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

George Takei publicity shotSo 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.

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 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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Gathering My Thoughts

Yesterday I was checking Twitter all day, keeping up with how the story around the shooting of Alton Sterling in Baton Rouge was developing. And last night I was profoundly affected by the video of the shooting death of Philando Castile in front of his girlfriend and small child.

I know that as a white person, I will never truly understand how difficult these past two days have been for the black population of America, and I’m grappling with how to write how these events have affected me while being the most respectful and sensitive that I can to black people who are truly hurting.

It may take me some time to figure out how to do this…I may write about other things as I think about what I want to say…but know that I am trying to listen, and stay present, and learn, because I *am* privileged and sometimes I don’t know what I don’t know…

I am trying to work my way through some things that I need to, without making what happened about me.

I am really just trying to become the best person that I can in an ugly world where there aren’t many answers. I don’t always know how to do that, but I really do want to…let’s be patient with each other.

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Disabled Woman Beaten After Becoming Confused at TSA Checkpoint

 

A sign that says "Stop: Security Check" isolated over a white - Hannah Cohen

Image Description: A sign that says “Stop: Security Check” isolated over a white background

June 30th should have been a really great day for Hannah Cohen.

The 19-year-old woman was on her way home to Chattanooga, after having radiation treatments and surgery to remove a brain tumour at St. Jude Children’s Research Hospital in Memphis. According to the Associated Press, the treatment she received at St. Jude left her “limited in her ability to talk, walk, stand, see and hear”, but she was medically cleared to fly home with her mother.

While going through a security checkpoint at the Memphis International Airport, Hannah Cohen set off an alarm. The TSA agents and airport police manning the checkpoint wanted to do additional screening, but Hannah became confused and anxious. WREG Memphis reported:

“‘…she was reluctant — she didn’t understand what they were about to do,’ said her mother, Shirley Cohen.

Cohen said she tried to tell agents with the Transportation Security Administration that her 19-year-old daughter is partially deaf, blind in one eye, paralyzed and easily confused — but she said police kept her away from the security agents.

The confused and terrified young woman tried to run away, her mother said, ‘and agents violently took her to the ground…she’s trying to get away from them, but in the next instant, one of them had her down on the ground and hit her head on the floor,’ Cohen said. ‘There was blood everywhere.'”

Hannah Cohen and her family are suing the TSA, the Memphis Airport, and the Airport Police, alleging that she was discriminated against because of her disabilities and that there was a failure to provide proper accommodations for her during the screening.

TSA spokesperson Sari Koshetz said about the incident:

“Passengers can call ahead of time to learn more about the screening process for their particular needs or medical situation.”

Well, it’s good to know that they can call this line, not that they must. This is an important point, and it’s also important to remember that the TSA itself said “can” instead of “must”. It’s in line with information on the TSA website about the screening process for disabled passengers. The website explicitly says in the section devoted to each kind of disability that a TSA disability card or medical documentation can be presented to the TSA agent at the checkpoint and the disabled traveler can expect accommodation – nowhere does it say that prior arrangements have to be made.

That’s one important point. I think that there are three more to be made here:

Expectation of Accommodation

Forget that the TSA website lists what accommodations the agency can provide for a variety of disabilities without the requirement that disabled travelers call in advance of the travel date and discuss their needs – even if it didn’t, in a country that has had federal legislation in place for over 25 years requiring businesses (including government-funded services) to make the required accommodations so that disabled people can access their services, one would expect that TSA agents would be trained in how to deliver services in a fully accessible manner. As Kim Sauder said over at Crippled Scholar, disabled people should not be required to announce themselves in advance so that proper accommodation can be made available – it should just be available.

Granted, some people do have very specialized needs that require more accommodation than usual, and in those circumstances sometimes it is advisable to call a business ahead of time. However, that isn’t the issue here. Presumably, since Hannah Cohen has been making this trip to Memphis for treatment for 17 years, she and her mother presented either the TSA card or necessary documentation to explain the need for what must was likely already a checkpoint experience that required some level of accommodation; even if they didn’t, Hannah would have presented as someone with at least an obvious physical disability. It’s reasonable to expect that TSA agents have training in how to work with someone whose noncompliance is coming along with signs of confusion or overwhelm (particularly if there are signs of other disability or a caregiver with the person is telling them why) – the TSA website says that accommodation can be expected for (by name) Alzheimer’s, dementia, aphasia, brain injury, autism, and intellectual disability. Accommodations include, according to the website, not separating the person from traveling companion and opportunity to inform the TSA agent about the best way to approach and conduct the screening.

Once Hannah Cohen started to become anxious about additional screening, these accommodations were denied, escalating the situation and resulting in her assault, arrest, and a night in prison.

Nowhere on the website does it say, “The TSA may deny accommodation at its discretion.” Imagine the shitstorm if it did. It would be breaking the law.

What happened to Hannah Cohen was illegal as well as disgusting. Train your agents to do what you’re telling the public that you’ve trained them to do, TSA.

Accommodation, Exception, and Understanding

The TSA website is also careful to say that while it accommodates the needs of disabled people (this blogger disputes this), disabled people will still have to screened. Fair enough.

And Hannah Cohen did set off an alarm, so they wanted more information. Fair enough.

What’s *not* “fair enough”, and not even remotely productive from the TSA’s point of view, even if the agents haven’t been provided with the proper training, is their and airport police’s insistence on escalating a situation where a multiply disabled individual is obviously confused and agitated by the steps that need to happen next in the screening. Especially when there’s a caregiver there that the person trusts and that can assist with the process.

There’s no need for TSA agents to assume that every disabled person who goes through the checkpoint must be cognitively disabled because of the presence of the physical disabilities – long-time readers know that this is one of my pet peeves.

But in Hannah Cohen’s particular situation, there was also no need to assume, when her mother was there to verify, that her multiple disabilities didn’t mean that was perhaps also something that prevented her from understanding what was going on. It should be important to the TSA that passengers, disabled or non-disabled, understand the processes at checkpoints and why certain requests are made of them – not just to minimize anxiety for all passengers in transit (travel is stressful enough and *anyone* can lose their temper and become agitated when under enough stress), but because people have rights and responsibilities as airline travelers going through a checkpoint and need to understand them if the process is to move smoothly.

Even disabled people, TSA.

When I did rights training with intellectually disabled people, I used every tool that I could to help them to understand their rights and responsibilities. The TSA, trying to do their job by doing enhanced screening with Hannah Cohen, had a terrific tool at their disposal – not only could Hannah’s mother have acted as a calming influence in an unfamiliar situation, she could have been the person that helped to allay Hannah’s confusion about what was going on enough to get her to cooperate, give the agents what they wanted, and get the whole thing ended without incident.

But the airport police separated them, denying an accommodation that the TSA said it could provide and needlessly escalating an already stressful encounter. Congrats on a job well done, officers – look where it got you.

This Shouldn’t Have Happened to Hannah Cohen…or to Anyone

The media is outraged that this happened to a disabled teenager.

It should be outraged that this happened to anyone.

This “shoot first, ask questions later” mentality is sickening. Even if Hannah Cohen had been a non-disabled person, her only “crime” was that she refused to comply with a TSA request. They didn’t have proof that she was dangerous, or even had intention of doing anything illegal, but for that she was tackled and had her head bashed against the floor until her face was battered and bloodied. She was then arrested, dragged out of the airport, booked, and spent a night in prison.

The fact that Hannah Cohen is disabled adds another level of complexity to the story, but the ultimate message would be the same if she was non-disabled: This is not the way that *people* should be treated. Not disabled people. Not non-disabled people. Not anyone.

Shame on the TSA agents, the airport police, the Memphis police, and everyone involved in the events that put Hannah Cohen in jail on the night that she should have been celebrating the end of her cancer treatment.

Hannah Cohen is suing for $100 000. If I was her, I’d be asking for a hell of a lot more.

 

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“The Fundamentals of Caring”: Movie Review

"The Fundamentals of Caring" movie poster - a man and a young woman stand back-to-back, in profile, and another young man in a wheelchair sits in front of them, centred and facing the camera. So, this past weekend I watched “The Fundamentals of Caring” on Netflix, with more than a little trepidation (even though one of the stars is Paul Rudd, one of my favourite actors.)  This post contains major spoilers for that movie, so considered yourself warned.

I say “with more than a little trepidation” because Hollywood doesn’t tend to “get it” when it comes to movies about disabled people, and because The Guardian’s review of “The Fundamentals of Caring” savaged the movie – not specifically because of its portrayal of a disabled person, but because the film is conceptually tired and very predictable: quirky people bonding/learning about themselves/breaking out of maladaptive patterns and transforming their lives on some journey that involves a a road trip at some point, a la films like “Little Miss Sunshine” and “Garden State” (both, like “The Fundamentals of Caring”, films that debuted at Sundance.) It’s a dying genre, the review notes, and the films that currently represent it either have to have a lot of star power to get going, or leads with great chemistry (which Rudd and actor Craig Roberts, who plays disabled Trevor, have in spades).

The Guardian is right about these things. “The Fundamentals of Caring” is basically predictable, at least in some ways. I really liked “Little Miss Sunshine” (I don’t remember a lot about “Garden State”…Zack Braff, I think?) so I could live with the “life-changing road trip” trope. I actually liked the way it was used in “The Fundamentals of Caring”. But what I liked even better was the way that the movie dared to show a person (a young adult – Trevor has advanced Duchenne muscular dystrophy, uses a wheelchair, and requires a significant amount of assistance with activities of daily living) who’s really just an asshole. Not an irredeemable asshole, but the sort of smug, late-teen smart ass who thinks that faking that he’s choking on a bite of Slim Jim and scaring the shit out of his caregiver is hilarious. And it also dared to show a relationship where when the disabled person is an asshole, someone calls him on it.

That’s just refreshing. Because, despite what we’re told by movies and television and writing that calls disabled people angels and implies that they’re perpetually happy and joyous and “incapable of deception” (direct quote from a person in my town about a person with Down Syndrome), some disabled people are miserable to be around, and disability does not give them a free pass when it comes to treating other people miserably.

Let’s take this example between Trevor and and his new caregiver Ben (Rudd), where Trevor is deliberately trying to get under Ben’s skin.

Trevor: Who do you think would win in a fight to the death? Me? Or a bird?

(Ben stares at the TV, looking pained)

Trevor: How about me versus a lot of birds, but all the birds had muscular dystrophy?

Ben: I think a bunch of birds with muscular dystrophy are fucking you up.

We don’t expect disabled people to be assholes. We don’t expect non-disabled people in particular to dare to actually say something about it (because disabled people have it so hard already that non-disabled people should just overlook it if they’re impolite or mean, right?) The subversion of the expectations is both jarring and humourous, and carried out very nicely by Rudd and Roberts.

Not that “The Fundamentals of Caring” doesn’t have flaws besides being predictable.

Some Issues With “The Fundamentals of Caring”

Craig Roberts isn’t disabled, which sticks in the craw of most disability advocates (and rightly so). If you’ve never heard this argument and can’t see why this is upsetting, consider how offensive society would find it if a black character was played by a white actor in blackface, as Dr. Frances Ryan wrote in The Guardian after actor Eddie Redmayne won the Golden  Globe for his portrayal of Dr. Stephen Hawking in “The Theory of Everything”. Leading roles in movies are already at a premium for talented disabled actors, and they can’t even get them when they come along. It’s a much bigger issue than people think, and it gets barely any attention in the mainstream media. If you doubt me, think about the major movies featuring disabled characters, think about the actors who played the characters, and think about the awards they got:

  1. “Rainman” – Dustin Hoffman gets Best Actor Oscar for portrayal of autistic man
  2. “My Left Foot” – Daniel Day Lewis gets Best Actor Oscar for portrayal of man with cerebral palsy
  3. “A Beautiful Mind” – Russell Crowe gets Best Actor Golden Globe for portrayal of John Nash, a schizophrenic professor and economic theorist.
  4. “The Theory of Everything” – Eddie Redmayne gets Best Actor Golden Globe for portrayal of Stephen Hawking
  5. “Ray” – Jamie Foxx gets Best Actor Oscar for portrayal of Ray Charles

So, this is an issue.

Other issues include Ben’s caregiver technique. Granted, I don’t know the standards for lifts and transfers in the US.  But I was taught that safely lifting even a older child, say,  from a bed to another surface requires either two people or a mechanical lift, or you’re risking dropping the individual on the short term and back damage on the long term. It’s not totally clear what Trevor’s age is meant to be, but he doesn’t attend school, so presumably he’s at least 18 and fully grown – Ben should not be lifting him alone. Picky point? Maybe. But I wouldn’t want to be a wheelchair user in trouble somewhere and have someone assume that it’s okay to try to lift me unassisted because he or she saw it done easily in a movie.  It’s not safe.

Nor would I want people assuming that the solution to an accessibility issue is to have people push/pull a disabled person in their electric wheelchair up a flight of stairs.  That is absolutely not something to be modeled for comedic value.

And there were plot points that made me :headdesk:. We learn, once Ben approaches Trevor’s mother with the idea about the road trip to see the World’s Deepest Pit, that Trevor has never been more than an hour from his house. I truly almost cried.

But then I thought, “What a discussion-generator!”

Discussion Questions for “The Fundamentals of Caring

I don’t know if the people involved in “The Fundamentals of Caring” intended to pack it as chock-full of jumping off points for discussion as they did, but here are the ones that occurred to me as I watched:

  • Name some media stereotypes of disabled people in this movie, and some stereotypes of disabled people generally. How does Ben react to these stereotypes? The hitchhikers? Trevor’s family? Other characters?
  • Comment on Trevor’s mother. Is she ableist? Does she realize it? Why can’t she see that she’s ableist, or why does she continue to act in an ableist manner if she can see it?
  • Are there other ableist characters or examples of ableism in the movie? Is is deliberate?
  • Does Trevor have some internalized ableism? Why or why not? If so, what contributed to it? What contributed the most to it?
  • Comment on Trevor and the idea of dignity of risk. Who was the most scared of the idea of Trevor going on a road trip? Why do you think that was?
  • Comment on Trevor and the idea of self-determination. Even though it’s hard to deny that the trip would be good for Trevor, should he have been forced to go when he was obviously so uncomfortable with the idea?
  • Is Ben a good caregiver? Is the relationship appropriate?
  • What is the role of a professional caregiver?
  • How much training should professional caregivers have? What they should be paid per hour?
  • Should businesses that aren’t accessible be penalized in some way?
  • Is Trevor a positive portrayal of a disabled person? Why or why not?
  • Why do you suppose the title of the movie was changed from the that of the novel it was based on (“The Revised Fundamentals of Caregiving”)?

And, of course, you need not ask or answer any of these questions. If you can get past the genre (which apparently The Guardian couldn’t),  “The Fundamentals of Caring” is quite enjoyable. I was surprised at how genuinely funny I found it, how few moments of disability-related-“Oh my God that’s SO WRONG” moments there were, and how many times I went “Oh! Teachable moment!”

I enjoyed it more than I’ve enjoyed a movie about disability for quite some time.

“The Fundamentals of Caring” is currently streaming on Netflix.

Addendum: After reading this interview with the film’s writer-director, I’m amazed that “The Fundamentals of Caring” turned out as well as it did. Rob Burnett most emphatically doesn’t “get it”.

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The Problem with “Grace”

The words Election 2016 over the flag of the United States. - GraceSome of you may have seen David M. Perry’s recent article in “The Atlantic” that analyzes the disability stereotypes in “Grace”, the anti-Trump ad produced by the Priorities USA Super PAC for Hillary Clinton’s campaign. It’s a terrific article about how even when advocacy has the best of intentions, it can backfire.

I’ve been watching reactions to “Grace”. Non-disabled people see “Grace” as a slam-dunk, a powerhouse of an ad that’s going to go a long way toward hurting Trump:

The disability activists that Perry interviewed, all disabled themselves, weren’t so impressed with “Grace”:

Dominick Evans, Filmmaker: “It feels really exploitative to use this issue and speak about a disabled child and about disability and never include us in the discussion, at all.”

Alice Wong, Founder of the Disability Visibility Project and #CripTheVote: “…infantilization is [the] message that comes across in this ad. Unfortunately, infantilization of disabled adults is pretty commonplace in the media.”

Vilissa Thompson, Founder of Ramp Your Voice: “Disabled children’s images and stories are always used to evoke the sympathy feels among members in society.” She added that the images are almost always of white children.

Perry observes

“No matter how well intentioned campaigns may be, they may take a different approach than activists, even when they are working hard to court those groups. Activists want to move mainstream society to adopt new positions. Campaigns, and ad-makers at political-action groups, want to reach mainstream Americans where they are. Perhaps social change always requires activists to push politicians past their comfort zones.”

I don’t disagree with anything in the article. I added it to the Facebook page and have tweeted it several times precisely because I think it’s spot on. But I wanted to add some observations of my own about about “Grace”, based on watching Obama’s attitude toward disabled people.

I think that T’s argument about disabled children being used to manipulate emotions also applies to disabled adults – and that the Democrats as a group tend to use disabled adults for this purpose more than the Republicans do. I first noticed it at the 2012 Democratic Convention, when Gabby Giffords recited the Pledge of Allegiance.

Of course, it was more than Gabby Giffords’ disabilities that made that moment emotionally charged. It was one of her few public appearances since she was shot in 2011 (presumably an assassination attempt.) But did it help that a person that, through hope, hard work and a belief in herself (which is the way everyone succeeds in America, yes?) had “overcome” the disabilities acquired through a senseless shooting to the point where she could join her peers and colleagues during this history-making event, recited the Pledge of Allegiance, so central to both the history, present and future of everyone was there to do, in front of all of them?

You bet it did.

Making Us “Feel All the Feels”

I wrote at the time, in Gabby Giffords and Emotional Manipulation by the Democrats:

I didn’t see Gabby Giffords recite the Pledge of Allegiance, but the clip that I saw and the activity on my Twitter feed told me that people were certainly affected by it. People talked about her strength, her bravery, and how they were crying.

And even I had to admit that it was nice to see Gabby Giffords if for nothing else to see how far she’d come in her recovery. But I also wrote in my piece:

“If you really want to honour people like Gabby Giffords, who have the will to live as full a life as possible with disability (and there are many of us), put policies in place that allow us to, and that allow the people who care about us to assist us to. For all disabilities.”

I was thinking this way as well the second time I saw Obama trot out a disabled person to ramp up the emotional intensity, during the State of the Union address in 2014. Corey Remsberg was a veteran who’d done 10 tours of duty in Afghanistan – he certainly deserved the recognition that he got during the address, even if the way that Obama told his story reeked of inspiration porn (“Cory Remsburg never gives up, and he does not quit,” said Obama to the crowd of the way Remsburg regained his ability to walk and talk during 16 months in a rehabilitation centre after nearly being killed by a roadside bomb in Kandahar.)  I was even more angered by this display than I was by the one involving Gabby Giffords, because it was stunningly hypocritical. The US (and Canada, for that matter) loves to talk about how it supports its troops and takes care of them when they return from war, but we all know it’s not true – disabled US veterans are at the mercy of a VA system that isn’t even fully computerized, despite Obama identifying that as a priority for his administration, long wait times for services, and an uncertain future at the hands of the country that they put their lives on the line to protect.

It was one of the many reasons that I was disillusioned with that particular State of the Union address.

Oh, “Grace”…Call Me Cynical, But…

So, even hearing this time around from the Democrats that they’re considering disabled people in their campaign strategy, to the point when Hillary Clinton has even developed a plan to address the needs of autistic people and their families, I am skeptical, when I see ads like “Grace”, that they really “get it”. Disabled people are citizens and voters – I’m tired of us being used as props to rally the rest of the voting public. It doesn’t seem like politicians can get it through their heads (although through efforts like #CriptheVote I think that they’re starting to get it and will continue to see more clearly) that we’re a major voting demographic with *a lot* of power.

But we’re going to have to tell them when they don’t get it right.

Refuse to be a prop, American friends. You’re more than that, and people need to know it.

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On an unrelated note, as of June 11 I’ve been blogging for 5 years.

Thanks to all you for sticking this out with me. 🙂

 

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Hallee Sorenson is Autistic. Please Send her Birthday Cards.

Autism Spectrum word cloud on a white background. - Hallee SorensonSo a picture is making the social media rounds this week of a young autistic woman, Hallee Sorenson, eating cake alone  on her 18th birthday. I’m not going to repost it because I suspect that  it was posted and has made the rounds through the media without her permission. But the photo went viral because Hallee invited her class and other teens in the community to a bowling party to celebrate her birthday, and no one showed up.  No one even sent an RSVP.

There’s no disputing that it’s a sad story. The same thing happened to the daughter of a good friend of mine when she turned twelve. I wasn’t at the party, but when I heard about it I was furious. Livid. Growing up in my house, when we got invited to a kid’s birthday party and there weren’t prior plans for that day, we went – we’d been invited, and it was polite to go.  Even if we didn’t like the kid that much, we were expected to suck it up, because it was only a couple of hours and at least there would be cake and ice cream. However, the parties where the whole class was invited were done by the time I was ten, making way for small-group sleepovers and movie parties and eventually the more adult parties of high school. But we’ll get to that later.

I was not so livid about the failed birthday party that my friend’s kid experienced that I posted on Facebook about it and solicited cards to make her feel better. That never even occurred to me. But it did to Hallee Sorenson’s cousin Rebecca, who posted this, along with the picture of Hallee at her birthday party, on her Facebook page:

“Hallee is an amazing person-a person I am proud to be related to. She is also a person who just happens to have Autism. She has never let that small detail define who she is as a person-which is why I refuse to use it as something to describe her.

“She had been so excited to have a party with her friends. She wanted to go bowling, have fun, and eat cake and Ice Cream. Invitations went out to her classmates at school and to other friends in the area. Hallee sat at her party anxiously waiting for her friends to arrive so they could have fun….but Hallee’s friends would never arrive. Not a single one. Below is the picture of her celebrating alone – eating her birthday cake. My cousin is a beautiful young woman who will always have the mind of a child…so as you can imagine, she was heartbroken and beyond sad. She was hurt…”

Rebecca also wrote that Hallee “loves getting mail- this would be the best birthday gift she could ask for. If you could find it in your heart to take a few mins out of your day and send her a card, I would be forever greatful,” She included Hallee Sorenson’s mailing address.

I’ve discussed this story with a variety of people, and read many comments on the media coverage. The disabled people that I’ve seen comment on it have almost always reacted negatively, for a variety of reasons, and are talking about it mainly amongst themselves. I don’t see their comments on the media accounts, and there may be a good reason for that: when I see anyone’s public comments deviate from the narrative that soliciting cards from strangers over the internet to help lonely, autistic Hallee Sorenson feel loved and valued, they’re attacked.

“Congratulations. You’re a horrible person.” someone said in response to a comment suggesting that brought up some of the issues that disability advocates are raising.

Brace yourself, folks. I’m about to show what a horrible person I am.

Hallee Sorenson’s Party

Even though Hallee Sorenson may “always have the mind of a child”  (I could do an entire blog post on how unfair it is to assume what developmentally disabled people do/don’t understand and the dangers of treating them as “eternal children” on that basis, but I’m going to just note that these are issues and move on), she was legally an adult at 18. She should have had the opportunity to plan her own birthday party to the greatest extent possible. Apparently she did say that she wanted a bowling party, but then, in her own mother’s words (see video), “we went all out.”

What does that mean?

Who made the guest list for this party? If Hallee Sorenson was the one who said, “I want to invite my classmates and these other teenagers for bowling and cake,” someone should have said to her, “You can do that. Your choice. But 18-year-olds usually don’t go to cake and ice cream parties, and not everyone likes bowling. The people that you want to come may not come.” When my friends and I were eighteen, we had part-time jobs, family obligations, and homework to do during the day on the weekend so that we could go out on Saturday night and do more homework on Sunday night. I would have sent an RSVP to Hallee’s party if my my 18-year-old self had been invited, and I would have asked her about it on Monday when I saw her at school.  But would I have gone? Probably not.

Unless she was a friend with whom I habitually spent time and not just an acquaintance. But was the guest list actually made up of Hallee’s friends? Or was the goal to get as many people there as possible? Was that goal Hallee Sorenson’s or her mother’s?

Either way, Hallee Sorenson ended up with a party that eighteen-year-olds weren’t likely to attend – regardless of her disability, the party was somewhat set up to fail. But we’ve all experienced disappointment (even six-year-olds, if we must go with the idea that she’s processing events at that level of cognition), and it’s important that everyone learn to deal with disappointment and realize that life goes on. I had a shitty twentieth birthday. I didn’t get a story on CBS. I survived.

But I wasn’t disabled at the time.

Because Hallee Sorenson Is Disabled…

…it was okay to take an embarrassing story of how no one came to her birthday party and put it up Facebook, along with her photo and mailing address, without her permission.

It was okay for media outlets to pick up the story, use images of Hallee Sorenson (without her permission, it seems), and talk to everyone but her about how she felt about the birthday party.

Cards and presents from strangers are seen as an acceptable substitute for the validation that Hallee would get from real relationships with her peers.

Don’t get me wrong. I don’t doubt that Hallee Sorenson’s cousin had totally good intentions when she asked the world to send birthday cards. And what parent wouldn’t want to do something, anything, to erase the memory of a birthday party where no one showed up? But how would any of us feel if we found out that we got a mountain of birthday cards because a family member put up a Facebook post asking strangers to send them and the news picked up on it?

“She’s going to see that a lot of people want to be her friend and want to wish her well,” her cousin told CBS in a phone interview.

I totally wish Hallee Sorenson well, but I’m not sending a card. I’m sure that she’s a lovely young woman, but I’m not her friend, and me sending her a card doesn’t make me her friend.  Me sending her a card does not mean that I’ll do “friend” things like visit her or call her on the phone, that we’ll get together to do things that we find fun, that we’ll be there to talk to each other when things get rough. It doesn’t even mean that she’d get a card from me next year when this story is long gone from the public consciousness and people have forgotten it was in June that they saw the sad story about the “heartbroken” autistic girl in Bangor  and sent a card so that *they* would feel a little less sad about what happened to her.  The idea of her getting thousands of cards believing that these people will be her friends makes me feel sadder than the idea of of people not showing up for her birthday. It was shitty of them not to RSVP and say that they were going to do it, but at least it was honest – if they’d wanted to be there, they would have come.

This card business is just a deception. No one would even have thought to perpetuate it on a non-disabled person because of all the liberties that they took with her image and her information (and shame on the media for going along with it). And what has been in the almost-year since Hallee Sorenson’s birthday to get to real issue of why people didn’t come to the party? Was it simply that the party was too much for children? Did they pick a bad weekend? Or was it deeper? Was Hallee having trouble with her peers? Did she need some social skills coaching?

Or were her social skills fine, but she needed to get better friends? Like, ones that would actually care about her enough to come to her birthday party, or at least enough to tell her why they couldn’t?

A friend of mine who *is* going to send a card said, “I just feel sad for her.” I do too. Hallee Sorenson didn’t ask for any of this – not the birthday party where no one showed up, or anything after.

Hallee Sorenson’s family is celebrating her birthday with a private family party this year. I hope that she enjoys it, and wish her many happy birthdays to come.

 

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15 Years Post-Stroke: Thoughts on Neural Pathways

15th anniversary graphic - neural pathwaysIt’s that time of year again…the anniversary of my stroke didn’t breeze right by me – I thought of it on May 30, but it was a kind of, “Oh yeah, May 29.”

And it’s a big anniversary, too – 15 years.

The Backwards Bicycle

I found this really interesting video last on the weekend done by engineer Destin Sandlin who had some welder friends of his make a bicycle where the front wheel went the opposite direction from the one in which the handle bars are pointed – a backwards bicycle. What he found was very interesting.

 

For those who don’t want to watch the eight minutes, you can’t ride a bike built like this without a great deal of practice. Destin practiced 5 minutes every day for 8 months before he could ride it.

Destin’s takeaway from all this is that 1) Welders are often smarter than engineers 2) Knowledge doesn’t equal understanding and 3) Truth is truth.  The video got me thinking, however, about stroke, and about how once neural pathways are set to do something one way, it takes a lot of practice to override those pathways and build new ones that let you do a task another way. If you’ve ever tried to learn to write with your non-dominant hand, you know this.

Children are better at tasks involving building competing neural pathways because their brains are very plastic  – it took Destin’s son 2 weeks of practice, 5 minutes a day, to learn to ride the backwards bike, as opposed to Destin’s 8 months, because childrens’ brains change much more easily, and much more quickly, than adult brains. This is also why, if you insist on having a stroke or doing some damage to your brain in some other way, it’s good to do so while you’re young – it’s easier for your brain to build new neural pathways to replace damaged ones.

My Stroke and Neural Pathways

Knowing that, I now know why so much of stroke rehabilitation involved repeating exercises over and over again (I think). It was about taking the parts of my body affected by the stroke and moving them properly over and over until a “path” of neurons developed that supported proper movement.  This link about neuroplasticity explains the process well

For some parts of my weak side, building new neural pathways has gone very well. There are no signs in my face that I’ve had a stroke. I walk with a limp, but I can walk quickly. My arm has good range of motion. However, there’s little fine motion in my foot and almost no fine motion in my hand – at best, I can wrap my fingers around handles on some car doors, but that’s no guarantee that I’ll have the strength in my hand to pull the handle out and open the door.

I was always told that I could expect recovery in my weak side up to 5 years after my stroke and not much after that, but I learned this year, when I did some physiotherapy after a fall, that 1) I still don’t put a whole lot of weight on my left leg, ever, because my brain thinks that I’ll fall if I do and 2) Walking slowly, with a lot of concentration on putting weight on my left leg, is “training” me to walk with much less of a limp. However, I’ve laid down some fairly strong post-stroke neural pathways in the last 15 years (as I’ve learned to get around as quickly as I can while staying upright) that keep that limp pretty stubborn. And as we saw in the video, even after you lay down a new neural pathway, it’s very easy to start to functioning according to the old one again if given the chance.

So the concentrated walking requires a lot of diligence, and in most days I’m in too much of a hurry to be practicing it all the time as I should. Same with my arm and hand. I could probably get more function back if I made a really concentrated effort to use my left arm and hand all the time, regardless of how long it takes to finish a task and how frustrating it is. But I’ve gotten really good at living one-handed, right-handed – I don’t even think about it anymore.I think that this is probably a good place to be 15 years post-stroke, but I guess there’s always a little voice that wonders, “Did I become too comfortable, too soon?”

But it’s not as if a one-handed, weak-legged life, or disabled life in general, is without challenges, even after 15 years. I’m not sure that life will be truly “comfortable” for a long time, maybe ever. But is anyone’s life every truly comfortable? I don’t know. Everyone’s got their challenges.

15 years post-stroke…

…it’s good to be here. No question about that.

I’m working “out there” approximately half-time, and as of recently I can walk to work and back from where I’m working. I’m writing the rest of the time – I wrote a book of personal essays in 2007 (now out of print) about disability and being a stroke survivor that drastically needs an update, and I’ve started doing that.

I’d like to get more involved with disability advocacy work in my own community.

I’ve not been here nearly often enough, and I need to change that. After all, it’s an election year in the US, and 2016 is making 2012 look uneventful. There’s a lot that needs to be said.

15 years. Day-to-day it’s sometimes felt like it’s moved impossibly slowly. But over the long run – so quickly. It’s amazing, really.

 

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Assisted Death and Mental Health – An Unnamed Woman’s Story

Trigger Warning for Suicide, sexual abuse, assisted suicide, euthanasia

caution tape on black background - assisted suicideThe Dutch Euthanasia Commission recently revealed that last year, in the Netherlands, an unnamed woman was granted a death by euthanasia because of suffering brought on by a mental health condition. For people outside the Netherlands, where the debate about assisted death for people with mental conditions is just beginning, it’s a controversial story.

The young lady in question was 22 years old. She’d been sexually abused from age 5 to 15. Metro UK reports that she had “Post Traumatic Stress Disorder, chronic depression and severe anorexia” and “hallucinations and compulsions.” Doctors declared her mental health conditions “incurable”, and the suffering that they caused her “unbearable”, and on this basis she was granted the right to the death by euthanasia that she requested.

There’s a lot to unpack here. I understand why, in light of what we know about this young woman’s condition, suicide looked like an option for her. I don’t understand why she was granted an assisted death and I’m not sure that I agree, based on the information that I’ve been able to find, that she should have gotten one.

“Assisted Death”, “Assisted Suicide”, and “Euthanasia”

Let’s get a matter of terminology out of the way. I will use “assisted death” in my discussion in this piece because while we tend to use “assisted suicide” as a catch-all for several types of death in which a doctor is involved, in the Netherlands it has a particular meaning and isn’t interchangeable with “euthanasia”.  In Dutch law, a physician prepares a lethal injection for an “assisted suicide” but does not administer it.  The physician administers the injection during “euthanasia”. Media sources are quite clear that that this young woman was euthanized.  I think it’s important, for clarity, to use a third term to speak generally about the assisted death debate…on the one hand.

On the other hand, for the purposes of this discussion, the distinction doesn’t really matter: the fact that any kind of assisted death was approved for a chronic psychiatric condition is dicey even in the Netherlands. It requires evaluation by two specialists, one of whom must be a psychiatrist, and both of whom must agree that the applicant is “incurable” and experiencing “unbearable suffering.” Dutch doctors are somewhat reluctant to make these declarations about mental conditions. (Pg 14)

So there’s *that*.

Thoughts on Suicide Generally and Assisted Death Particularly

I don’t like the idea of people committing suicide, of course, but, bodily autonomy – you have a right to do what you want to your body, regardless of how I feel about it. I’ve been suicidal. I don’t think that I truly wanted to die, just as I think that most people considering suicide don’t truly want to die. I think that they’re people in tremendous pain that want it to stop and that suicide sometimes looks like the only option. That’s part of what makes suicide so sad – if you take that option, not aware that there are there are others, or that you can access others, or lacking confidence in your ability to use other options, you can’t change your mind.

But I also think that there’s a very small number of people who have truly decided that they want to die, who have thought it through with a clear head and who fully understand the consequences, and whose unclouded reasoning shows when evaluated by professionals. They want a dignified death that’s under their control, perhaps with loved ones around them, where they don’t have worry about something going wrong and loved ones being traumatized beyond the grief of the death itself. I can respect that. I support that. I think that there needs to be safeguards around the right to access it, but I think that the access should be there.

People who request an assisted death are generally terminally ill, but not always.

They don’t have to be in the Netherlands.

They won’t have to be in Canada, if the legislation proposed in 2015 is passed as presented.

This woman wasn’t, although she may have died eventually if she’d not found a way to manage her anorexia.

Cause for Caution

There are good reasons to consider assisted death legislation that doesn’t have terminal illness as a criteria, but these are good reasons to  approach it cautiously, too.  Three major concerns come out of this story for me:

  1. Granting assisted death on these declarations sets a dangerous precedent, not just for people with mental conditions, but for disabled people in general. Many  disabled people are (rightfully) concerned about assisted death legislation and the potential for people to make assisted death decisions of behalf of disabled people based on perceptions of what living as a disabled person must be like. What if this young woman had not sought an assisted death, but had ended up in the hospital because of the anorexia, and doctors had deemed her “incurable” and her suffering “unbearable” and put a DNR on her? It could happen.
  2. I was an emotional mess to varying degrees until my early twenties, and then things started to turn around with the right meds and good therapy on a regular basis, even as I was getting used to being disabled – I’m uncomfortable with doctors throwing around the word “incurable” for a 22-year-old, especially since she’d experienced temporary improvement with intensive therapy. And I’m not a certified counselor, but I know women and men who experienced long-term sexual abuse in childhood. After a lot of therapy and hard work they haven’t forgotten, but are able to live with it as they go about their full, fulfilling lives. What a tragedy if, still in the thick of it at the young age of 22, they’d asked for an assisted death and a doctor had deemed them “incurable”!
  3. I was anorexic and severely depressed when I a teenager, and I remember my thought processes at the time. I couldn’t trust my perceptions on anything, not just because of the lens of  body dysmorphia and depression through which I viewed everything, but because my body was just so malnourished. I  can believe that this woman had convinced herself that she wanted to die and that she maybe even could have presented some cogent-sounding arguments in favour of giving her an assisted death. But do I believe that someone with  active PTSD, severe anorexia, depression, compulsions, and hallucinations was able to look clearly and objectively about whether she truly wanted to die? I wasn’t there, I didn’t talk to her, I’m not a doctor. I’m not saying she couldn’t. But I think that it’s reasonable to question whether she really could.

However.

When Treatment Doesn’t Work

Again, I didn’t know this girl. I don’t know what she went through in those 10 years. I don’t know what kind of work she did to get better since the abuse ended. Maybe she tried every kind of therapy she could get her hands on, and nothing made any lasting difference.

I do know that for some people, drugs and therapy don’t work for depression. They try drug after drug, and they keep trying new therapists, trying to find one that they click with, and some even try electroshock therapy, and nothing makes a difference. I imagine myself at my worse, depression-wise, trying everything that I can, and feeling more and more discouraged when nothing seems to work…that would literally be hell on earth. Add PTSD to that, and the physical problems that anorexia causes, and I get it. I get what she’d ask for something drastic.  I won’t – I can’t – judge her asking.

Again, Caution

But the fact that she was deemed “incurable” at a very young 22 years when there still could have been so much about her state of mind influencing that decision and she *had* shown some improvement relatively recently makes me think that it was too early to give her what she wanted. And it’s cemented for me the vague feeling of discomfort that I’ve had around the legislation in Canada’s assisted death law, that allows people to make a request based on mental health conditions.

I’m not well when I’m deeply depressed. I can’t trust what my brain is telling me about my life. I need laws (and people that work with them) that work as much as possible with my survival instincts in those times, not against them.

To be clear: I am not suggesting that people with mental conditions lack the capability or capacity to make important life decisions, even when feeling very unwell. That is simply untrue. Each case is individual, and I can only speak for myself. I am just calling for caution. When it comes to assisted death, we need to proceed with caution, and make sure that everyone who needs protection is protected – including the people that may need protection from themselves.

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Lily Parra Needs a New Heart

Dr's prescription pad with "Heart Transplant" written on it - Lily ParraHere’s a familiar story. Four-month-old Lily Parra won’t be put on the transplant list for the heart she needs because of disability. Long-time readers may remember that I’ve written about two similar stories: Children’s Hospital of Philedelphia’s refusal (eventually reversed, after a long fight) to perform Amelia Rivera’s kidney transplant because of her intellectual disability, and the Hospital of the University of Pennsylvania’s refusal to put Paul Corby on the transplant list for a heart because of concerns stemming from him being autistic.

Stephanie Parra was 32 weeks pregnant when doctors informed her about Lily Parra’s heart defect and how it meant that she probably wouldn’t live long past birth. They suggested that Stephanie have an abortion, but she refused.  Lily Parra was born on December 8th, 2015 and went home a month later, after surgery to have 2 stents put in her heart. Her parents took her back to the hospital a week later because of concerns that she was having a seizure. Doctors quickly saw that she was in respiratory distress, and it was determined that she’d picked up a bacterial infection from being in the NICU that had settled in her lungs. After an echocardiogram also showed that Lily had mitral valve regurgitation in addition to her other heart problems, doctors determined that she needed to be put on the transplant list. Read more here about Lily Parra’s health problems

However, an MRI showed that Lily Parra had water on the brain, causing a condition called diffuse cerebral dysfunction that might result in developmental disability. Stephanie Parra says that she was told by doctors generally that “because of this diagnosis, her daughter would have a poor quality of life and therefore, they would not list her for a heart transplant” and by Dr. Shamel Abd-Allah specifically that “I don’t have a bag full of hearts that I can give to everybody and I’m not going to waste a heart on a kid who might have disabilities.

A letter from Loma Linda University Children’s Hospital posted on the online petition that Stephanie Parra has started states Lilly Parra isn’t being considered for a transplant because chromosomal abnormalities that will affect longevity. Stephanie says that she only heard about this when she heard doctors and nurses in the PICU discussing how Lily Parra was missing genetic material on chromosome 2p21. Individuals with this deletion are usually developmentally disabled.

I Get It

Donated organs are in short supply and tough decisions need to be made about how they’re allocated. Doctors should be reasonably assured that recipients are committed to caring for themselves and the organ that they’ve received – taking the anti-rejection medications, following up with doctors, and staying in good health to the greatest extent possible.

I get bringing up some disabilities as a consideration when evaluating people for transplant. If I needed a transplant, I would get it if doctors asked me questions like:

When you’re depressed –

  • Do you realize that you’re depressed?
  • How well do you take care of yourself?
  • Do you ever stop taking your medications?
  • Do you have a plan that you put in place to help you get back to baseline again?
  • How likely are you to put that plan in place by yourself? What kind of help do you need to get it going?
  • How long does it take you to get it going?

If I indicate that every couple of years I get so depressed that it’s hard for me to get out of bed and to work and my appointments, and that I stop taking all my medications, I imagine that this would be concern for a transplant team.

I think is fair is that disability be a concern in the transplant process.

However…

Disability shouldn’t dictate whether a person is excluded from transplant (especially very young children). Lily Parra may very well end up developmentally disabled. The reality is that we can’t know the extent of her disability at this point, and that, just as it would be fairly easy for me to put a plan in place with support from others that ensured I was taking my anti-rejection meds and seeing my doctors even when depressed, Lily Parra can have supports put in place around her as well, if needed, to ensure that she cares for herself as an organ recipient.

I worked with an intellectually disabled woman who never forgot to take her meds. She’d tell me, “I need to take my meds now.”

It’s not fair to decide when a baby is four months old that he or she will not be able to live with the demands of being an organ recipient, even if developmental disability is involved.

Lily Parra – Deeper Issues

Doctors want people who have the best chance of high “quality of life” to receive donated organs, but their conception of “quality of life” is often narrow and ableist. If doctors can’t imagine a recipient getting a typical education and ultimately contributing to society through paid work, family, community roles, etc., then they assume that donated organs would be better off with individuals who can do these things in the stereotypical ways that they envision.

This bias toward the stereotypical “normal life” (and emphasis on how potentially “functional” in society a person is as a criteria for being being an organ recipient), is highly ableist. It’s perfectly possible to have high quality of life while having significant disabilities, and almost certain that quality of life would be even higher without the physical and attitudinal barriers blocking disabled peoples’ full access to society. The view that disability is something that’s in the individual and needs to be cured is so prominent within the medical community that it’s actually called the medical model of disability, and its refusal to acknowledge that disability is a social creation (the social model of disability) doesn’t leave any room for the idea biology doesn’t predict destiny.

Again, especially when a potential organ recipient is very young, it’s terribly unfair to totally base a decision about whether or not someone gets organ on, “Disability always comes with low quality of life.” We should not be making decisions transplants based on whether we think a recipient could or couldn’t reach the quality of life that we’d consider acceptable because:

  1. What doctors consider a good quality of life may not be what the recipient considers a good quality of life.
  2. An individual generally should not be able to dictate what a good quality of life is for someone else.
  3. As much as I respect doctors and clinicians and their abilities, they are frequently wrong about what disabled people end up being able to do. My doctor at my first stroke rehab centre didn’t think that I’d ever really be able to move my left arm again. I have considerable movement in my left arm and am still getting return in my left hand after 15 years.

I Also Realize…

…that we don’t have the full story from Loma Linda University Children’s Hospital. Garrett Caldwell, Executive Director for Public Affairs at Loma Linda, wrote a letter in response to Special Olympics Chairman Timothy Shriver’s op-ed about Lily Parra in the Washington Post, but it was very general (as responses usually are). There are aspects of the story that don’t make sense – like why the Parras were not told about the 2p21 deletion, and why one doctor told them that Lily Parra was in kidney failure and another then said that she wasn’t. It’s totally understandable that parents under extreme stress might misunderstand information or might not remember something that was said to them. There may be other factors behind the decision to remove Lily Parra from the transplant list.

However, there’s enough consistency in Stephanie Parra’s story across media accounts to make me believe that it was said that Lily Parry would not receive the transplant because of a developmental disability or the potential for one, and this is not fair. It’s ableism that needs to be called out and that Loma Linda University Children’s Hospital needs to respond to.

I didn’t like most of Shriver’s op-ed, to be honest – I thought that he relied too much on emotion and not enough on fact to make his argument. But I do think he nailed it with this:

“This is an infuriatingly familiar story, and people with intellectual disabilities know it well. Too many medical professionals see them only in terms of “function” or “dysfunction.” The vast diversity of gifts and challenges that make up each of us are reduced to a binary conclusion. You’re either able or disabled, valuable or not. And when you’re not, you’re hopeless.”

Please sign Stephanie Parra’s petition to have the Transplant Board at Loma Linda University Children’s Hospital reconsider putting Lily Parra back on the transplant list.

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FDA to Ban Electrical Stimulation Devices used at Judge Rotenberg Center – Public Comment Invited

"JRC" in navy letters behind a red circle with a slash through it. Underneath. in black letters: "STOP The Torture! Close It!"Two years after a federal advisory panel met to discuss the Judge Rotenber Center’s use of electrical stimulation devices in behaviour modification protocols, the Food and Drug Administration has announced its intent to ban the devices.

This is something a lot of people (including a past employee of the Judge Rotenberg Center) have been waiting for. The Judge Rotenberg Center is a facility for children in adults with developmental disabilities. It is located in Canton, Massachusetts, and has been open since 1971. It employs a number of controversial behaviour modification practices, but the most controversial by far is the use of aversive skin shocks delivered via devices called Gradual Electronic Decelerators in response to self-injurious or aggressive behaviour. Judge Rotenberg Center is the only place in the United States that still uses aversive skin shocks to condition behaviour.

Judge Rotenberg stands by its use of aversive skin shocks as an alternative for individuals for whom no other treatment is working, and that individuals and their families depend on it. But significant questions surround the use of the practice:

This is just a partial list. For more, read my last post on the Judge Rotenberg Center or visit Lydia Brown’s blog.

The meeting of the federal advisory committee about the Gradual Electronic Decelerators and the aversive skin shocks was a chance for both those for and against their use to make a thorough case. The meeting was in front of the FDA, in order to help them make a decision about the GEDs and the use of aversive skin shocks.

Click here to read the transcript of the meeting, including testimony by autism activists Lydia Brown and Ari Ne’eman

This 126-page report also came out of the investigation into the GEDs and use of aversive shocks.

Judge Rotenberg Center – If I Had My Way…

Even if you haven’t read my past writing about the Judge Rotenberg Center, if you know anything about me I think you can likely predict where I come down on the use of electric shock as behaviour modification on anyone. I’m not an expert on conditioning, but I know enough about it…and behaviour modification programs…and basic human rights and ethical treatment, for God’s sake…that I know that even when there seems like no other alternative, delivering a skin shock to get a person to stop an “undersired” behaviour is totally unacceptable from an institution that claims to be providing support services.

Totally fucking unacceptable and something that we should not be condoning implicitly or explicitly. I’d love to see the Judge Rotenberg Centre closed down tomorrow, and think it should have been closed down years ago.

Seeing them get their electric toys taken away?

It’s a damn good first step.

The FDA Wants to Hear From You

On April 25, 2016, the FDA issued its Proposal To Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.   The Summary states:

The Food and Drug Administration (FDA or we) is proposing to ban electrical stimulation devices used to treat aggressive or self-injurious behavior. FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. FDA is proposing to include in this ban both new devices and devices already in distribution and use.

This is not an official ruling. It’s a proposed rule that outlines why the FDA wants to bans electrical shock devices, and it’s very thorough – definitely worth reading, especially since the FDA is inviting public comment on the proposed ruling until May 25, 2016, with a specific request for comment on their proposed effective date. Comment can be provided in a variety of formats, and information on how to submit comment is listed on the Proposal.

If you have an opinion on this issue, now is the time to make it known! Remember, the Judge Rotenberg Center is presently the only entity affected by this ruling – when the electrical stimulation devices are banned, the facility cannot use them anymore. Ever.

Speak your mind to the FDA, and let’s get this chapter closed.

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