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.

 

Comments { 2 }

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?

 

Comments { 4 }

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?

Comments { 2 }

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.

Comments { 9 }

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/

Comments { 3 }

Goodbye, Stella Young

“That quote, ‘the only disability in life is a bad attitude’, the reason that’s bullshit

is….No amount of smiling at a flight of stairs has ever made it turn into a ramp.

No amount of standing in the middle of a bookshelf and radiating a positive

attitude is going to turn all those books into braille.”

Stella Young, 1982 – 2014

stella youngIt seems like the disability advocacy community, despite being quite large and spread out all over the over the world, becomes very small when it loses one of its own. I saw it when activist and blogger Elizabeth McClung died after her long illness, and I’m seeing it last night and today as people process the news that Stella Young has died. I can see my sense of loss reflected back to me from Facebook and Twitter, and I’m sure that I’ll see it from other bloggers today.

I never met Stella Young, but her writing both validated thoughts that I was having about disability and opened my eyes to things that I hadn’t thought about, and I’ll always be grateful to her for that.

About Stella Young

Born in Australia, Stella was doing advocacy work in her community from the age of 14. She became the editor of the Australian Broadcasting Corporation’s “Ramp Up” site for news and opinions about disability. She also sat on a number of boards and committees to further disability advocacy causes, did writing about the Paraolympics,  why she called herself a “crip”, and other disability issues, and hosted eight seasons of “No Limits”, a disability culture television program.

Also a comedian, Stella Young was a two-time state finalist for the  Melbourne International Comedy Festival’s Raw Comedy Competition.

Read more about Stella Young here

Stella Young and Me

The first of Stella Young’s essays that I read was about genetic testing for disabilities.  She described an incident on a bus:

“A few years ago I was approached by a nervous looking woman on a tram on my way home from work. “Excuse me,” she said. “Do you have Osteogenesis Imperfecta?” With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it’s because they know someone else with it. So I was surprised by her next line. “I was pregnant with a baby with OI and I had a termination.” I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn’t quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, “I made the right decision.” Then she got off the tram.”

You can read the whole thing here. She went on with the discussion about genetic testing without discussing her personal reaction to the incident, but it thoroughly shook me. I just couldn’t imagine what would possess a person to speak that way to another person.

Maybe it shook her more than she indicated, too. But she usually wrote very honestly about her experience, and this really didn’t seem to affect her all that much. And I remember thinking, “Wow – I want to be that comfortable with being disabled, that immovable in my belief in my inherent worth as a disabled person, that hearing something like that wouldn’t get to me.” Because I’m pretty comfortable with myself, but I don’t know if I’m that comfortable.

I knew that I wanted to hear more from Stella Young.

Stella Young: I Am Not Your Inspiration, Thank You Very Much

Stella Young’s TED talk about why she doesn’t like inspiration porn is very thought-provoking and still widely-shared, despite being out on the internet for quite some time. I remember putting it up on the Facebook page.

This makes my advocate heart soar.

Rest in peace, Stella, We won’t forget you.

Comments { 1 }

Intellectually Disabled Adults and “Age-Appropriate” Interests

intellectually disabled adultsWell, I’m back :) I finished my 50 000 words for National Novel Writing Month with a day to spare, took a couple of days off, and am ready to get back to my regular writing routine. And to start it off…yesterday I got an interesting email from a colleague with some thoughts on the about the perception within the support community that it’s important to encourage intellectually disabled adults to engage in “age-appropriate” activities. It got me thinking.

I’ve been lucky enough to see agencies wrestle with this idea, and come out on the side that if intellectually disabled adults find joy in an activity that isn’t “age-appropriate”, there’s nothing wrong with it, but apparently it’s still an issue for some people. I can see reasons why it’s a concern – intellectually disabled adults tend to be infantilized by society (and even by agencies) as it is, and why would staff want to encourage behaviour that feeds that dynamic?

But, as a society, we’re reasonably tolerant of non-disabled adults who choose to engage in “non-age-appropriate” activities. Comic Con conventions are full of adults who love to play dress-up (and their costumes are awesome, by the way). Plenty of adults collected Beanie Babies when they were the rage. I love to play with Lego, and doesn’t everyone have a favourite Disney cartoon?

And, as my colleague suggested, when non-disabled adults draw we call them artists; when intellectually disabled adults colour, we label their interest in art “non-age-appropriate” and take the crayons away.

Intellectually Disabled Adults are…Adults

I have a friend who collects knives. I don’t get the appeal. But I’m not interested in telling people what their interests should be (unless pursuing those interests is harming others), whether it’s a very “grown up” interest like collecting the labels off of wine bottles or whether it’s making window decals using a kit (which I used to do). I’d like to think that most adults feel the same way about other adults with whom they associate. But even though I think there’s increasing awareness that (gasp!) intellectually disabled adults are adults too and should have the right to choose their own interests, regardless of how “age-appropriate” they are. there are still some problematic attitudes about the whole business.

It’s a double standard. Especially so in light of the fact that while we insist that intellectually disabled people have “grown up” interests, we all too often don’t acknowledge that they’re grown-ups in other life spheres:

  • We don’t provide comprehensive relationship training and sexual safety education
  • There’s still not nearly enough education about self-advocacy skills and talk about why they’re important
  • People still don’t have much control when it comes to their services and who provides them.

These things aren’t constants across all agencies, of course. Some agencies are doing a fine job with relationship training and sexual education, and are making great strides with self-advocacy. And Ontario’s transformation of services over the last few years has been all about giving people more control over services.

However, it’s important that we as support people get our collective heads on straight on whether we want be a culture that supports all the adult rights of intellectually disabled adults, whether we’re going to continue on this path where we look at them as children (which is not only unfair to the people we support, but sends a message to society that it’s okay to do so as well), or whether we’re going to go between both points of view, picking and choosing when we view intellectually disabled people as “adults” according to when it’s comfortable to do so.

The last option isn’t acceptable, in my opinion. We have to go one way or the other.

And don’t we all know which way is the right way to go?

 

Comments { 17 }

Still Here – NaNoWriMo is Eating My Brain

nanowrimoWell, it’s been almost a month since I posted here, which is the longest I’ve let the blog go without a post since…last November. Not because there haven’t been things that need talking about, because God knows that there do, and I’ve been trying to put some of them up on Twitter and Facebook…but because it *is* November, and if you look at the archives, the blog traditionally gets a little neglected around November because it’s National Novel Writing Month (NaNoWriMo) and I’m off writing a 50 000 word novel of very questionable quality within 30 days.

I had hoped to get at least one blog post up this month, but it looks as if it might not happen, so I thought I’d just let everyone know that I’m still here…

“She’s Doing that NaNoWriMo Thing Again”

This is my seventh year (not consecutive; I started in university and did it sporadically, and unsuccessfully, for three years) of joining what is now 400 000 would-be novelists from around the world in trying to get a 50 000 word novel penned during the month of November…just because. NaNoWriMo doesn’t end with publishing contract or a prize, just the satisfaction of reaching that goal.

And I’ve reached that goal for the last three years. I have three approximately 50 000 word NaNoWriMo novels sitting on my hard drive and lots of other writing, including this blog, that I enjoy doing. So why another one? Because while this year I’ve been very good at keeping up with the amount off writing required in order to finish NaNoWriMo on time (approximately 2000 words a day for me, to create a bit of a cushion for days when there’s not enough time to write the required 1667 words per day), I haven’t been that disciplined in the past. Last year I pulled two “10 000 Word Weekends” in order to finish my NaNoWriMo novel on time.

And sometimes NaNoWriMo is a real slog. It’s generally really freeing, since writing so quickly forces me to turn off my inner editor, to just write and not go back and change anything, even if it means that I end up changing a character’s name halfway through the book because I can’t remember what I called her the last time she appeared, or something I write creates a plot hole that you could drive a truck through. Second draft problems. But some days those 2000 words don’t come easily.

Yet I keep doing this every year, I’m sure to the confusion of those around me.

Why NaNoWriMo?

For one thing, I don’t write much fiction anymore, which  is something that I really do enjoy. NaNoWriMo gives me permission to devote a whole month to it, which is decadent is my writer’s world. Even if the end product isn’t as good as I’d like it to be, it’s 50 000 words of content with which I can work, should I ever decide to, and that’s pretty cool.

But I think that it also has to do with the process of…not recovery, still struggling with that word….taking a second look at my life that I went through after I acquired my disabilities. Some of the things in my life that I really liked to do, as much as I struggled to keep them a part of my life, just weren’t as accessible anymore, or accessible at all. It was a long time before I started taking adult ballet classes, to see if I could handle any of it, and I was pretty much limited to the barre and to certain exercises at that. Any dreams of doing Highland dancing again were certainly out. Theatre? For a long time I had myself convinced that acting was no longer an option…which I’ve now reconsidered…but I’m cautious. Attitudes being what they are, I question whether I’d actually get cast in a part where the person wasn’t physically disabled, and there aren’t a lot of physically disabled characters in theatre’s classical repertoire. Certainly any musical theatre that requires dance is out.

I did rediscover after my stroke, however, that I like to write. I like blogging. I like writing fiction. I even like writing poetry, sometimes.

I was always asking the kids that I worked with, when we were talking about what they might want to do when they graduated from school, “What do you like to do?” And when they told me, I’d say, “Well, let’s find ways for you to do more of that, then.”

If there’s something that you like doing, and it’s not hurting anyone else (and it’s legal) you should do it.

So I will NaNoWriMo. Because I like it.

See you in December, hopefully with a fourth NaNoWriMo novel under my belt.

 

 

 

 

 

Comments { 0 }

Nancy Fitzmaurice, Assisted Suicide, and Assumptions

nancy fitzmauriceSo, a legal first happened in Britain over the summer, the news of which is just coming out now, and it should have all of us concerned. Nancy Fitzmaurice, a 12-year-old disabled girl, was killed in a London hospital in August, and it was all legal. Her parents fought in court for the right to terminate her life, and the judge granted it.

This is the first time a British court has “allowed a child breathing on her own, not on life support and not diagnosed with any terminal illness, to be killed by the medical system.” (ASAN Position Statement).

William Peace over at Bad Cripple has been blogging for a long time about the danger of something like this happening, as the struggle to make assisted suicide legal in Canada and the US has intensified. And I’ve come to agree with him. I do support the idea that people should be able to dictate the terms of their own death, but the legislation that would permit that needs very specific and stringent safeguards to protect disabled people from having other people dictate those terms.

Especially children. Not that we’ll ever know ever know how Nancy Fitzmaurice felt about her situation one way of the other.

I realize that opponents will argue that we couldn’t have known anyway. Nancy Fitzmaurice couldn’t speak, or walk, eat, or drink, for that matter; she was born with hydrocephalus, meningitis and septicemia  (Read more here). But that’s the point, really. Nobody truly knew how she felt about dying, or whether she’d have tried to stop the process of death by dehydration at any point if she could have communicated that she wanted to. Everyone assumed that she’d rather die than live, and made killing her legal based on that assumption, and the ASAN Position Statement points out that media coverage hasn’t included the voices of those with disabilities similar to Nancy Fitzmaurice’s, to give a counterpoint to the narrative that she could never have any quality of life.

That’s dangerous to me, and deeply ableist. No responsible judge would rule that assisted suicide is appropriate for a non-disabled child, even one in extreme pain, who didn’t have a terminal disease. Even if a 12 year-old who was terminally ill made the request, I would like to think that doctors (and judges) would recognize that:

1) At 12 years old, most children aren’t developmentally capable of appreciating all the consequences of that request and

2) Palliative care should be the alternative at that point, not assisted suicide.

If anyone knows of a situation where a non-disabled, terminally ill minor asked for the right to physician-assisted suicide (or the family asked on the minor’s behalf) and received it, by all means let me know. Let’s tackle whether this would actually happen before we tackle whether a non-disabled minor, non-terminal, but in extreme pain, would receive the right to a physician-assisted suicide.

Actually, no need to tackle it. I guarantee that it wouldn’t happen.

Nancy Fitzmaurice was not terminally ill, and assisted suicide cannot replace pain management in disabled people because some non-disabled people think, “I could never tolerate such low quality of life, therefore this person must not be able to either.”

This is all about assumptions and what happens when you throw legal clout behind them.

Nancy Fitzmaurice and Assumptions

When I woke up after brain surgery, I was still intubated. I wasn’t expecting this, and I initially wasn’t expecting the tube to stay in for long. However, the doctors were keeping it in for a reason: They thought that there might need to be more surgery. No one presumed in that (non-emergency) situation, however, that it was okay to go ahead with it without:

1) Ensuring that I knew what was going on

2) Getting my consent

We figured out how communicate through me blinking my eyes, and I let them know that I understood the potential need for more surgery and consented to it.

If someone *ever* makes assumptions about what I must want for my healthcare, based on the fact that I’m disabled, they will rue the day, and I’m not worried about a doctor trying to talk my family into anything if I can’t speak for myself – my father and sister get it.

I just wish that every disabled person was so lucky, because Nancy Fitzmaurice’s parents would like to see what they’ve done made legal without having to go court. They’d actually like doctors to be able to make these decisions, to spare the parents. (Read more here)

I know that there are people out there who would accuse me of having no empathy for the parents. I actually do. I have children in my life that I love to pieces, including a 3-year-old niece. If I had to watch her in extreme pain, day after day after day, not being able to do anything about it..well, here’s what I wrote about Robert and Tracey Latimer, in my post about Kelli Stapleton:

“Even at that age (15) I could appreciate how difficult it must be to watch your kid in pain and not be able to do anything about it…not even give her pain medication, because it didn’t work.  And to know that her body was just going to keep breaking down, requiring surgery after surgery, until keeping her together was going to be more painful than letting her fall apart. It had to be hell. How long could you really keep a father in prison who only wanted to spare his daughter more pain?”

But Robert Latimer (and Kelli Stapleton) went to prison. Nancy Fitzmaurice’s parents were legally permitted to do what Robert Latimer did to his daughter.

In order to understand why the legal assisted suicide of Nancy Fitzmaurice is so upsetting for disabled people, their loved ones, and advocates, I think that people need to understand that even though these kinds of decisions haven’t been legally made until August, they get made already. Babies with Down Syndrome are sometimes denied life-saving surgery because of concerns over their potential to have a good quality of life. A man with Down Syndrome (in the UK, no less) was issued a DNR during hospitalization for pneumonia that neither he nor his family knew about. I’ve blogged about two disabled people in the US, one of them a 3-year-old, where disability and was cited as a factor for why they were denied organ transplants (Amelia Rivera, the 3-year-old, did receive one eventually, but only after a battle with the Children’s Hospital of Philadelphia). The ASAN position statement talks about the University of Wisconsin Hospital’s “practice of counseling parents to withhold care from children with disabilities for treatable but life-threatening medical conditions”, including a young man with treatable pneumonia, who died after his feeding tube was removed – because people decided that he had no quality of life.

These are arbitrary, subjective, ableist decisions based on assumptions about what defines quality of life (and who does and doesn’t possess it/might ever posses it), with deadly results.  And now the power for others to make these life-and-death decisions for disabled people is supported by a legal precedent. The judge has opened an enormous can of worms.

And it’s not able-bodied people that are going to die because of it. It’s us. That’s why this is scary, and people need to understand that.

Nancy Fitzmaurice: The Bottom Line

I hate as much as anyone else that Nancy Fitzmaurice was in such pain, and that her parents had to watch it. But my heart also goes out to the 12-year-girl who loved listening to Michael Buble and who laughed when her mother slurped her tea.

This quote from Nancy Fitzmaurice’s mother really struck me: “I wanted beautiful memories of Nancy, not soul-crushing ones.” I’ve said before about stories like this that the children pay for what the parents want. I’ve got no doubt that Nancy’s parents loved her. But if I was to make an assumption about her, it would be that she wouldn’t want to be remembered as the little girl whose death gave hope to parents who think that it should be legal to kill a disabled child, even if their intentions were simply to end their loved one’s pain.

If we’re going to make assumptions about Nancy Fitzmaurice, I wish that the court had gone with that one.

 

 

 

 

 

 

Comments { 2 }

Cheryl Green is Making a New Film!

cheryl greenI’m so glad that Cheryl Green and I became friends this year.

I’d known her name for a while, but I felt moved to write to her personally after I read her essay about how  the brain injury community doesn’t seem interested in crip culture, in the “Criptiques” anthology. I wanted to wave my hand around and say “I am! I’m interested and I have a brain injury!”So I emailed her.

(My brain injury didn’t come from the trauma that we normally associate with brain injury, but there *was* someone rooting around in my head for fourteen hours, and my brain did react by bleeding into some places where blood really doesn’t belong, so yeah…)

I thought that she’d get what I was saying. And she did. We’ve had some great conversations – she really *gets* this stuff. She not only makes me feel like I’m on the right track with what I’m writing, but also gets me to see things in ways that I hadn’t even considered. When she interviewed me for her podcast, I felt like I was talking to an old friend.

I wrote to process becoming disabled, and later to start advocating for myself and other disabled people. Cheryl writes as well, but she also makes films. She’s got a new film in the works right now called “Who Am I To Stop It”.  I’m going to let her tell you about it in her own words!

Oh, by the way…on November 14, I’m going to be a guest host on another podcast with another disability advocate for whom I have a great deal of respect. I’ll be a Guest Host on Disability.TV with Andrew Pulrang, and we’ll be discussing disability in “The Big Bang Theory” (one of my favourite shows!) Visit Andrew’s blog to get details on his podcast and the other television shows that he’ll be discussing.

Now…

Cheryl Green Talks About “Who Am I To Stop It”

My story has a lot in common with Sarah’s. I grew up non-disabled. Years ago, I got involved in a disability storytelling project through VSA Texas. Although I was an Intern and Assistant, I became genuine friends with several people in the group. It was then that I realized the extent of segregation I’ve always seen in my community but never stopped to recognize.

How was it that I, in my late 20s then, had never had more than one or two friends with disabilities?

I had grown up with the idea that people in Special Education are “those people,” and the rest of us are regular. I had bought it hook, line, and sinker and done nothing to counter it. I didn’t see disability as a cultural group, an identity, or set of life experiences to be valued.

When the storytellers at VSA Texas took the stage and shared their stories, I had the pleasure of realizing that the sense of divide I finally could name was manufactured, and I wasn’t interested in silently condoning that divide anymore.

I stayed involved in disability art and moved from Assistant backstage to performer in mixed abilities settings. Along with ongoing friendships, I decided to go into a disability service career. When I made the decision, I still did not recognize the depth of stigma and devaluation of culture that happened in the service field. Although I now had several good friends who were disabled, I had not fully learned the depth of discrimination and oppression they faced constantly. Then, the learning came to me.

In 2010, years of accumulating mild traumatic brain injuries had finally caught up to me. I had always bounced back from them. Eventually. Changed, but good enough. Not anymore. The 2010 incident was worse than any I’d experienced in the prior 25 years of being a clumsy athlete. Life, career, even standing up straight all went on hold. I was thrust into a surreal world of fouled up cognitive and sensory processing that was nearly impossible to explain to someone who hadn’t been there. I quickly began to unfold the many layers of disability experience that include impairment and discrimination.

So I made a film that showed people how confusing my life had become. Then, I made another. Though still changed, I began to feel like myself. Or rather, I felt like I had a decent self. I asked myself whether other people who experienced disability from traumatic brain injuries (of any severity) might also turn to art to feel like they have a grounded sense of self. Turns out, there are a lot of people who do. A lot.

In September, 2014, I completed a feature-length documentary on three artists with brain injuries in the U.S. Pacific Northwest called “Who Am I To Stop It.” We are running a Kickstarter campaign online through October 31st to raise the funds for editing, color correction, sound sweetening, and developing disability access through Captions and Audio Description.

This film takes a very unique approach to brain injury documentary in that there are no stories of how people got their injuries, no medical professionals describing how the brain works, and no extended interviews. We took our film inspiration from the highly artistic, compassionate documentary “Marwencol,” with a primary difference being that one of the directors (me) has experienced disability from brain injury.

Please visit our Kickstarter campaign to see some clips from “Who Am I To Stop It.” Kickstarter is all-or-nothing funding. So we have to meet, or exceed, our goal to keep any of the money already pledged! I give my humble thanks for folks visiting the Kickstarter, donating if you are able to, and sharing the link with your communities.

Comments { 2 }

Stop Copying Plugin made by VLC Media Player