile and move on when a journalist’s line of questioning annoys them.

He’s going to have to suck it up.

*I* can be annoyed, though, and I was. I was annoyed on Savannah Guthrie’s behalf, that he spoke to her the way he did and that because of her position, she couldn’t really say anything back to him.  I think that she was annoyed, too.

And then I saw him “shush” the second reporter, CNBC’s Kelly Evans, and my eyes narrowed, and I moved from annoyed to downright angry.

My mother was not a woman who would be “shushed” and she didn’t raise my sister and I to be “shushed”. I like to think that I could have kept it polite in that reporter’s circumstances, but I can guarantee that I would have said, “Please don’t “shush” me.”

“Shushing” anyone is rude, and disrespectful, and not what I’d expect from a man who wants to be President. He’s quite rude over the course of this whole interview, in fact, especially towards the end:

He joked about this later to a male reporter who asked about vaccines: “You don’t want to be shushed, do you?”

But I don’t think that Rand Paul would “shush” a man. I think he sees men as colleagues and women as little girls, ultimately to be tolerated, but chastised when they misbehave.

Rand Paul Didn’t “Shush” Megyn Kelly

A bunch of people have called Rand Paul on this behaviour, including Fox’s Megyn Kelly. I have a love-hate relationship with Megyn. Sometimes she’s right on. Sometimes she’s ridiculous. A Jezebel reader caught it nicely, I think, when she said that Megyn Kelly is very good at speaking about issues that affect her – well-off, white, non-disabled (my addition) women. But on these issues she’s quite vocal and can be quite compelling, and her take-down of Rand Paul during an interview with him for how he treated Guthrie and Evans was fairly gutsy – gutsy enough that he didn’t try to speak over her, although you can see he wants to.

She held his feet to the fire, and I think she caught him off-guard. Who’d have guessed that female journalists won’t always defer to you, huh, Rand Paul?

But I was waiting for him to try and talk over her. I was watching him, seething, forgetting all the times that I’ve disagreed with Megyn Kelly, seeing her the way I see my sister, my friends, my colleagues, the women I’ve supported over the years, and thinking:

“Don’t you fucking dare shush her.”

I don’t want Rand Paul in the White House (not just for the reasons I’ve talked about, but this is getting long.) I’ll try not to write too much about Election 2016…but plan on hearing that again.

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My AVM Story: Working “Out There”, Working on Balance

my avm storyIt took a couple of years after my brain surgery and stroke, but eventually I was well enough to work.

It’s always been part-time. Work in the educational and developmental services sector is always part-time and contract when you’re just breaking into it these days, and in the area in which I live, work in general is usually part-time and/or seasonal. Most people work a couple of jobs to make ends meet.

Until recently, it’s been rare for me to find more than one job at a time that I can actually do, given my disabilities and the restrictions that they impose on me, although with freelancing there have certainly been times where I’ve worked the equivalent of full-time. But a writing job in my apartment and a desk job “out there” don’t necessarily require the same amount of energy from me, as I’ve recently discovered.

Since September, I’ve been working at a local computer centre, created especially for people who want to do online learning. It’s part of a government program, and a good one. There’s a small fine arts community college in my community, but anyone who’s wanted to pursue post-secondary education in just about anything else has had to take the big, expensive step of moving to a larger centre and attending school there, or commuting at least 2.5 hours round trip per day. With the increasing number of programs offered totally or almost totally online at Canadian universities and community colleges, the Contact North program allows people in rural communities like mine to get assistance choosing a program, get signed up, and to have a place with fast internet access to do their work if they need it.

Most weeks it’s not a whole lot of hours. But some weeks it has has been. And recently there’s been the welcome addition of a writing/research job with a small media production company in my town, for two or three days a week. I some of that work from home, but I like going into the office at least one day a week. My last two jobs haven’t been office jobs. I miss that environment.

I come home at night and catch up on with my freelancing, and often fall asleep at the computer as I’m working. I do a lot of catch-up on weekends.

I hear people who have had strokes talk about how they’re much more tired than they were before, and I remember when that was really the case for me. But now I tend to think, “That’s not me anymore” and I push myself pretty hard sometimes when, really, I don’t know how much of my brain is still damaged, and to what extent, and how it affects me.

I can see the effects of some of it, of course. But I don’t know if even my doctors can say for sure  what all of the effects of the stroke were.

Everyone has to find a way to balance work and other aspects of life, and to figure out how to stay healthy and to schedule time for everything that they want and need to do. I’m grateful to be able to work and to have a lot of work right now, but I’m sorry that it’s not leaving me a lot of time and energy to write. I’m working on that. I’d like to be here more.

I’ve never been very good at the life balance thing. I’m trying to learn!

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Bishop Kevin Doran Knows that Down Syndrome isn’t “What God Intended”

kevin doranI put this article up about Irish Catholic Bishop Kevin Doran on the Facebook page yesterday, and it’s getting a lot of attention – enough that I thought it deserved some more.

Kevin Doran is getting attention from the disability community because of remarks he made during an interview about Ireland’s upcoming referendum on gay marriage. There’s an interview with Kevin Doran, rather hard-hitting, at the bottom of the article, which is quite interesting if you get the time, because it really shows how muddled and not-completely-formed the theology of at least Kevin Doran’s school of Catholicism is on this issue.

(Full disclosure: I don’t pretend to know what Kevin Doran’s particular school is, as I don’t know a whole about the Catholic Church, but I do know my Bible and I do have at least a working knowledge of and grudging respect for theology.)

I’ve heard his sorts of arguments before, and they made me sigh. But let’s get to what really brings me here today.

Kevin Doran’s Thoughts on Disability

I don’t think that Kevin Doran saw himself as being offensive when he said, in response to the question of whether homosexuality was something God intended, that “That would be to suggest that if some people who are born with Down Syndrome or Spina Bifida, that that was what God intended either.”

But it was very offensive nonetheless. And extremely problematic, because Bishops have authority within the Catholic Church. People believe that what they say is right. If the Bishop says that people with Down Syndrome or Spina Bifida weren’t what God intended, there are going to be people are that take that seriously, and that attitude is going to inform their actions.

Disabled people aren’t fighting enough harmful rhetoric as it is (and in the UK in particular, where the government-generated and media-driven “scrounger” continues to fuel catastrophic cuts to benefits and services?)

I know a number of intellectually disabled people who attend church every Sunday, who take great comfort from it, and great pleasure from being part of a church community. They are welcomed as any non-disabled member would be. That a Bishop not only believes in his heart that disability and the diversity and opportunities for learning (for everyone) that come along with it are not what God intended, but would publicly state it and use it as justification to deprive another group of rights that others enjoy is despicable to me.

But then again, Kevin Doran did seem to be out to out to offend just about everyone that he could with this interview, including gay and lesbian parents, and women who have been raped that are considering abortion. Perhaps he thought he should fit disabled people in there somehow as well.

Won’t you join me as I roll my eyes?

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Why I’m Sad that Jon Stewart is Leaving “The Daily Show”

jon stewart

By Martin Monroe (http://flickr.com/photos/willismonroe/73332530/) [CC BY-SA 2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

Jon Stewart in a disability advocacy blog?

Yes. And not just because he did a story about how silly it was that the Convention for the Rights of Persons with Disabilities wasn’t ratified in the US the first time around (“It’s official: Republicans hate the United Nations more than they like helping people in wheelchairs.”)  I remember it well, because I posted on my Facebook page: “Jon Stewart is doing a disability advocacy story. This man is awesome.” (The actual clip is here, but people outside the US may not be able to watch it. Sorry…clips from Comedy Network shows that everyone can see are hard to find these days.)

I’d already declared my admiration for Jon Stewart several times on Facebook, usually out of the blue and for no particular reason, so my friends weren’t really surprised. But even I’d been a bit surprised that an issue that got next to no coverage in the mainstream media had merited a coveted spot in Jon Stewart’s show, and I really was grateful to him.

After his announcement last Tuesday night that later on this year he’ll be handing over the reins to someone else, I found myself much sadder about it than I felt like I should have been. Until I read a Facebook comment on one of the many, many articles that I read later in the week about his impending departure that said (paraphrasing) that this was the only time that the writer had heard about a TV personality leaving a show where he’d walked around feeling sad for the entire next day. And I realized that it’s not just me that’s already dreading the day that Jon Stewart leaves The Daily Show.

Discovering Jon Stewart

I started watching The Daily Show when I moved out on my own after my stroke, in 2004. I’d just missed George Bush being elected by a couple of months. Between watching Jon Stewart and Stephen Colbert, just in his sophomore year of his own show, a passing interest in American politics became a mild obsession. As the 2008 Election approached, I was dumbfounded. I’d never paid attention to this process before. For someone who was used to federal elections taking six weeks, from announcement to close of polls, it astonished me, and, frankly, sometimes disgusted me. I saw those emotions mirrored back at me every night from Jon Stewart behind his desk at The Daily Show.

Before I knew it, we were doing it again for 2012, and this time I felt knowledgeable enough (and passionate enough) to write about here. The Daily Show was no longer my only source of American news. I watched CNN in the mornings, commiserating with people over Twitter about how terrible…how absolutely terrible…the morning show format was. Unable to get MSNBC or Fox with my cable package, I listened carefully to what people said about them, watched clips, talked to people, formed opinions. I started to realize that I already knew about events that Jon Stewart talked about on the show, feeling a bit guilty that between my consumption of British news to keep up with what was going on with welfare benefit reform, and of American news simply because I was fascinated by it, I knew more more about what was going on in two other countries than I did my own. I try to balance that out now by catching the Canadian news at 6 pm.

What Jon Stewart and “The Daily Show” Mean to Me

Rolling Stone Magazine put Jon Stewart’s power over bleeding heart liberals like me nicely in this article:

“…his famous request to Tucker Carlson and Paul Begala of Crossfire — “Stop hurting America” — was a not-so-quiet refrain under everything the host did.”

That “Crossfire” appearance is widely credited to be one of Jon Stewart’s finest moments on television (and the moment that caused the cancellation of the show several months later).  Paul Begala had this to say about it when he heard about Jon Stewart’s announcement last Tuesday.

Watch the “Crossfire” interview in question (where Jon Stewart does indeed call Tucker Carlson, now on Fox, a “dick”…I hadn’t caught that until I read Paul Begala’s comments):

But the real reason I’ll miss Jon Stewart? I’m a TV person, as much as I don’t want to be. I live alone. I keep the TV on for noise when I’m doing other things, and when I’m feeling sad/lonely/overwhelmed/anxious, I watch for distraction. Once I moved out on my own, I wasn’t sure I’d ever find a job, but I did. I was a supply Educational Assistant – I was told that because of my disabilities, I wouldn’t be called very often. I got another job. I spent 5 years helping some very brave disabled young people and their families some hard battles that took a lot out of all of us, lost the job because there wasn’t any other work that I could do in the company with my disabilities when my position was cut, and couldn’t find another job for over a year. The sitcoms to which I went for laughs and distraction came and went.

But most weren’t very funny. Jon Stewart and The Daily Show consistently g0t a laugh – sometimes the first laugh in an otherwise dismal day – from me. When the day’s been long and you’re wondering how you’re going to get through the next one, that’s a lot, right there. Jon Stewart gave me a laugh, spoke right to my despairing liberal heart, and made me feel like, somehow, it was going to be okay.

I’ll miss that.

But I understand that no one can do the same job forever.

So, best of luck, Jon Stewart. And thank you to readers for letting me meander a bit…

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Revisiting The Measles Vaccine Debate, in Light of Disneyland

measles vaccineApparently I need to blog about this measles vaccine business again.

It’s over a year since I talked about this, when there were small outbreaks in Canada and the US. The CDC reported 102 cases of measles at the end of January, most stemming from an outbreak at Disneyland in December.

No, it’s not a national emergency, although measles is “one of the leading cause of death in young children globally” (Read more here). The chances of a healthy person dying of measles in the US are fairly slim, as the majority of severe complications and deaths due to complications occur in developing countries with weak health infrastructure and children who are chronically malnourished. (Read more here). However, the chances are still a little too high for my liking: 1 or 2 infected children in 1000 will die, and up to 1 in 20 will experience measles-related complications. I know that a lot of people aren’t with me on this, but I consider measles a serious disease. Read more here.

I’m fully aware that many, many Americans got measles before the vaccine was routinely administered, as the disease is extremely contagious,  and survived it with minimal discomfort and downtime. Measles just used to be a part of life.

But it hasn’t been for a long time. The measles vaccine almost eradicated a disease that, for some that come in contact with it, is very dangerous. It can cause ear and chest infections, brain damage, deafness, blindness, pneumonia, and  encephalitis. Author Roald Dahl wrote about how his daughter Olivia died of measles encephalitis:

“Then one morning, when she was well on the road to recovery, I was sitting on her bed showing her how to fashion little animals out of coloured pipe-cleaners, and when it came to her turn to make one herself, I noticed that her fingers and her mind were not working together and she couldn’t do anything. ‘Are you feeling all right?’ I asked her. ‘I feel all sleepy,’ she said. In an hour, she was unconscious. In twelve hours she was dead.”

I know a mother whose son can’t have the measles vaccine because of a rare blood disorder, and she explained to me very carefully about how while the lack of a measles vaccine is always a concern, herd immunity protects people like her son. However, as fewer people vaccinate, herd immunity weakens, and puts even vaccinated people at risk, as the measles vaccination is only 95% effective.

Here’s a video about herd immunity, featuring some Gummi Bears…

Herd immunity is important, And this is why, blogging about the measles vaccine this time, I’m calling the crowd out that refuses to give it to their children.

The Decision Not to Give the Measles Vaccine Doesn’t Just Affect That Child

If a parent’s decision not to give a child the measles vaccine affected only that child, I’d be truly more than happy to let parents decide what they want. But that’s not the reality. A child who hasn’t had the measles vaccination is potentially dangerous to infants, the immunosuppressed, and other people who can’t have the measles vaccine for good reasons, including people undergoing cancer treatment…people who didn’t ask to be affected by the actions of those who refuse to to give their children the measles vaccine, and shouldn’t have to be. For people who refuse to vaccinate to insist that their right to go against the dictates of public health policy based on solid science should trump the rights of everyone else to to be in an environment that’s free of the potential to catch a disease with potentially serious health consequences is just selfish.

Yes, you parents who aren’t vaccinating your children against measles. You’re selfish. And if no one’s told you that yet, it’s about time that you heard it.

“But Autism”

I’ve read the reasons why parents aren’t choosing to get their children the measles vaccination. I’ve yet to hear a substantially-supported argument in favour of refusing to vaccinate, and this includes “Big pharma” and “toxins” and especially the “But autism” thing. In fact,  I’m flabbergasted at how often I’m hearing about people still refusing to vaccinate against measles because of the fear of their child getting autism.

In recent discussions on this, I’ve challenged on this ableist, “but autism” angle whenever I can, pointing out (as I did in my last blog post on this topic) that the studies that “linked” autism and vaccines were thoroughly debunked. I’ve pointed out that several times this week in discussions that making autism a “boogeyman” is a tactic of so-called “advocacy groups” with questionable ethics, such as “Autism Speaks”, and that many people autistic people would tell you that they’re perfectly fine with being autistic – it’s society that has the problem.

A friend did on Twitter said the other day, “As an autistic, the fact that so many people would rather have a child that’s dead than autistic child scares the shit out me.”

“Fucking Furious”

I didn’t realize until I read that, and started typing in response, “It makes me fucking furious, which is why I’m never going to stop fighting against this ableist ‘I’d vacccinate, but autism’ bullshit,” how angry about all this I really am (and I’m not autistic, so I can only imagine how autistic people must feel). Even if there was a remote chance that the measles vaccine could cause autism (which there isn’t), I’d rather take that remote chance, vaccinate, and know  that there was a 95% chance that my child would avoid the terribly contagious measles and anything more more serious that it might turn into.  I’m not a parent, but if I was, in this hypothetical world where vaccines once in a blue moon caused autism, I would without hesitation choose to do everything that I could to ensure my child stayed warm and alive in my arms, including vaccinate, rather than, God forbid, end up one of the few with a body that just cannot take the strain of fighting measles.

The Measles Vaccine – The Bottom Line

Forgive me if I cannot understand why a fear of autism prevents parents from giving children the measles vaccine, especially since it’s been proven that the two. Aren’t. Linked. Any children that I have will get the measles vaccine, to protect them and to protect others.

It’s as simple as that.

I’m sorry that I can’t be as diplomatic as I was last time. Discussions this past week have shown me that subtlety doesn’t get the point across with this particular issue.

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Ableist Attitudes About People Who Use Wheelchairs

ableist attitudeFor some reason, I’ve seen ableist attitudes about people who use wheelchairs come up a lot in my social media feeds recently, and this article about a robbery in the British town of Coventry brought them all together.

I guess The Mirror figured that the thieves in question resembled two characters from the British comedy sketch show “Little Britain”, one of which uses a wheelchair. I’ve heard of “Little Britain”, but I’ve never seen it, and I’m not familiar with any of the characters.

Whether the thieves in question actually intended to resemble “Little Britain” characters or not seems unclear from the article, but it’s not really important for the purposes of this piece anyway. The point that I want to make is that this article clearly shows two very problematic and ableist attitudes about people that use wheelchairs that, despite efforts to educate the public that they’re inaccurate, are still just far too commonly held.

Ableist Attitude #1: No One Who Uses a Wheelchair Can Stand

Obviously this particular writer for The Mirror wasn’t familiar with the uproar a few months ago when George Takei posted an ableist meme to his Facebook page, because I was far from the only blogger to write about the fact that a person that uses a wheelchair suddenly standing up is probably not:

  1. Experiencing a miraculous healing or
  2. Faking a disability.

Plenty of people who can stand and walk use wheelchairs. I was standing up from my wheelchair not even a couple of weeks into stroke rehabilitation. I walked short distances with my cane but used a wheelchair for long distances for about a year after I left stroke rehabilitation. The whole “Only paraplegics use wheelchairs and people who walk don’t use wheelchairs” is another one of those binary ways of viewing disability that ultimately holds disabled people back and keeps society from fully appreciating the ways that we can facilitate true inclusion.

Not to mention, it helps people to justify dangerous, deeply ableist attitudes. If your reaction to seeing someone in a wheelchair stand up is that they’re faking a disability, and you already share the general opinions of say, Rand Paul or Conservative politicians in England that there are are a whole bunch of people who receive disability benefits that don’t actually need them them…well, it doesn’t help our case when budget time comes around. And disabled people in Britain can’t afford to lose more than they already have to the “scrounger” narrative – the austerity measures that have come as a result of it have caused far too many deaths already.

Ableist Attitude #2: People Who Use Wheelchairs are “Wheelchair-Bound” or “Confined to a Wheelchair”

People who’ve looked at the Facebook page since Sunday saw something I posted that talked about this.

Wheelchairs don’t confine disabled people. They actually free those of us who use them. Like I said, I used a wheelchair for a year after my stroke when walking long distances was just too exhausting. In that year I was was still very unstable – much too unstable to go out in with my cane in the winter for even short walks unattended. I was pretty much housebound, except for the times that my father drove me places. But because I had my chair for long distances, I was able to go out of town every now and then and go shopping, go to a movie, have dinner in a restaurant…I was able to go to the Toronto Zoo with my family…I spent a great day touring Kingston (where I used to go university) with my sister and her friends…there were even plans to go to Canada’s Wonderland, a large theme park about two hours away. I never got to go, but my wheelchair would have made it possible for me to do so.

Wheelchairs make it possible for disabled people to work, volunteer, travel, play sports, dance, and do all manner of daredevil moves that I wouldn’t have dreamed of trying as as non-disabled person, let alone a wheelchair user. Here are some videos:

Wheelchair dancing

Wheelchair tennis

And this one…as Dave Hingsburger said about this video:

“Next time a reporter writes that someone is ‘confined to a wheelchair’ I want them to be duct taped to a chair and made to watch this. Maybe they will understand what ‘confined’ means when they are ‘confined’ and see the liberation that chairs offer.”

Editor of The Mirror, Meet Me at Camera Three

Let’s talk about wheelchairs and ableist attitudes: ‘Little Britain’ Thieves Hunted After Wheelchair-Bound Woman STANDS UP To Steal Food’

Really?

“…the apparently-disabled woman leaps up and steals packaged meat.”

Seriously?

“The charlatan stands up!”

I object to this both as a disability advocate and a writer.

The Mirror is a newspaper, and you should know better. If anything confines disabled people, it’s lack of accessibility and the attitudinal barriers perpetuated by articles like this one.

Your readers, disabled and non-disabled, deserve better.

 

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What is Senate Bill 334 Really About and Is It what the Disabled Community Needs?

senate bill 334It’s been awhile since I’ve talked about abortion on this blog.

Several people have covered this story recently much better than I will, but I really want to talk about Senate Bill 334, filed by Indiana Republican Senator Travis Holdman. Senate Bill 334 would make it illegal for medical providers to perform abortions based on disability or gender.

I realize that Senate Bill  334 sounds like a bill that, as a disability advocate, I should support. As I’ve said before, even though I’m pro-choice, I don’t like that it’s a reality that women get abortions because of a disability in a fetus, or the high risk of it acquiring a disability. It makes me feel sad. However, I do understand that there are reasons why it happens, ranging from pressure from the medical community to abort to parental concerns about being able to handle the needs of a disabled child, to general concerns from all involved about the child’s potential quality of life.

And, as Meriah Nicholls said in her essay “How to Save a Disabled Baby“, written last week, “Our country is not kind to people with disabilities”:

“What mother, not knowing about or having access to communities of proud, educated, successful people with disabilities, would want her child to be subjected to what most people with disabilities in the United States are?”

Yes, I understand why these abortions happen.

Although, quite frankly, who cares if I understand? The decision is not mine.

That’s what it ultimately boils down to for me. I don’t feel that I can say to women, “You have the right to choose, except in this one circumstance,” no matter how sad I feel about the reason she feels to end a pregnancy.

So I can’t support Senate Bill 334. I don’t even trust the motives behind Senate Bill 334, actually.

I Don’t Think Senate Bill 334 Is What It Seems

David Perry suggests in “Anti-Choice Activists Try to Drive Wedge Between Reproductive, Disability Rights Activists” that the strategy behind Senate Bill 334 is to “divide and conquer” disability activists and reproductive rights activists, and I think he’s right. That sort of strategy is insidious, and makes me even more determined to insist that women have the right to choose, period. Perry says:

“We fight back with accurate information and coalition building. We say: A woman’s right to choose is inviolate. Then we say: But before that choice, let’s make sure that it’s based on reality, not fear-mongering or misinformation.”

Perry is talking about the medical community and its tendency to give outdated and often inaccurate information to mothers who are a carrying a disabled fetus, and how Louisiana has legislated that abortion can’t be presented as an option in those cases (although it certainly is in other states).

He makes a vital point. Women need the correct information about a diagnosed disability in a fetus in order to make the best personal decision, as well as the correct information about potential options. Anything else is infantilizing, in that there’s an assumption that women won’t be able to make a good decision when people are honest with them and provide them with the best available information, and profoundly disrespectful to both women and to disabled people – after all, this will just be a disabled baby, why bother to give the mother accurate facts, or to even learn the accurate facts to give?

“Our country is not good to people with disabilities,” Meriah Nicholls writes. We need to pay attention to this, folks. If doctors are lying about us before we’re even born, or can’t be bothered to learn enough about us to ensure that they’re giving the people who will parent us the right facts, then there’s a big problem with how this country sees us.

Senate Bill 334 – Deja Vu All Over Again

I remember writing a similar post to this in 2013, when North Dakota tried to pass the same legislation. (I thought it had passed; thank God it didn’t). If the government really wanted women to stop aborting disabled fetuses, it would make it easier for parents to raise disabled children. From that 2013 blog post:

“I submit that the lawmakers that put this new abortion law in North Dakota together that if they  were truly concerned about lowering the number of fetuses that are disabled or that may become disabled because of a congenital condition, they’d concentrate on making these social reforms rather than making an abortion law about fetuses with disabilities:

1. Make adequate funding for respite, personal development, special diet and equipment, early intervention programs, and a case coordination worker available to families of disabled children from the toddler years until adult services kick in.

2. Recognize that because of expenses associated with raising a disabled child, a family that might be “well off” otherwise may need to rely on safety net services such as food stamps and Medicare.

3. Develop ways for parents and caregivers to connect and support each other, to further their education about caregiving issues, and to quickly access appropriate supports in a crisis.

4. Ensure that schools are properly following the IPRC process for disabled students, including the piece about transition planning for when a student moves from elementary to junior high, junior high to high school, and high school to post-secondary school or the job market.

5. Explore options for community-based residential placements (and not just group homes). Give disabled people a fighting chance to be community members. Develop ways to monitor the safety of of these placements on a regular basis and to provide a timely and thorough response to reports of violations.

6. Work to identify and eliminate ablism within government systems and start discussing how government can help the private sector with the same process.

7. Start acknowledging that the unemployment rate for disabled people in the US is much higher than for non-disabled people, and plan how to address it.

If I saw even one of those those things moved up on the priority list along with this new abortion law in North Dakota, I might believe that this is really about protecting the lives of disabled people.”

I simply don’t trust that GOP-sponsored abortion legislation regarding disabled fetuses is really about saving the lives of disabled children. For a party that keeps talking about how it wants  less government intervention in peoples’ lives and objects so vehemently to the government being involved in health care, this doesn’t seem a logical way for it to ensure that as many disabled fetuses as possible as carried to term – but for a party that has consistently displayed a vested interest in eroding a woman’s right to choose wherever it can, it makes perfect sense.

And it makes me frightened for my friends in America.

Oh, if you look at Senate Bill 334, you’ll see that it’s also trying to stop abortions being performed on the basis of gender. This is a concern too, of course – except that I’d rather find out how many of these actually happen in America before commenting on it.  Recent data indicate that 75% of mothers who receive a prenatal diagnosis of Down Syndrome terminate the pregnancy – obviously that sort of thing isn’t happening on the gender front in America. In fact, Perry suggests that the sex-selection portion of Senate Bill 334 is a “smokescreen“.

I don’t like any of this.

What do you think?

 

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Hayley Bicker Spends “100 Hours in a Box” for Autism

hayley bickerDisability simulations leave me (and many other disabled people) cold. So I wasn’t really impressed by Haley Bicker’s “100 Hours in a Box” to raise autism awareness just on principle.

It’s not that, as Andrew Pulrang wrote recently, the people who use disability simulations to raise awareness aren’t (usually) well-intentioned. It’s that, as Emily Ladau wrote, they’re not really effective, they don’t have a whole lot of logic behind them, and they’re kind of insulting to disabled people anyway (read her wonderful essay here).

I’ve always seen participating in disability simulations as something akin to the mandatory 40 hours or volunteer service that the Ontario government makes students do while they’re in high school. It’s a well-intentioned policy, it’s certainly not a bad thing to make students do, and hopefully they get something out of it. But even if a student does all 40 hours in one year with an agency – by the end of 40 hours, they’re probably just only getting a sense of how things work and what they’d really like to do. It’s not a lot of time in which to get involved with anything in-depth. The same way, when someone sits, say, wheels themselves around in a wheelchair for a day, or has someone else wheel them around, how much can they really learn about the experience of having to use a wheelchair? To be honest, I don’t know whether you could fully appreciate what even the experience of living one-handed is like after just a day of it (unless you were willing to let me make you try a LOT of stuff).

But that’s not even why Hayley Bicker’s “100 hours in a box” rubbed me the wrong way.

Hayley Bicker Puts Herself in a Box

Hayley Bicker, upset by an incident in the shop in Britain in which she worked where no one offered to help a mother when her autistic child got upset to the point of physically acting out, decided to raise awareness about the sensory sensitivity and communication difficulties that can accompany autism. She did this by spending 100 hours in a large glass enclosure in the store, her objective being to show that the difficulties that she had hearing and communicating through the glass and the sense of isolation that these difficulties produced for her was what autistic children experienced every day.

First, let’s give credit where it’s due – Hayley Bicker saw something that upset her and went to great lengths to do raise awareness about it. She got a charity involved and raised some money that went toward buying support equipment for families with autistic children in her community. There’s no doubt that her heart was in the right place, and kudos to her for acting when most people would not have.

However.

Hayley Bicker and Why “100 Hours in a Box” Is Problematic

I’m not sure how Hayley Bicker’s disability simulation raises awareness of issues associated with autism when she was the one in the box. She already knew about the issues. I’m not suggesting that other people should have been in the box, because I think that the logic behind the whole thing was a little flawed to begin with, but the odd execution of this particular disability simulation arguably made it even less effective than standard disability simulations, to my mind.

I thought about this later, however. My initial reaction after hearing Hayley Bicker say, “This is what autistic children experience” in a television interview was that she’d missed a couple of more important ideas

  • You can’t (and shouldn’t) say what autistic people experience if you’re not autistic. I guarantee that if I said to someone who’s always had the use of both hands, “Make a list of what’s difficult for me to do on a daily basis,” her or she would miss things. Why wouldn’t that be the case? I’d not expect that person to be able to speak with authority on my disability, any more than I should be able to speak with authority on the experience of what someone with, say schizophrenia experiences on a daily basis. The difference between me and Hayley Bicker is that I would not presume that I could, even though I’ve learned about schizophrenia in school and know people who have it. Bottom line, if you don’t have a given disability, you don’t know what people who have it experience, and people like me get irritated when you presume that you do know what we experience.  Who knows, maybe you educated guesses based on reading or on observation or on experience with someone in your life who has that disability come very close to describing what they actually do experience, but you don’t know. I’m not as militant as I sound on this – even if Hayley Bicker had said, “I consulted with some autistic people before designing this” or “Some autistic friends have told me that this is what they experienced as children,” I’d be prepared to give her a lot more leeway.
  • Not every autistic person experiences everything the same way From what I understand of autism (acknowledging that I’m still very much learning about it), it manifests differently from person to person. Some people may struggle very much with say, sensory issues, some not so much. Even if the experience of being in a glass box perfectly described what communication felt like for one autistic person, it may not describe it well at all for another one. If we’re going to spread awareness, let’s do it accurately.

The glass box itself is also problematic. While I understand the point that Hayley Bicker was trying to make, it’s my understanding that autistic people are trying to get away from imagery that portrays them as shut in their own little world and unable to communicate with the rest of us. Who wants to be associated with the image of being boxed away while the world goes on around you? We’ve already got groups like Autism Speaks speaking of autistic children as “gravely ill” and equating them with children who have gone missing. Awareness initiatives need to emphasize as much as possible that autistic people (and disabled people in general) are contributing members of our families and communities, and that communication barriers are largely society’s constructions that society must remove. Enough boxes, separation and isolation.

If Not Disability Simulations, Then What?

Andrew Pulrang asked what the alternatives are to disability simulations. I think that one alternative is making sure that disabled people have the means, vocabulary, and opportunities that they need to talk to others about what being disabled is like and what it means to them, if they so desire. I’ve worked with disabled people that others have assumed aren’t able to describe what their disability experience feels like, and heard them do with a great of insight. But I didn’t hear this from them right away. They first needed to know that it was safe to express those thoughts to me.

I also think that we need to make sure that non-disabled need to know that it’s okay to ask, “Is it okay if I ask you some questions about your disability?” if they want to. Not that disabled people should feel obligated to say “Yes”, or that they have to answer every question that’s asked. But I think that non-disabled people want to ask questions, that they’re genuinely curious, and are often unsure about which questions are okay and which aren’t, or if questions are even appropriate. Personally, even though I’ve heard some questions from non-disabled people that definitely are too personal given the relationship between the two people, I would much rather that people ask and, if necessary, have to pleasantly say, “I’m going to pass on that, if you don’t mind, because it’s a little too personal, but is there anything else that you want to know?”

This way of learning about peoples’ disability experience through talking with each other may take some training and practice for both disabled and non-disabled people, but I like it much better than the idea of learning about disabilities through disabilities through disability simulations.

If you have ideas for alternatives for disability simulations, Andrew Pulrang is collecting them over on his blog.

What do you think? Am I being too hard Hayley Bicker?

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When “Christmas” Doesn’t Mean “Family”

familyIn the grocery store yesterday, sharing Christmas greetings with an acquaintance, she said that she thought the most important part of the holiday season was spending time with family…didn’t I agree?

I nodded, because it seemed expected of me, but the question irked me. I’m not sure why I’ve felt especially this year, knowing that I will be surrounded by my own family for Christmas, a keen awareness that there are plenty of people in society who won’t. The assumption seems to be that everyone has a family to go home to for Christmas, or that people with family will be looking forward to that Christmas visit home, when that’s not always the case.

When Your Family Has Forgotten You – Or Doesn’t Even Know You

When intellectually disabled people in Ontario started to be moved out of institutions in the 1970s and 1980s, many of them didn’t have any family that they knew about. Doctors had advised families to institutionalize these intellectually disabled men and women as young children and to forget about them. So, as adults that had been raised in institutions, these men and women found themselves without any family that they knew of (although some of them may have certainly had families, perhaps even family members that had never even been told about them) and in towns where support agencies had spots for them, with no connections at all otherwise.

I volunteered at agencies where staff used to invite the people they supported into their homes for holidays, to give them a place to go. It seemed natural to me, as staff were already providing most of the functions that a family would for these people anyway. But when I went away for school to train to work with intellectually disabled people, I was told that this was wrong, and that staff shouldn’t be acting as friends. If people were going to go away for Christmas, my instructors said, they should be making friends in the community and visiting their homes – they should have non-staff friends.

I understand now what my instructors were trying to say, but at the time I was angry. “Show me the families that will do this,” I said, Sometimes I still say this, when I hear people suggest that the government shouldn’t be caring for disabled people, but that volunteers and churches should be doing it – “Show me the families”.

“Show me the families that will do this,” I said to my professors, “and tell me what’s wrong with an agency person opening their home, on their own, unpaid time, to a person that they support, for the holidays,”

This was one of the first of many things on which both faculty and I refused to budge, but the trend has gone in favour of faculty’s position that day – and I do understand why. A natural support is always better than a paid one.

But it does leave people alone on Christmas Day.

(If you’re at all familiar with the abuse that people suffered in Ontario institutions like Huronia Regional Centre, I think that you’d suspect as I do that Christmas alone is infinitely preferable to never leaving an institution at all. But that’s an assumption on my part. I’ve never asked anyone about this.)

And it’s not really the point, anyway.

Christmas Isn’t Just for People with Family

My family used to have Ivy over at Christmas (we don’t now, for a variety of reasons), but Ivy is my very special friend and we didn’t think anything of it. I believe that we were an exception. There’s still a perception out there among people that don’t have experience with intellectually disabled people that friendships with them are too difficult and too much responsibility, let alone invites home for holidays. This is slowly changing, as society in general starts to have more access to intellectually disabled students through integrated programs in school and in adulthood in workplaces and churches and community activities. After all, Ontario doesn’t institutionalize intellectually disabled people anymore.

But in many ways they still walk on the edges of communities. They aren’t fully integrated. Friendships with the “normals” don’t come as easily.

Like any other demographic in society, some without families are fine with spending Christmas alone. But some aren’t.And, of course, this isn’t the only group in society with some members that may not have family with which they can spend Christmas, or who just can’t, as much as they’d like to, spend Christmas with family. Essential services have to stay running, and people have to work in order to do that. Some people simply live too far away from family to get home every year. Some people have lost family members, or whole families, and are doing everything they can to hang on at Christmas.

If you’re spending Christmas with family, I hope that you enjoy it, and I sincerely wish you and all your loved ones all the best in the coming new year. And if you’re alone, whether it’s by circumstance or choice, merry Christmas and all the best of the new year to you as well…the joy of this season isn’t just for those who are surrounded by family, and I hope it finds you well.

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No Charges in Ethan Saylor’s Death, says Grand Jury

ethan saylorI normally don’t like to reuse my posts, but I knew, when I heard that the Grand Jury decided that no one would be charged in the death of Ethan Saylor, that I had to write something…and I liked what I originally wrote just after the 26-year-old with Down Syndrome died after being restrained by off-duty police moonlighting as security guards in a Maryland movie theatre.

The lack of a Grand Jury’s indictment hits especially hard after no Grand Jury indictment after the death of Eric Garner. Like Garner, Saylor was a large, unarmed man. The position in which the police restrained him made him unable to breath, contributing to his death (ruled a homicide by the medical examiner). Also similar to Garner’s case, accounts differ on what actually happened to make the three officers handcuff Saylor and position him on his stomach, but the cases have one thing very much in common:

Neither man deserved to die for what he did.

I’m not going to comment on the role of race in Garner’s death. I have my own thoughts, but others have expressed them much better than I could. I will say that the other commonality in these two cases, that a police throw down and restaint on the stomach was the go-to when the officers felt threatened, is extremely troubling because, obviously, it was very dangerous for these individuals and presumably could be for other heavy individuals. A chokehold was used on Garner that had been disapproved for use by the NYPD for over 2 decades. Police need to know that restraints are powerful and have potential consequences when not performed properly. I can’t think of anywhere I’ve worked where, if staff performed a restraint and it contributed to someone’s death there wouldn’t be (pardon my language) fucking hell to pay. Police need to be held to the same standard.

And for those that think I’m just hating on cops…I’ve had to work with the police several times in my career, and I found that all of them treated the people I supported with patience, respect, and empathy. I’ve got a great deal of respect for the police and for what they do. But, as Jon Stewart said the other night, “You can truly grieve for each and every officer lost in the line of duty in this country and still be troubled by cases of police overreach. Those ideas are not mutually exclusive. You can have great regard for law enforcement and still want them to be held to high standards.”

Ethan Saylor’s “crime” was that he wouldn’t leave a movie theatre – he wanted to view the movie that he’d just seen again. To make a point about an $11 movie ticket (for which the person with him could have conceivably left the theatre and stood in line to pay), the movie theatre manager called in the off-duty cops, and not long later Ethan Saylor was dead. That’s not right, and it’s not right that the Grand Jury doesn’t think that someone needs to answer for it.

I wrote about Ethan Saylor, his death, and the events leading up to it in April, 2013:

Ethan Saylor: Death in a Movie Theatre

The Justice Department has advised both the family of Ethan Saylor and disability advocacy groups that the 26-year-old man’s death may warrant an investigation under the Americans with Disabilities Act or the Civil Rights Act. Ethan Saylor, who had Down Syndrome, died after being restrained by three police deputies moonlighting as mall security officers when he re-entered a Frederick, Maryland movie theatre after the screening of “Zero Dark Thirty” for which he’d paid to see had ended, refusing to leave. Read more

The medical examiner found that while Ethan Saylor’s “developmental disability, obesity, atherosclerotic cardiovascular disease and a heart abnormality” contributed to his death, he ultimately died from asphyxia, caused in part from being restrained on his stomach in a position where he could not breathe.  The M.E. ruled his death a homicide, but none of the deputies involved were charged. The grand jury felt that they’d acted in accordance with their training and not responded improperly, given the situation.

Disability advocates disagree, however, arguing that Ethan Saylor was restrained unnecessarily and improperly. Concerned by the precedent that the ruling sets, and by what the entire incident says about the quality of disability training that Maryland police receive, they are calling for an inquiry of exactly went on in the movie theatre.

Ethan Saylor’s Death, the Media, and Conflicting Details

I find it fascinating that apparently we really still don’t know what went on in the theatre, as, according to one source, seventeen witnesses to Ethan Saylor’s restraint, including the attendant that was with Saylor at the time, were interviewed afterward. Sources disagree on a number of basic issues.  According to disabilityscoop.com, the grand jury’s statement described Saylor as “verbally and physically resistant“, while this news accounts say that he merely “cursed at the deputies and used profanity.”.  The distinction is important, as is the definition of “physically resistant”, which could range from not responding to a hand on Saylor’s shoulder to behaviour that put himself or others in physical danger, which might call for use of a safe, properly-administered physical restraint, such as one sanctioned by the Crisis Prevention Institute’s Non-Violent Crisis Intervention.

The fact that there’s so disparate reporting over basic elements of a story that unfolded in a public place really disturbs me. This article does suggest that while Ethan Saylor  hit and punched the deputies, it also says that he idolized the police and loved talking to them, to the point where the family would get complaints that he was bothering them with his requests that they come to his house to visit. It’s also in this article (but no others that I found) that we learn that the deputies weren’t in any kind of uniform during this encounter – they looked like men off the street, engaging him in a physical confrontation that went, according to the autopsy report, from one deputy touching him to all three trying to forcibly remove him, to a point where all eventually “all fell into a heap“, to Ethan being handcuffed. If Ethan did fight back, can he really be blamed?

Executive director of the Down Syndrome Congress David Tolleson, however, speaking with 930 WFMD, was clear on this: “…there was no emergency. There was no public safety safety issue for Ethan to be restrained on his stomach.” . Family lawyer Joe Epso agrees that the deputies acted improperly, saying that the deputies should have said that they’d prefer not to handle the situation when asked to by the movie theatre manager rather than use three sets of handcuffs to restrain Ethan Saylor’s hands over his stomach.

Ethan Saylor: The Training Issue

Sheriff Chuck Jenkins says his deputies are trained in how to handle persons with disabilities, but is that training wide enough in scope and sufficiently thorough? As a comparison, the mandatory disability training for New York police doesn’t include a component on intellectual disability. In fact, it doesn’t distinguish between intellectual disability and mental illness. Read More  Maryland police Cpl. Jennifer Bailey’s assurances that “all sworn and civilian staff members got training in dealing with people with mental health issues from the Frederick County Health Department in 2011″ also suggests that training on mental health disability is also intended to serve as training on intellectual and/or developmental disability as well.

Even intellectual and developmental disability shouldn’t be regarded as interchangeable terms, let alone ones that are interchangeable with mental health disability.

And anyone who’d been properly trained in doing any sort of work with individuals with Down Syndrome in a context where restraint is considered a potential response to behaviour  should understand (aside from the general principle that restraint should be last resort) that there are physical issues associated with Down Syndrome that may make restraint problematic or even dangerous: heart problems are common among the population in general, their limbs are often proportionally shorter than those in people without Down syndrome, and obesity is often an issue. Training should also include insight into how early-onset dementia(sometimes very early-onset, compared to non-disabled peers) may be a factor in behaviour  and that the intellectual disability associated with Down Syndrome may make it difficult for the individual to understand everything that’s happening and what’s being asked of them. Like all of us, an individual with Down Syndrome’s reasoning abilities may take a further hit in frightening or stressful circumstances.  Behavioural interventions require patience, empathy, and clear communication – not necessarily restraints.

When restraints do become necessary, the Crisis Prevention Institute Non-Violent Crisis Intervention Protocols (which focus mainly on de-escalating a crisis verbally so that a hold or restraint doesn’t become necessary, but that may not have been an option in this case by the time the deputies became involved – it’s not clear from accounts what  Ethan Saylor’s agitation level was when they stepped in) ensure the safety of the individual being restrained and the people doing the restraint. They’re less dramatic and traumatizing than a full throw-down involving three grown men. And you can still immobilize and transport a large person even in a restrained position, and know the minute that they’re in distress so that you can release the hold immediately and re-evaluate the course of action.  There would be many more options than pile-ons and cuffs, and perhaps Ethan Saylor would still be alive today.

Even if they’d put Ethan Saylor in a the CPI-sanctioned two-person hold, transported him out of the theatre and into a room away from the public, and had to have him stay in the hold until his mother arrived and could assist to de-escalate the situation (again, the press seems mystifyingly divided on whether or not she’d been called), that’s better than improperly restraining a man and killing him.

The Bottom Line

Don’t misunderstand me: If Ethan Saylor wanted to see the movie again, he should have paid for another ticket like everyone else. And sometimes safe restraint is a necessary step to ensure everyone’s safety, when all other options all exhausted. But yelling, or even striking in anger, at an off-duty police shouldn’t be a death sentence. If Ethan Saylor died because there’s a gap in the Maryland police’s disability training (or the training for other crisis response organizations), then that gap needs to be addressed. Perhaps they don’t know just how much they don’t know, and so have no idea what questions to ask…or who to ask.

How do we start this dialogue? How do we make sure that this doesn’t happen again?

More on the Crisis Prevention Institute: http://educate.crisisprevention.com/

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