Ohio House Bill 214, Its Serious Implications, and Why I Can’t Support It

So this actually happened before Christmas, but deserves some comment, I think, for multiple reasons – the least of which being it got relatively little media coverage, given the GOP’s scramble in the weeks before Christmas to push tax reform through and to pass a funding bill that would prevent a government shutdown. But here it is: On December 15, the Ohio Senate passed a bill, Ohio House Bill 214, that “punishes clinicians for performing abortions that were sought specifically because of either a potential or a conclusive Down syndrome diagnosis“. They are the third state to put such legislation on the books, claiming that it will protect people with Down Syndrome.

The GOP is going about this the wrong way.  But, frankly, I’m not sure that they care.

Ohio governor (then a Republican presidential candidate) John Kasich speaks to a group of supporters during a town hall event before the Wisconsin presidential primary in Madison, Wisconsin on March 28. 2016. He is a white man with gray hair, wearing a dress shirt with black pants. He stands in front of a large American flag. Keyword: Ohio House Bil 214

Image Description: Ohio governor (then a Republican presidential candidate) John Kasich speaks to a group of supporters during a town hall event before the Wisconsin presidential primary in Madison, Wisconsin on March 28. 2016. He is a white man with gray hair, wearing a dress shirt with black pants. He stands in front of a large American flag

Content Note: Ableism, Abortion, John Kasich, Medicaid Cuts, Ohio Down Syndrome Abortion Ban, Sexual Harassment, Trump, UK Austerity Cuts

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I’ve talked in detail before about how I understand why laws like Ohio House Bill 214 seem like they  should be something that disability advocates should support as a no-brainer…and about why I don’t support them.

I know that women are routinely encouraged to abort fetuses with a Down Syndrome diagnosis.

I know that there’s a movement in support of eliminating the Down Syndrome genotype from the population.

I have loved ones who have Down Syndrome, and I’m grateful for their lives, their friendship, the contributions I see them making to their communities.

But I will never tell a woman, “Your reason for having an abortion is wrong.” It’s not my right. And I’m not the only one in the disability activist community who thinks so.

David Perry’s son has Down Syndrome. He’s made the excellent point that Ohio House Bill 214, under the guise of criminalizing abortion, actually criminalizes discussion between a woman and her doctor:

“…this law doesn’t hinge on the act of performing an abortion, but rather on whether there is “knowledge” of motivation for abortion. If the doctor is aware of a prenatal diagnosis as motivation, an abortion would be a felony. Without awareness, even if that was the woman’s motivation, an abortion could safely proceed. Therefore, the bill functions only to silence women after they receive their prenatal diagnosis—or, even worse, early pregnancy screening (note that such screenings are not accurate enough to be diagnostic)—lest a doctor begin to suspect their motivations and refuse to terminate a pregnancy.”

Ohio House Bill 214 makes it so that a woman seeking an abortion because she knows or suspects that the fetus she’s carrying has Down Syndrome is highly motivated to stay quiet about her reasons for wanting the abortion so that she’s not refused it.  And in this environment, the myths about Down Syndrome and stigma surrounding it continue to thrive – there’s no room for open, honest conversation with medical health providers and anyone who may report to them.

And, as I’ve said several times in this blog – if the GOP cared about disabled children, they would make it easier to raise a disabled child in America.

It’s also worth noting that the Trump administration is removing “guidance documents” about the ADA from its website. There was no explanation as to why, beyond a statement by Jeff Sessions that they were part of a broader removal of “25 examples of improper or unnecessary guidance documents identified by our Regulatory Reform Task Force led by our Associate Attorney General Rachel Brand.”

The GOP in the House and Senate don’t care about disabled people, it seems, except when it can use them as pawns to do an end-run around women’s constitutionally-protected rights to bodily autonomy.

Let’s Break Briefly from Ohio House Bill 214 to talk about Ohio Governor John Kasich

I remember this guy from the Presidential debates. I remember thinking, “Okay, I could live with him as President. He gets that there needs to be a safety net and that it’s unfair to demonize people for needing it.”

I should have listened more closely to those people who’ve been saying, “Don’t be fooled; John Kasich is no moderate.” In 2016, Politico summarized his actions to limit abortion access in Ohio:

“Laws signed by Kasich prohibit almost all abortions after 20 weeks of pregnancy, mandate ultrasounds before a woman can get an abortion and require abortion clinics to establish formal written agreements with local hospitals about emergency care — a provision that has been repeatedly modified to be even more restrictive and make it harder for clinics to comply. “

It’s too bad, because Kasich reminded me (or he used to) that not all of the GOP are from that school of Paul Ryan and Mitch McConnell and their cronies (I’d say Trump, but I figure that Trump only identifies as GOP because he can go the furthest with them; he’s not a Conservative) that don’t seem to have much use for marginalized groups or much interest in helping them.  I know that there are Republicans, because I talk to them, who are quite socially aware: they’ve done their research on social issues, they speak with insight, and while I may not always agree with them on all things, the conversations are always thought-provoking.

I wish more of them would run for office, damn it.  Because it’s becoming difficult – so difficult – not to become totally disillusioned with the current crop of GOP in the House and Senate, watching them throw my friends in the US under the bus again, and again, and again.

(Not that there are Democrats that are doing it too – as I wrote earlier, I’ve been disturbed, and upset on female American friends’ behalf, by some of the Democrat rhetoric around sexual harassment in particular recently. Its hypocrisy seems to have increased in the last little while, and I think it’s important to call that out, because I like to be fair.)

But that, at this point, is not affecting legislation. The tax bill and the repeal of the individual mandate affects especially my disabled friends that are, for a variety of reasons:

  • Most affected by cuts to Medicaid
  • Unlikely to benefit from the tax cut.

Cuts to Medicaid mean that disabled people lose services that they depend on; some will no longer be able to live independently; some will die. This is the way it happened in Britain  with the austerity cuts – the government thought that it could save money by making cuts to supports and services to disabled people and to the National Health Service, and people died – in excess of  120000 deaths were estimated to be linked to austerity cuts, as of November 2017.

But back to Ohio House Bill 214…

America, Meet Me at Camera Three

Ohio’s House Bill 214 is not an indicator that the GOP cares about people with Down Syndrome; it’s a blatant attempt by the GOP to emotionally manipulate the public into supporting an (albeit limited) ban on abortion – after all, who could object to measures designed to stop the abortion of disabled children?

I object, as I said earlier.

Ohio House Bill 214 is  totally typical of a government more committed  to fetuses than it is to making sure that American families have what they need to raise children, and I won’t feel like the monster that Ohio lawmakers want me to because I can’t support it. Using a fetal diagnosis of Down Syndrome as a way to further an anti-abortion agenda is pretty objectionable – a similar law was found to be unconstitutional in Indiana, and another in Louisiana is being blocked by the court –  so he hasn’t got much moral ground to stand on here. Dr. Leesha Thrower, whose daughter has Down Syndrome, said it better than I can:

“These politicians do not care about my six-year-old daughter. If they did, they would be using their valuable time to make sure that every child born with Down syndrome has what they need to live a healthy, full life…I want my leaders to have my back, and my child’s back, instead of using her as a pawn in a political effort that is only going to harm women and make it harder for them to make the right decision for them and their families.”

Well said, Doctor. Well said.
Happy New Year, folks. Let’s make 2018 a good one.

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Toronto District School Board Gets “Proactive” About Indigenous People

Jobs within the Toronto District School Board done by “Chiefs” will now be done by “Managers”, out of respect for Indigenous cultures.  The move was taken after considering the calls to action of Canada’s Truth and Reconciliation Commission, which published a report in 2015 about the Canada’s history, stretching over a century, of placing Indigenous children in residential schools.

The issue is that no one had complained. Toronto District School Board Curator of Indigenous Arts and Culture Dan Redbird says no one from the Indigenous community asked for the change, and that “Chief” isn’t a word that has anything to do with Indigenous traditions.

“It was an imposed word that the government introduced with the Indian Act back in the 1800s.” Redbird told Nick Bosvert of CBC News.  

He acknowledged that it’s come to be used as a micro-aggression, and likes that the Toronto District School Board has taken the step, but “doesn’t envision a dramatic impact from the change.”

Image Description: Young white woman wearing a white blouse and dark blazer rests her head on her laptap keyboard. Her long brown hair is in a ponytail.

Content Note: Residential Schools, Nothing for Us Without Us, Abuse, Missing and Murdered Indigenous Women, Forced Sterilization, Retard

Toronto District School Board Wants to be “Proactive”

Here’s some more about the word “Chief” that I learned from an interview on CBC Radio One’s “As It Happens” on October 11:

  • It means “leader”
  • Its origins are Roman and Old French
  • In French, it’s “chef” (which the Toronto District School Board will not be replacing)

The changes that the Toronto District School Board plans to make affect approximately 20 job titles.

I have thoughts.

The “As It Happens” interview was with  Ryan Bird, the Toronto District School Board’s Manager of Corporate and Social Media Relations. The interview in its entirety can be heard here.

Click for a transcript, at “Toronto District School Board: No Chiefs”

I was in the car with my father as we listened to the interview, and it wasn’t long before I turned to him and said, “And here’s where my friend Geoff would say, ‘Did anyone complain about this?'”

Just as interviewer Carol Ott said, “Did you get complaints?”

Geoff and I have been around and around on the issue of people deciding for other people what *should* offend them. Often it’s been disability-related – Geoff has asked why people who aren’t disabled should decide what terminology should offend disabled people, like the word “retard”, and I’ve said, “I didn’t decide that ‘retard’ should offend intellectually disabled people – they’ve told many people themselves that it does.” More recently, it’s been about the choice to keep Washington’s football team the “Redskins” – Geoff says that Indigenous people don’t find the name offensive, and sends me media clips and articles that support his position. I have media clips and articles of my own by Indigenous people that do find it offensive. We do what we do in our debates on most things – agree to disagree.

And if an organization using “Chiefs” instead of “Managers” is offensive to some or all Indigenous people, the terminology should change. I’d absolutely support the Toronto District School Board ( or any organization) talking to the Indigenous community regarding changing anything that they see as potentially concerning , asking “Would changing this be healing?” and acting on those recommendations. But the Toronto District School Board didn’t do that, or if they did they appeared to reject the recommendations of the community, in favour of being “proactive” (Ken Bird’s word) – deciding for the Indigenous community that they *should* find the Toronto District School Board’s use of “Chiefs” offensive, and therefore worthy of addressing before people started to complain.

And they’re wondering why there’s been mixed reaction to their move that they didn’t anticipate.

“Nothing for Us Without Us”

The disability advocacy community has a saying – “Nothing for us without us”.   It reminds people that make the decisions that affect disabled people that disabled people need to be involved in the process. Policy that’s meant to help disabled people, made without consulting disabled people, could end up being useless to us.

“Nothing for us without us” kept going through my mind as I listened to this interview. The point of the Truth and Reconciliation Commission and its final report was to document the ways that Canada’s government hurt Indigenous people with its insistence that it knew better than their communities how to raise their children (and the horrific abuse that went on in the residential schools) and exploring ways of “establishing and maintaining a mutually respectful relationship between Aboriginal and non-Aboriginal peoples in this country.”

My opinion only, of course…but it’s not “proactive” or respectful to make policy based on what non-Indigenous people think should insult Indigenous people without consulting them, especially when:

  • There’s plenty of easily-accessible evidence out there to suggest that this might not be the case – in this case, commentaries on the word “chief” and its origins, as well as its relationship to Indigenous communities, by both Indigenous and non-Indigenous people. They all agree – it’s a word imposed on Indigenous people, not one with any significance to Indigenous people themselves.
  • There’s no indication that the issue that the policy addresses is actually an issue.
  • The “proactive” behaviour is actually an example of historically problematic behaviour – Non-Indigenous people deciding that they know what’s best for Indigenous people and going ahead and doing it, without caring what Indigenous people think about it.

Again, not “proactive” – offensive. I find it offensive, at least, and there seems to be some evidence that Indigenous people do as well. Indigenous Canadian author Robert Jago expressed his feelings on Twitter:

Are Good Intentions Always Enough?

I’m not suggesting that the Toronto District School Board didn’t have good intentions. I’m suggesting  its action was tone-deaf.

I’m not an Indigenous woman, and I won’t pretend to know what it’s like to live in an Indigenous person in Canada. But have an imagination, empathy, and as a disabled woman, membership in a group with a similar (not identical, but similar) history of forced institutionalization by the government in highly abusive environments, marginalization, and ongoing discrimination…and hearing about this action by the Toronto District School Board, the rationale behind it, and their self-congratulatory pats on the back for it, made me furious.

I’m a writer and I believe in the power of words to shape attitudes and actions. I’ve had this debate with friends as well. But reconciliation won’t happen because 20 people in a school board get a word in their title changed. You want to make an impression on the kids your schools, Toronto District School Board?  Get some Indigenous speakers in to talk about life for kids their age in reservation towns like Attawapiskat.

Let them learn about the class action suit launched earlier this month by Indigenous women, alleging that they’d been sterilized without consent in the 1990s.

Let them hear stories from the families of over 1000 missing and murdered Indigenous women.

Let them hear stories and ask questions, and find out how they can help. I guarantee that some of these kids have never thought about these issues before simply because no one’s ever talked to them about them…and that once they’re thinking, they’ll want to learn more…and get involved in the dialogue between Indigenous and non-Indigenous people about the best ways to bring about reconciliation.

Dialogue, not assumptions. Dialogue will bring about change – it won’t be as easy as changing signs on office doors and printing out new business cards for 20 employees, but it will be deeper and more effective and we’ll all be better people for it.

All That Being Said…

Perhaps there are Indigenous people on the Board at the Toronto District School Board who thought this move was a good idea, and the Board was acting on their guidance. If that’s the case, people should please let Ken Bird know that he needs to speak to this – because nothing in the nearly-eight-minute interview with “As It Happens” or in the multiple media accounts that I read suggests that the Toronto District School Board made this change with any consultation from the Indigenous community.

As always, feel free to correct me if I’m wrong about any of this.

Michelle Sutton, Autism and Self-Diagnosis

In 2014, Jerry Seinfeld, in an interview with Brian Williams, said, “I think – on a very drawn-out scale, I think I’m on the spectrum.”

Asked what made him think that, he said, “You’re never paying attention to the right things. Basic social engagement is a struggle. I’m very literal; when people talk to me and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as dysfunctional. I just think of it as an alternate mindset.”

Content Note: Self-Diagnosis, Support/Services Eligibility

Jerry Seinfeld at a premiere, waving to the camera with one arm while his other hand is around his wife Jessica's waist. Keyword: Michelle Sutton
Jerry Seinfeld
“Bee Movie” LA Premiere
Mann’s Village Theater
Westwood, CA
October 28, 2007
©2007 Kathy Hutchins / Hutchins Photo

Image Description: Jerry Seinfeld at a premiere, waving to the camera with one arm while his other hand is around his wife Jessica’s waist.

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The Autism Community Reacts

I remember anger from the autism community at his comments, like Kim Stagliano’s reaction, Ginger Taylor’s article (I remember this one specifically), and this post from Autism Daddy’s blog.

I don’t remember picking up on this distinction: The people who felt most negatively about Seinfeld self-diagnosing himself seemed to be parents. Autistics like John Elder Robison seemed more positive, encouraging the autism community to welcome Seinfeld. Lots of excellent points in his article.

But I don’t remember reading it in 2014. I don’t much positive reaction at all to Seinfeld’s comments. Maybe that’s why this enthusiastic post by Michelle Sutton about how she self-identifies as autistic confused me so much initially. I didn’t think that self-diagnosis was something was accepted or encouraged by any disability community.

How Would Michelle Sutton React to My Self-Identification Process?

To be fair, I’ve never really heard someone self-identify (the term that Sutton prefers to self-diagnosis) as a stroke survivor. For those that insist on self-identifying as being clinically depressed or having obsessive-compulsive disorder (two things with which doctors have diagnosed me), I tend to shift the conversation onto feelings and away from labels. Something about the person’s feelings made them self-identify that way, regardless of whether the self-identification is accurate or not. Or whether I believe it’s not. I’m often skeptical when people say things like, “I’m really depressed” or are convinced that they have OCD because they wash their hands a lot, but we can connect on feelings.

I’ve long figured, just from my own research and experience, that I have Attention Deficit Disorder. No one explored the possibility when I was a kid (I think likely because my grades were good). But as an adult, I can see ADD traits in myself, both now and when I was a kid:

  • Constantly losing things
  • Forgetting appointments
  • Getting and staying organized
  • A lot of problems with daytime sleepiness

The ADD assessment isn’t covered by Ontario’s health plan and is very expensive (not a reason I actively avoid trying to get a medical diagnosis, as Michelle Sutton does, but certainly a reason for why getting one isn’t possible right now.) I’ve told people that I suspect that I have ADD and will talk about the reasons why. But I don’t self-identify with it. It doesn’t feel right to me.

I can imagine why Michelle Sutton might tell me that I’m misguided, and I might talk with her about how her anti-psychiatry stance and “I’m being defiant” doesn’t work for me. And for me, ultimately, I’d rather have a doctor’s diagnosis, but I admit to bias – having worked in social services, I know that no diagnosis means no support services.

But even if it turns out that Michelle Sutton isn’t autistic beyond her self-identification, and I’m not suggesting she isn’t, if she’s found ways through her research and her connections with the autistic community to become more comfortable with all aspects of herself, and the community itself is supportive, who am I to judge?

I don’t talk with other people who have ADD…but I read some blogs on a regular basis, and I know that adopting some of the strategies that people use to stay organized have helped me to become more organized and less stressed out about losing things all the time. So even if I don’t have ADD, who’s harmed if I use the strategies and they make my life easier? No one that I can see.

I’ll have to do some more thinking about this. In the meantime, I’m glad that I read this blog of Michelle Sutton’s. At the very least it corrected some of my  erroneous thinking about the autistic community’s stance on self-diagnosis. I will put her blog on the list that will go on this site’s blogroll (when I get time to put it up!)

ETA: Seinfeld later backtracked on his comments and said that he wasn’t on the autism spectrum

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Utilitarian Thinking and Ableism

Two profoundly ableist articles had the disability community buzzing last week. Because of their subject matter, scope, and implications, it feels like many more articles were released, but it really is only two.

Content Note: Discrimination, Infanticide, Rape, Rape Culture, Systemic Ableism

"Ableism" written in white block letters on a brick wall. Key word: Peter Singer

Image Description: “Ableism” in white, block letters across a brick wall.

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The first article discusses ethicist Athur Caplan’s argument for a blanket policy that organ transplants not be granted when people have “disabilities that impair you so that you cannot have any quality of life.” He used being in a “permanent vegetative state” as an example, but conceded later that people with Down Syndrome should be eligible for transplants because “they enjoy life,” and “they contribute to their families, and their families enjoy having them.”

Well, that’s very gracious of him.

What I do like about Arthur Caplan’s article is that, while he does take a stance on his position with which I’m uncomfortable, he also puts out a call for dialogue about where the line at which organ transplant should cease to be granted (and while disabled people aren’t mentioned specifically, he does recommend that disability groups and the “transplant community” be involved), and a fairly comprehensive list of talking points. I think that disabled people and their advocates have plenty of talking points to add, but I’m going to get to that.

I think that this was one of the most important talking points on his list, from a paper by SD Halpern and D Goldberg that recently appeared in the New England Journal of Medicine: “Some healthcare professionals contend that cognitive function should not be a basis for allocating organs because it allows healthcare providers to decide that some lives are more valuable than others.” We know from the organ transplant denial cases involving Amelia RiveraPaul Korby, and Lily Parra that this is already happening.

I want to move on to the next article and come back to this one.

Peter Singer, Disabled People and Rape

The other article that grabbed the disability community’s attention this week was about philosopher Peter Singer’s recent editorial in the New York Times about the Anna Stubblefield case. Anna Stubblefield was a professor at Rutgers University when she had sex with a disabled student, D.J., and was charged with rape. She was convicted in 2015.

Nathan Robinson’s “Current Affairs” article about Peter Singer’s editorial is very good and should be read in whole. It shows how Peter Singer actually argues that in the court proceedings for the Anna Stubblefield case, D.J. was treated in an unfair and ableist manner. Writer Astra Taylor interviewed a disabled woman who was in the courtroom during the trial and who absolutely agrees with Peter Singer.

Robinson’s article doesn’t explain, however, why Peter Singer then couldn’t leave well enough alone and suggest that if a person is intellectually disabled to the point where they don’t understand consent, they can’t withhold it, and therefore they’d presumably enjoy sex whether it was forcible or not. D.J. couldn’t speak, but even if they presumed an intellectual disability, Peter Singer posits, he must have liked the sex because he wasn’t struggling.

It reminds me of the 2014 case in Georgia where Judge Christopher McFadden overturned the “Guilty” conviction for a man that raped a woman with Down Syndrome three times in 12 hours because she didn’t “act enough like a victim.”

As Robinson says:

“The New York Times therefore just published a philosophical defense of raping disabled people, and Peter Singer has — somehow — reached a new low on disability issues. (Actually, to be precise, an argument that it’s not clear what the harm is in raping disabled people, along with the implication that non-consensual sex acts against physically and mentally incapacitated people aren’t actually rape anyway if the victims do not know what consent is.)”

Peter Singer’s argument is disgusting, but not unexpected. He has in the past:

  • Debated whether it might be moral to kill disabled babies, and decided that in some cases it might be immoral to let them live.
  • Said he couldn’t raise a child with Down Syndrome because it wouldn’t make him “happy” not to raise someone that would be his “equal”.
  • Suggested that the lives of intellectually disabled people are worth less than those of non-disabled people.

Peter Singer is a utilitarian philosopher. It’s important to note that, not just because of the reasons (outlined by Robinson in his article) that utilitarian thought just doesn’t work well when you use it to discuss people, but also because it makes so many damn assumptions.

And we all know how much I love those.

Utilitarian Thought and Assumptions

Let’s go back to Arthur Caplan’s article for a moment.

Because there aren’t nearly enough donated organs to meet the demand for them, the approach to how people get them has always been somewhat utilitarian, to make sure that they go to people who need them the most, who will get the most use out of them, and who will follow the post-transplant regimen properly. It’s unfortunate, but difficult decisions need to be made when allocating scarce resources.

However, there’s an assumption at the foundation of Arthur Caplan’s argument that intellectually disabled people are in a different class than non-disabled people. Not only should their suitability depend on the practical criteria outlined above, but also on a determination that it’s worth keeping them alive to begin with: Do they “enjoy life”? Do they “contribute to their families”? Do their families “enjoy having them?”

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

If you could go along with Arthur Caplan’s reasoning and (apparently) believe that those criteria are even remotely fair to propose, how would we measure how well they’re being met? What evidence of being “enjoying life” would a transplant team be willing to consider? Who does a person have to make “happy” to be considered? What barriers to potentially enjoying life (or to expressing that enjoyment?) should be taken into consideration? What does it mean, to “contribute to a family”? Does family have to be biological, or could it be friends? Should those two types of families be weighed differently, and how? What about people who, through no fault of their own, have seen little or nothing of their families and haven’t had the chance to make that many friends (like those that have been instititionalized for most of their lives)?

Is it right to assume that, in the absence of information from the person, that just because they can’t have what a non-disabled person considers a good quality of life, that they’re unhappy and wouldn’t want their life prolonged by an organ transplant?

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

Peter Singer assumes that there’s no harm when an intellectually disabled person who doesn’t understand consent and doesn’t struggle is raped. He can’t know that. He can’t read minds. He assumes that a low IQ = no inner life. As a bioethicist, he should know better. His assumption that everyone responds to rape by struggling is easily refuted. I hope that by now someone’s made him aware of just how ignorant he sounded.

I’m willing to believe that Arthur Caplan actually wants to do some good, even if he’s misguided, but I suspect that Peter Singer is really just an ableist fuck who tries to use ethics to justify his positions. And I’m sorry that the New York Times saw fit to print his tripe without a balancing article correcting his assumption about how rape could affect an intellectually disabled person, and that advised that lack of consent doesn’t imply consent. Don’t have sex with someone if you don’t have their consent, period.

Bottom Line

As icky as these articles are, I’m not all that shocked by them.

I wish I was.

It’s just not a shock anymore to that these attitudes like these are still out there. It’s disheartening, though, to always come up as the option that’s not as preferable in these utilitarian reasonings, especially when the ableism is so obvious and especially when it affects resource allocation and safety on even as a hypothetical.

True equality still seems a long way off.

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“Star Trek Beyond” Writers Make Sulu Gay Despite George Takei’s Objections

So there’s an interesting debate going on about the new Star Trek movie, “Star Trek Beyond”. The movie’s writers and series original George Takei are disagreeing about how the Hikaru Sulu character is portrayed, and fans are clearly divided on it. I wasn’t sure how I felt about it myself, at first.

But I know now what’s made me so uncomfortable and why.

Content Note:  Nothing for Us Without Us, Racism, Homophobia

George Takei publicity shot - Asian man in his 70s, dressed in a blue suit and blue dress shirt, smiles at camera and makes Star Trek "Live Long and Prosper" sign with his right hand. Keyword: George Takei

Image Description: George Takei publicity shot – Asian man in his 70s, dressed in a blue suit and blue dress shirt, smiles at camera and makes Star Trek “Live Long and Prosper” sign with his right hand.

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About the Original “Star Trek”

The original “Star Trek” series only ran for three seasons, but it was remarkably progressive on several front. The Lieutentant  Nyota Uhara character, played by black actress Michelle Nichols, was not only the first black major character on a network series, but was part of the command crew on the Enterprise’s bridge – black, a woman, and fourth in command of the ship. When she was considering leaving the show, Dr. Martin Luther King Jr. told her that she had to stay, saying, “For the first time, we are being seen the world over as we should be seen.” The Uhura character was also part of the first interracial kiss on television, when she kissed Captain Kirk in the “Plato’s Bridge” episode.

So the show literally explored new frontiers. But sexual preference wasn’t one of them, and it was ultimately because “Plato’s Bridge” and the kiss were so poorly received; Roddenberry supported LGBTQ equality, but felt he had reached the line of what the American public was ready to accept from network television, as he discussed with George Takei (not openly gay until 2005) at the time.

The writers of “Star Trek Beyond”. in the name of diversity and as an homage to George Takei as “a sci-fi icon and beloved LGBT activist” have made Sulu’s character gay in this reboot of the original series. And George Takei’s reaction was unexpected:

“Except Takei wasn’t overjoyed. He had never asked for Sulu to be gay. In fact, he’d much prefer that he stay straight. “I’m delighted that there’s a gay character,” he tells The Hollywood Reporter. “Unfortunately, it’s a twisting of Gene’s creation, to which he put in so much thought. I think it’s really unfortunate.”

Takei explains that Roddenberry was exhaustive in conceiving his Star Trek characters. (The name Sulu, for example, was based on the Sulu Sea off the coast of the Philippines, so as to render his Asian nationality indeterminate.) And Roddenberry had always envisioned Sulu as heterosexual.”

Takei wondered why a new character that was gay wasn’t introduced, instead of making his character gay, and after a discussion with John Cho (who plays Sulu in “Star Trek Beyond”) and director Justin Lin, and an email from Simon Pegg (one of the wo-writers and the actor protraying Head Engineer Montgomery “Scotty” Scott) was under the impression that the creative team had decided to change course and take this route:

“‘I really tried to work with these people when at long last the issue of gay equality was going to be addressed,” Takei says. “I thought after that conversation with Justin that was going to happen. Months later, when I got that email from Simon Pegg, I was kind of confused. He thinks I’m a great guy? Wonderful. But what was the point of that letter? I interpreted that as my words having been heard.'”

Simon Pegg was so surprised by George Takei’s reaction to making Sulu gay in “Star Trek Beyond” that he felt moved to approach the media and express with his disagreement with Takei’s criticism. His points included:

  • Concerns about tokenism
  • Sulu’s sexual preference would be another aspect of a character of a that the audience already knows, not *the* defining aspect of a brand-new character
  • Concerns about timeline issues – “…the audience would infer that there has been an LGBT presence in the Trek Universe from the beginning (at least in the Kelvin timeline), that a gay hero isn’t something new or strange. It’s also important to note that at no point do we suggest that our Sulu was ever closeted, why would he need to be? It’s just hasn’t come up before.”
  • Since the Roddenberry’s decision not to explore sexual orientation in the original show was due to the time in history, and not an artistic one, it’s appropriate to do so now.
  • The decision shows that there are LGBTQ people everywhere – through time and across timelines, and it sends a positive message.

The thing is, from what I’ve read of the way that George Takei responded to the decision, I don’t think that he disagrees with most of this. All media accounts indicate that he’s was happy to include a gay character in the movie. He just didn’t want it to be his character, who he played as  heterosexual despite the fact that he’s a gay man, for a number of reasons besides the ones cited earlier:

  • He doesn’t believe that a gay man in the 23rd century would ever be “closeted”, the way he was in the original series. The Hollywood reporter notes that this creates some timeline issues, and I don’t understand the reasoning – it apparently touches on issues of the reboot’s timing in relation to the original story’s, and I didn’t realize that there was an issue here. I thought that the reboot was simply a re-imagining of the original series? Maybe someone can explain this to me.
  • He felt it would be better for the film’s gay character to have an acknowledged history of being gay.
  • This year is the 50th anniversary of “Star Trek” and Takei feels that this movie should honour Roddenberry’s original vision

This debate, in the large sense, sounds familiar to me, and I don’t like it.

Thoughts on George Takei, Sulu, Acting and Being Heard

I’m an actress. Not recently – it’s been quite some time since I’ve been on the stage. And I never played a part for as fraction as long a time as George Takei did Sulu, so I can only imagine how he must have felt about that character after all the development, the rehearsing, and the hours of shooting. I got attached to my characters after playing them for only very short runs on a stage in front of a small audience. Sulu was the character that launched and drove George Takei’s career, that made him an internationally-known name – he’s played Sulu for long periods off-and-on for 50 years.

And then some straight people (admittedly it’s an assumption that John Cho and Simon Pegg are straight, but they are both married to women and nothing in the media suggests that they are gay) come along and tell Takei that they’d like to change something major about the character.  As an homage, they say. They’d change an element of Sulu’s character that is very personal and life-defining for anyone, especially so for Takei given his personal life experience.

I would have said “I’d prefer that you didn’t,” as well.  And it’s not as if George Takei wasn’t open to the idea of a gay character in the movie and didn’t offer some thoughts on what he, as an original cast member and a gay man, would prefer to see.

But the writers, who weren’t even born when the original “Star Trek” aired, decided that they knew better than George Takei about:

  • The original “Star Trek” and Roddenberry’s vision
  • George Takei’s discussions with Roddenberry about addressing issues around sexual preference on the show
  • George Takei’s experience developing and playing the Sulu character
  • George Takei’s experiences as both a closeted and openly gay actor in Hollywood over decades

They decided that the input of George Takei,  who’s lived several types of experiences related to Sulu and his development and portrayal over 5 decades, wasn’t valuable given the narrative that they wanted to push (as straight people who weren’t involved with the original show at all) so they disregarded what Takei said.

And expected that he’d be honoured by it.

George Takei said himelf, “I interpreted that as my words having been heard,” but they obviously weren’t.

Members of the disability community, does any of this sound familiar?

And obviously George Takei might not feel these things about the whole business. These are just things that struck me, and made me think, “Well, all of that sounds very invalidating.” That’s through my filter – I don’t presume to know how George Takei feels, I can only speculate on how I’d feel in the situation, knowing that this sort of experience is a common one for disabled people – decisions about the things that are important to us get made without our input, and even when we’re asked we often end up feeling unheard.

Again, my filter – you might not see it this way, but if you’re not disabled then we’ve got some different life experiences, and I might not pick up on some things that you pick up on…

Bottom Line

I love the original “Star Trek”, I’ve enjoyed this movie reboot of the story, I’m all for diversity on the big screen and I’m thrilled to see the “Star Trek” franchise continue to push the limits.

I’m just a little disappointed by how this particular issue played out. How about you?

 

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Attawapiskat Needs Help

The community of Attawaspikat in Ontario, Canada, is in a state of emergency. Since September 2015, over 100 Indigenous people have attempted suicide, one of them just 11 years old. Eleven of those occurred in the early hours of Sunday, April 10, 2016.

The suicide attempts have put a chronically troubled community in the news once again.

Content Note: Suicide, Suicide Wave, Racism, Residential Schools, Intergenerational Trauma, Politics, Poverty

Stretched leather sign against blue sign says "Wacheeya Welcome to Attawapiskat First Nation". There is a silhouette of a howling wolf on the sign. Keyword: Attawapiskat

Image Description: Stretched leather sign against blue sign says “Wacheeya Welcome to Attawapiskat First Nation”. There is a silhouette of a howling wolf on the sign.

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Canada’s Indigenous peoples have struggled with significantly increased suicide rates when compared to the non-Indigenous population for quite some time.  The Guardian reported in an article about Attawapiskat’s current suicide crisis:

“Across the country, suicides and self-inflicted injuries rank as the leading cause of death for First Nations people younger than 44. For First Nations youth, statistics are even more bleak: suicide rates for young First Nation males are 10 times higher than for non-indigenous male youths. For young First Nations women, the suicide rate climbs to a staggering 21 times that of their non-indigenous counterparts.”

This isn’t the first suicide wave in Attawapiskat or in Indigenous communities like it, and it certainly won’t be the last if the government’s response is to fly a bunch of crisis workers in for just 30 days. Certainly not in Attawapiskat, where the people are living in 3rd world conditions.

Life in Attawapiskat

In 2011, there was a state of emergency declared in Attawapiskat not for a suicide wave, but for a lack of housing.  When politicians paid a visit to Attawapiskat in November of 2011, they found families living homes full of black mold without electricity, plumbing or heat. Residents burned fires in half-barrels to keep themselves warm – a considerable safety risk, especially considering the overcrowded conditions:

“…upwards of 20 people living in three- and four-bedroom homes, where each bedroom housed entire large families.”

Trailers that were donated as temporary shelters by the nearby community of DeBeers in 2009 had become permanent dwellings.  People lived in tents and sheds, and there were hundreds of people with no homes at all. Read more here about Attawpiskat’s housing crisis in 2011 and more here about the crisis at the end of 2015.

After seeing the state of the community, Ontario’s Ministry of Indian and Northern Affairs promised to retrofit 15 abandoned houses to make them livable, but Charlie Angus (Member of Parliament at the time) said that the money the government was making available wouldn’t allow that. “If these conditions were faced by tenants anywhere in Southern Ontario there would be charges laid against the landlord, who in this case is the federal government ,” Angus told The Timmins Press.

The legacy of substandard living conditions in Attawpiskat also includes:

There are more reasons why Attawpiskat finds itself in the situation it’s in. It’s “up North” and isolated. Unemployment and poverty rates are high. Its supplies must be brought in, and people in medical emergency must go to larger communities. The winters are dark and very cold. Writer Joseph Boyden, in a recent article in Maclean’s Magazine, talks about how, on his first visit to Attawapiskat, he considered smuggling in some alcohol to help keep him warm, breaking the community’s “no alcohol” rule.

Intergenerational Trauma and Residential Schools

In the same article, Boyden also talks about the  idea of intergenerational trauma and its link to Indigenous communities  like Attawapiskat and Canada’s indigenous peoples in general, focusing on the brutal 140-year history of Canada’s residential school system. These schools housed 150,000 indigenous children ripped from their families.

I know the basics about the residential schools. I’ve heard horrible stories of abuse, similar to the ones that I heard went on in Ontario’s institutions for intellectually disabled. I knew that, like the in the institutions, the students that died in the residential schools were buried in unmarked graves. I remember  hearing a story in a CBC radio documentary about a young girl’s experience in a residential school that horrifies me to this day, left me reeling when I thought I could no longer be shocked. I can’t talk about it.

Boyden talks about the worst memories of two of his friends who were residential schools (the last one only closed in 1996): one talked about being dragged out of bed in the middle of night to be raped repeatedly, and one missed the experience of loving physical contact as she was growing up – hugs from her parents.

I didn’t know these things about the residential schools, which I read in Boyden’s article:

  • One of the central architects of the schools, Duncan Campbell Scott, repeatedly stated that they were designed with the intention of “getting rid of the Indian problem” and used the phrase “the final solution” decades before Hitler did, in reference to the schools.
  • Apartheid was designed after a South African delegation visited Canada and viewed the residential school and reservation system.

“You can’t attempt cultural genocide for 140 years, for seven generations…and not expect some very real fallout from that. Attawapiskat is a brutal example.” writes Boyden.

Ontario Regional Chief Isadore Day agrees with Boyden:

“The ills plaguing aboriginal Canadians can be traced back to the Indian Act of 1876, which is marking its 140th anniversary…The act, which effectively transferred all decisions affecting First Nations to officials in Ottawa, set the stage for decades of turmoil, including residential schools. Those experiences are at the heart of issues that include addiction, poor health and unemployment.”

Solutions for Attawapiskat

Boyden believes that education for the children and youth of Attawapiskat and other reserve communities as central to the strategy that will save them. Not the education that the Indigenous children and youth currently receive, but one that is:

  • Funded to the same level as that of non-Indigenous children and youth receiving their education in schools off-reserve.
  • Grounded in a curriculum that builds not only academic skill but cultural identity, building self-esteem through “a pride in self and community.”

Attawapiskat has a high school. In 2012 the drop-out rate was more than 50%, and some students, like education advocates Shannen and Serena Koostachin, leave the community to pursue secondary education. Today Attawapiskat has an elementary school, but elementary students were educated in portables for 15 years after the former elementary school closed in 2000: ” Both soil and groundwater showed evidence of benzene, ethylbenzene, toluene, xylenes and TPH (total petroleum hydrocarbons from gas and diesel) above acceptable levels for human health. Later, construction consultants checking the building also found five species of mould in classrooms and corridors.” Read more about the contaminated school, built in 1976.

In 2008, Minister of Indian and Northern Affairs Canada Chuck Strahl announced that Ottawa would not fund a new elementary school. He later relented, and construction began on a new elementary school in 2014, but not without activism on a national scale from Shannen Koostachin. She was killed in a car accident at age 15. In this video, Shannon and Serena address the Ontario Labour Convention in 2009:

Boydon writes:

“Let’s first agree to begin with actually investing just as much in our First Nations, Inuit and Metis youth as we do in every other group of youth across this country. It is simple logic. If there’s one thing I know as deeply in me as I know anything, I too would have been one of these brutal suicide statistics we hear about far too often, if it hadn’t been for the resources available to me to continue my own education in its different forms. This is a right for all youth in our country, not just those who happen to live in more urban places.”

Isn’t it a beautiful idea, that education is the right of all children in our country? That every child is worthy of the investment of education dollars to assist them to reach their full potential? That children should be encouraged to take pride in self and the community of others like them, even when society tells them otherwise?

Where have we heard this before?

Attawapiskat, Oppression and Parallel Paths

It’s interesting to see how even though there are specific experiences of oppression that members of different groups will never understand, there’s a universality behind the experiences that binds what can be very different groups together. Former Prime Minister Jean Chretien said recently, in response to Attawapiskat’s turmoil, that it would be easier to help if the residents just moved further south (much easier than it sounds, given that Attawpiskat is accessible only by ice road and by air), and in his words I heard:

  • “It would be much easier if you learned to communicate more like non-autistic people”
  • “It would be much easier if you got a cochlear implant”
  • “It would be much easier if you worked harder not to be so reliant on your wheelchair.”

“It would be much easier for us to help you if you would just become more like us.”

That’s unacceptable. True support isn’t contingent isn’t contingent on giving up self-identity, which for the people of Attawaspikat is tied to the North and its land. True support is about meeting people where they are, not where we want them to be.

Attawapiskat’s story pulls at me because what’s happening there should not be happening in Canada, the politicians have known about it for a long time, and it seems like no one wants to help. But something else grabs me. There’s a universality to the experience of oppression, even when the specifics of the oppression are very different between groups, and in the stories of other oppressed groups in Canada is Attawapiskat’s story – people who want the rights, freedoms and opportunities granted to all Canadians, struggling to live in the face of almost insurmountable barriers.

The difference right now between the Indigenous people of Attawapiskat and other oppressed peoples in Canada is that while other groups are asking for help, Attawapiskat is screaming for it, and the bottom line is that it’s not right to ignore the kind of hopelessness and suffering that causes 5% of any community’s population to attempt suicide in less than a year.

We need to insist that our politicians do the right thing, fellow Canadians. Enough is enough.

 

 

 

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Zika and the Problem of Conflicting “Advocate Hats”

A friend sent me a link on the weekend to an article about from a Conservative blog that he likes, and it really got me thinking.

Content Warning: Abortion, Ableism, Infant Illness

Zika concept graphic. A globe with a mosquito sitting on it, and the word "zika" in front of it in red block letters. Keyword: Zika

Image Description: Zika concept graphic. A globe with a mosquito sitting on it, and the word “zika” in front of it in red block letters.

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The article in question, The UN Wants to Battle the Zika Virus By Killing More Babies, is about the UN’s response to the Zika crisis in Centre and South America, in the face of encouragement by 5 of the countries in which Zika has emerged that women delay pregnancy by as much as two years. Since pregnancies tend to be unplanned in these countries, abortion legal only in certain circumstances (Colombia) or outright illegal (El Salvador) and birth control difficult to get, the UN’s recommendation is that if the governments really want women not to have babies, they need to rethink their stance on legal, accessible abortion, birth control, and sexual education.

My friend said,

“I suppose that you’re outraged by these ableist strategies?”

So I went off on a tare about my abortion beliefs, talking about how every woman should have access to sexual education, birth control, and abortion, and how if a woman chooses to have an abortion because the baby is disabled, it’s none of my business and not my place to judge. I also went on a bit about how if we want to talk about ableism and and abortion, maybe American pro-lifers could get as worked up about how it goes on in their own backyard every day and do something constructive to stop the circumstances that cause women to consider it instead of just talking about a reality that they don’t like. I finished with a bit of a rant about how if they were really concerned about the abortion of Zika-affected fetuses in Central and South America, they could either start adopting Zika-affected babies from the region so that they’re not aborted or they could start giving money toward research for a cure for Zika.

And he emailed back, “So I was wrong?”

And I emailed back,”It’s ableist as hell and it makes me sad.”

Firstly, because the link between Zika and microcephaly is still disputed. However, even with link that’s still not been proven solid, what’s strong enough to prompt the UN to finally recommend changes to women’s’ health policy that needed to be made anyway?

The fear of having a disabled child.

Zika and the Importance of Reproductive Options for Women

Of course, this conservative blog had more than a bit of pro-life spin to it. No one has suggested killing Zika-affected babies, but rather making reproductive options (not just abortion) more accessible in countries where Zika is an issue (same thing to many pro-life people, I realize, but there’s a distinction to me as a pro-choice person, and I’m not interested in arguing that here.) This was something that needed to be done anyway. All women should have access to reproductive information and options (my opinion).

And part of that, for me, is that it’s none of my business why a woman aborts her baby. So even if a woman’s reason is ableist as hell, there’s no reason that I should know (or want to know) unless she wanted me to. I do believe that abortion, even for ableist reasons, needs to be made and kept legal, available, accessible, for all women.

This is has been a tough place to get to. Some days it’s hard to stay there. It’s hard to sort out my feelings about abortion when I’m both an advocate for women’s reproductive rights and someone who intensely dislikes ableism. I think that some people can ask whether someone can have both orientations. Most days I think it’s possible. Some days it’s difficult.

Sometimes my mind my mind starts to fight with itself when I hear things like things from Paula Avila-Guillen of the US Centre for Reproductive Rights, speaking of Central and South America to The Guardian:

“In many rural areas men and women do not have easy access to contraceptives and many pregnancies, especially in teens, are the product of sexual violence and abuse,”

My fists clench as I  think about how people everywhere need good sexual education, and access to birth control and reproduction options should have the options, including abortion. And yes, it’s especially important for women living in countries where the medical community has seen enough of Zika to declare its belief that the virus  and microcephaly in infants are linked, where pregnancy can be difficult to avoid and where there are few if any no services for raising disabled children deserve to know, in light of these realities, about what Zika might do to a fetus. I’ve been to South America. I know that there are few if any government supports for disabled people and loved ones that care for them. I remember vividly seeing homeless people on the streets, legs paralyzed with no wheelchair, dragging themselves around as they begged for money.

But it should have happened long ago. The UN’s recommendation to these countries that governments become more open to the idea of improving reproductive rights for women should have come a long time ago, says the women’s rights advocate in me. That it’s come about because of the suspicion that Zika will cause disability in infants is ableism, pure and simple, says the disability advocate in me, who wishes that all lives and life experiences were valued equally and that all disabled people everywhere had the supports that they needed at all stages of

I believe that disabled babies deserve a chance too, which sounds like something the pro-life movement would like.

But I’m not pro-life, as much as I sound like it sometimes. And the UN has no monopoly on ableism.

Zika and Abortion Specifically

As of Feb 3, there have been 35 cases of Zika in the US, all of them caused by exposure to infected mosquitoes through travel. No pregnant women have been infected.  There’s also some evidence to support the idea that Zika may be sexually transmitted.

A Zika-infected baby born with microcephaly in North America would theoretically have a better chance at a fulfilling life in a country like the United States or Canada, where more services are available (not enough, but more) than one born in Central or South America.

But should a fetus be diagnosed with Zika in the US, how welcome would it be? I found these comments at the end of only 2 articles about Zika:

  • EXCUSE ME???? What is unethical – and in fact IMMORAL – is to knowingly bring a severely mentally and physically disabled child into a world of SEVEN BILLION PEOPLE where we are RUNNING OUT OF EVERYTHING. Good God. Why is this even a question?”
  • “My unborn deserved to live without stigma, stares, and the ability to be productive and not yelp and drool, and not be a 19 year old that had to have changed diapers, who could get married and have a family, pay ball, run……so I decided that termination was best for the both of us. I don’t regret that decision at all.”
  • “Why would any woman knowingly allow a severely deformed-disabled child to be born? Would SHE want to be born in that condition?”

I hate comments like those. And yet, as someone who believes in a woman’s right to have an abortion, I would not say to the woman in the second comment, “Well, your reasons for having an abortion were wrong.” That’s not my right.

And for the record, I do share the concerns that women have brought up about Zika-infected fetuses in the US especially: that lawmakers will try to force women will to carry to term against their will without adding services to assist with raising them, that they’ll become another way to shame women (“You shouldn’t have traveled to that area”, “you should have been more careful with birth control”, “you shouldn’t be having sex right now”), and that they’ll be used to in general to chip away at the right to legal abortion in areas where it’s particularly contentious.

I will always fight for a woman’s right to have an abortion, regardless of her reason.

That doesn’t mean that I can’t be sad about the reason, because ableism makes me sad and angry.

There’s conflict. But where isn’t there conflict, right?

More about this later, probably.

 

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Thinking About Disability – Getting Out of Bataclan Concert Hall

Like everyone, my thoughts have been on the attacks in Paris and the friends and families of the people who died. As others have observed, this feels like a game-changer, and it makes me feel…anxious, and sad. This isn’t same world, even, that I went to university in, and I wonder what it will look like by the time my two nieces and my nephew are fully grown.

I inevitably end up thinking, when something like this happens, about disabled people who may have been involved.

Content Warning: Terrorism, Paris Shootings, Aurora Movie Theatre Shootings, Fire Emergency

A picture of the Eiffel Tower in Paris, France, with a retro effect, with a heart icon like the like buttons used in social networks to depict the idea of liking the picture. Keyword: Bataclan Concert Hall

Image Description: A picture of the Eiffel Tower in Paris, France, with a retro effect, with a heart icon like the like buttons used in social networks to depict the idea of liking the picture.

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In the car last Saturday,  my father and I listened to a CBC radio program where the host interviewed someone who was in Bataclan Concert Hall when the shootings began talk about what he experienced as people rushed to get out, and as the surrounding area and Paris in general realized what was happening.

“I don’t know what I would have done,” I said to my father honestly, thinking at the time about where I would have gone once I’d gotten out of Bataclan Concert Hall and onto the street.

“Gotten out of the building,” he said.

Yes, okay, that’s a given. But I’ve since thought, would it have been that easy, as a disabled person?

Getting Out When You’re Disabled and People are Scared

I don’t know what the interior of the Bataclan Concert Hall looks like, so I’m making some assumptions. But, based on the layout of a typical concert hall, I think that I could probably have gotten out of Bataclan Concert Hall fairly easily at this point in my stroke rehabilitation, assuming best conditions given the circumstances. With my cane, I’m fairly stable and I can move surprisingly quickly.

Yes, I probably would have gotten outside. Assuming best conditions given the circumstances:

  • Assuming that in other peoples’ panic to get out I did not get knocked over
  • Assuming that it was a good day and I wasn’t feeling dizzy or otherwise unwell

But that certainly would not have been the case in previous years, and as much as I like to give people the benefit of the doubt, I do not trust that a large, panicked group of people trying to leave a concert hall would necessarily help out a stranger who had fallen.

Or assist a stranger in a wheelchair who perhaps couldn’t get to the wheelchair entrance/exit because that would mean heading in the direction of the shots.

Or assist someone with low vision who may not be able to move as quickly because he or she has to use a white cane.

Or find some other way of making sure that a disabled person that otherwise needs assistance during a situation like that gets it.

The instinct for self-preservation and the protection of loved ones kicks in. I get that.

I think it’s a complicated issue, because unless I’ve totally misunderstood the law, being in a venue like the Bataclan Concert Hall for an event doesn’t mean that the venue owner has the same amount of responsibility for your safety as would, say, the administration of the school that your child attends. Schools absolutely have a responsibility to make sure that all students, including disabled students, are made as safe as possible in the event of gunfire on school grounds, including going into lockdown mode – teachers can’t just leave because they’re scared for their own safety. I don’t know what employees did at the Bataclan Concert Hall, but I don’t imagine that many (if any) stayed out of duty to patron safety – why would they potentially risk their lives that way?

I get that.

(Please feel free to correct me if you’ve heard otherwise. There certainly are dramatic stories of employees risking their lives for no good reason to save others in a crisis.)

However, there are safety standards that all businesses must meet, and when they don’t and patron safety is affected because of it – they need to be held accountable. And while I’m not going to suggest that a comprehensive plan about what needs to be done in the event of terrorist attack needs to be Priority One for either entertainment venues like the Bataclan Concert Hall or the disabled people that visit those venues (because, after all, in the grand scheme of things these sorts of attacks are still extremely rare in the West) in light of the fact that the world *is* rapidly changing and threats keep moving closer and closer (have up already in a movie theatre, in fact, if you remember the shooting in Aurora, Colorado – not ISIS-related, but certainly shocking in its brutality) perhaps venue owner owners need to stop and reassess, in light of these latest attacks:

  • What are the possible things that could go wrong during a show, however remote?
  • What are our responsibilities to patrons, in terms of their safety?
  • Are we meeting those responsibilities for *all* of our patrons, at all times?
  • Why or why not?
  • If “no”, what needs to be done? What’s the plan to make the necessary changes?
  • Whether “yes” or “no”, how do we best communicate safety procedures to all patrons?

And I think that everyone, disabled or non-disabled, should be cognizant of variables that might make a sudden, safe exit from a public venue difficult, and have a general plan for dealing with it:

  • Limitations imposed by disability (slower movement) or by navigating a panicking crowd or a building that’s not accessible enough
  • Responsibility for others’ safety (babies, children, any other person/people who need/needs assistance)
  • A fear of something involved with any sort of emergency and/or a sudden exit that may getting out safely overwhelming or difficult to do. For example, if you know that you become overwhelmed in the face of fear and tend not take action because you can’t make a decision about what to do first, that could be a problem.

Disability, Specifically

I can see some people pointing out that the obvious solution to the issue of making sure that you can safely get out of a venue quickly if you’re a disabled person that’s perhaps going to need assistance is to go to events in venues like movie theatres or the Bataclan Concert Hall with a person that can assist you to leave safely in an emergency.  For an event like the Eagles of Death Metal concert in Bataclan Concert Hall, presumably most people were with at least one friend anyway.

But not necessarily. I’ve never gone to a concert alone, but I’ve certainly gone to movies and plays alone. I’ve got friends who can’t imagine doing that, but it’s never bothered me.

To those that make the “bring a friend” argument – that requires an assumption that everything that a disabled person needs to safely exit a venue in an emergency will be in working order – for example, that the emergency exit by the screen in the movie theatre has had snow cleared away from it sufficiently that the door will open. If the damn door won’t open, who cares whether a friend very carefully helped you wheel quickly to it?

As I said earlier, there needs to be a procedure, there need to be checks scheduled, and people need to be doing them.

Story Time

When I first moved into my apartment building, my name appeared on a list of people who weren’t to leave in a fire, because I couldn’t move very quickly – in all drills I was to wait for the fire department to come get me. A number of people in the building, especially elderly people on the upper floors, are to wait this way – they are evacuated from their balconies. This works because the building is constructed so that it’s very difficult for a fire to get out of the section in which it starts – a lot of thought went into protecting residents and making sure that they’re safe in their apartments for an extended period of time.

I don’t have a balcony, as I live on the ground floor. I now leave through the building’s front door by myself anyway, but I didn’t feel especially unsafe when I didn’t because I knew that there was a procedure and I saw by what happened during the fire drills that it worked. I trusted it.

But I don’t have that level of trust in movie theatres, or even concert venues. Sorry. If the manager of one (preferably more) of them is willing to show me an emergency evacuation plan for something like fire that includes procedures for ensuring that everything is set up so that all patrons are able to get out safely, including the schedule for how often it’s all checked to see that it runs smoothly, and evidence that people are checking it frequently…maybe I’ll change my mind.

Difficult Questions

It’s crossed my mind a couple of times since hearing about the Paris shootings that, for my part, if I’m worried about falling and losing valuable time in any sort of emergency in venues like movie theatres or concert halls like Bataclan Concert Hall , then maybe I shouldn’t be going to movies and plays alone.

That’s a hard pill to swallow, and the “victim-blaming” rhetoric of “It you don’t want this to happen, then you shouldn’t…” isn’t lost on me. I don’t like it and I’m not sure how to reconcile it as these threats, however statistically rare they are, require us to ask difficult questions about how we can make public places as safe as possible for everyone, and what role we all play in that.

It’s definitely something that I will continue to think about.

Thoughts and prayers are with the people of Paris.

 

 

 

 

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Disabled Parking Permits and the Dangers of Assumptions

This post is going to be preaching to the choir for most of the people who read this blog. Maybe you can pass the link along to someone who insists on making assumptions about people who park a vehicle with the disabled parking permit visible in the window, in a disabled parking spot.

Content Note: Ableism, assumptions, disability policing

Disabled parking tag with note that says "FAKER" attached to it. Keyword: disabled parking permit

Image Description: Disabled parking tag with note that says “FAKER” attached to it.

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My thoughts on this are spurred by a post that I shared on the Facebook page, by a woman with who parked in a disabled parking spot, using the disabled parking permit that had been issued to her, and came back to find a note attached to it that said “FAKER”.

A Brief Lesson About Disabled Parking Permits

In case anyone’s unclear on this, let’s go through when you can’t park in a disabled parking spot (Ontario Regulations):

When you don’t have a disabled parking permit displayed, and you’re going to be in the store for “just 5 minutes”

When you do have a permit displayed, and you’re going to be in the store for any amount of time and the person to whom the disabled parking permit was issued is not in the car.

When you do have a disabled parking permit, you’re going to be in the store for any amount of time, the person to whom the disabled parking permit was issued *is* in the car, but won’t be going into the store. If the disabled person is just going to sit in the car in the disabled parking spot, they’re taking up the spot and pushing out a disabled person that might actually intend to go into the store. It’s a misuse of the permit.

Here’s when you can park in a disabled parking spot: You are the disabled person to whom the permit was issued, or the person to whom the permit was issued is in the vehicle, and will be going into the store.

The Disabled Parking Permit and Assumptions

Abuse of the disabled parking permit is definitely annoying. When I see a car parked in a disabled parking spot, I check to see if there’s a permit displayed on the dashboard. But what’s even more annoying is when people:

  1. Make the assumption that a person who doesn’t “look disabled” enough to have a disabled parking permit assume that a person isn’t entitled to it and must be scamming the system.
  2. Take it upon themselves to police people who they assume aren’t “disabled” enough to have a disabled parking permit.

I don’t think that the average person understands that for many, many disabled people, a day where they walk around town doing errands or having lunch and an afternoon out with friends means three or four days of recovery where they have to use a wheelchair. Even after a decade of being able to walk without a cane inside, and even outside for short distances depending on the season and weather, a day of walking without my cane at the Toronto Zoo left me so exhausted that I was stunned.

It’d be easy to assume, catching a disabled person after a few days of rest and recovery, that perhaps the disabled permit on the dashboard isn’t necessary. Someone might assume that the person gets around that easily all the time, and become suspicious: How is that person disabled? Did he or she scam the system? The trouble with that assumption is that it doesn’t take into account that perhaps that person is so exhausted and in so much pain that the parking permit is vital.

The other trouble with that assumption is the second one that often flows from it, that having identified disability parking permit “fraud”, it’s okay for citizens to deal with it themselves.

Disabled Parking Permit “Fraud”: Citizens Policing Citizens

I don’t understand is how it’s anyone’s business, outside of the office that issues the disabled parking permit, whether a person is “deserving” of a permit or not. The assumption that I’d rather make is that the permit is on the car, someone thought they should have it, whether it looks to me at the moment like they should or not –

And it’s not my job to police people!

It’s not Joe Public’s job, either. It’s none of his business. And I’d really like to know where people got the idea that it was. The idea that disabled people should be required to prove to just anyone on the street on  demand whether they’re “disabled enough” to receive a service is particularly insidious ableism, and a real measuring stick of how far we *haven’t* come. When your typical person on the street still feels entitled to that sort of power over disabled people, that’s a real concern.

I remember writing something like that before, so I went back over my posts for the past year. I found what I was looking for in a post about Kanye West. He refused to continue singing unless everyone was standing up at a concert, and when some people in wheelchairs didn’t stand up (because they couldn’t) he sent staff to make sure that they couldn’t. I wrote:

“There are very few people to whom I have to prove that I’m disabled. They are service providers that need proof of disability so that I can start/keep receiving some sort of service. I’m not crazy about this, but it’s part of life, it’s fairly infrequent, and I deal with it. I do not have to prove that I’m disabled to a person on the street, another disabled person, or anyone else that I don’t want to.”

You don’t have to either. Spread the word.

Intellectually Disabled Adults and “Age-Appropriate” Interests

Well, 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.

Content Note:  Ableism, infantilization, double standardsArt supplies arranged to make a square - paints in tubes make up top of the square, with pencil crayons in a box underneath to complete the right side and half the lower lower side, and markers and crayons to make up rectangle to complete the square. Keyword: intellectually disabled adultsImage Description: Art supplies arranged to make a square – paints in tubes make up top of the square, with pencil crayons in a box underneath to complete the right side and half the lower lower side, and markers and crayons to make up rectangle to complete the square.

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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?

 

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