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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.


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.


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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Attawapiskat Needs Help

Stretched leather sign against blue sign says "Wacheeya Welcome to Attawapiskat First Nation". There is a silhouette of a howling wolf on the sign. The First Nations community of Attawaspikat in Ontario, Canada, is in a state of emergency. Since September 2015, over 100 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.

The Canadian First Nations people have struggled with significantly increased suicide rates when compared to the non-First Nations 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 First Nations 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 mould 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 First Nation communities in Canada like Attawapiskat, focusing on the brutal 140-year history of Canada’s residential school system. These schools housed 150,000 First Nation 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 children and youth currently receive, but one that is:

  • Funded to the same level as that of non-First Nation 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 First Nations 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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10 Days


Doodle 10 anniversary chalk mark on spiral notebook page isolated on white background

The blog has been down for 10 days. When I typed “girlwiththecane.com” into my URL bar and my site actually came up, I almost cried.

I never knew how important this blog, that I’ve spent 5 years building, was to me…until I was practically sure it was gone.

I’m sorry to everyone who’s come looking for me in the past 10 days, only to have it look like I disappeared.

Thank you to whomever I spoke to in Tech Support on the phone today who finally got things moving and made things right again. It only took 14 phone calls and over 15 hours on the phone with your department in the last 10 days.

I’m so glad to be back. Have a great weekend.


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Administrative Note

GwtC-LOGOSome time in the next few days (probably over the weekend) I’ll be moving the blog over from this self-hosted domain to Blogspot.

I’m taking the domain with me, so once I’ve pointed the domain to where I’ve copied all my content and the little Internet elves have had time to make the changes, you’ll still be able to access the blog at girlwiththecane.com.

But if for whatever reason a long period of time goes by where you can’t access the blog as usual, you will still be able to able to access all posts at http://girlwiththecane.blogspot.ca/.

Keep watching Twitter and the Facebook page for updates!

See you soon over at Blogspot!

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Thoughts on “How Do You See Me?”

how do you see meOn Tuesday I dropped into Twitter to see what people were seeing about Primary Tuesday, and got distracted immediately by a discussion that noted disability writer and advocate David M. Perry was involved in. I jumped right in uninvited, because apparently that’s the kind of Twitter user I’ve become. I felt quite strongly about the topic once I investigated, though, which was this year’s Down Syndrome Awareness Day (March 21) video from Italian Down Syndrome advocacy group CoorDown. The video is entitled “How Do You See Me?”, starring AnnaRose Rubright, a 19-year-old woman with Down Syndrome, and actress Olivia Wilde:




I understand what CoorDown was trying to do with “How Do You See Me?” They were using the Olivia Wilde character, “normal”-looking and someone that anyone would expect to make those statements to get people interested, and then there’s the “gotcha”: the narrator isn’t the Olivia Wilde character, like you assumed, but a person with Down Syndrome. How does that change things for you, CoorDown, asks? How do you see AnnaRose? What assumptions do you have about her do you need to challenge?

CoorDown’s intent with “How Do You See Me?” wasn’t bad. But the messaging  is bad. The optics are bad. David Perry was trying to tell a CoorDown representative this yesterday, but the person wasn’t very receptive.

Here are some things about the video that were problematic for me

Disabled People Shouldn’t Be Required to Identify as Non-Disabled

There’s an implication in “How Do You See Me?” that in order for people with Down Syndrome (and, by extension, disabled people in general) to “see” or perceive themselves as people with valued social roles, and a well-rounded personality, and dreams, and a life in the community that brings them fulfillment, they also have to self-perceive as a white, non-disabled person. Not only should it not be necessary in this day and age for disabled people to self-perceive as non-disabled in order to live like a non-person person (period…forget about skin colour), it explains why this video is drawing criticism from disability advocates everywhere.

In “How Do You See Me?” AnnaRose Looks and Sounds Like She’s Waiting to Start Her Own Life

This isn’t the case, by the way. AnnaRose goes to college, works at a physiotherapy clinic, and is a Special Olympics athlete.

Yet, in “How Do You See Me?”, we hear her voice talking about “seeing” herself being and doing a lot of things while we watch Olivia Wilde do them.

As Crippled Scholar says:

“The video would have been far more poignant and entirely less infuriating if it had shown the narrator engaging in the activities she described rather than Olivia Wilde.”

Mixed Messages in “How Do You See Me?”

The video posits, presumably unintentionally that it’s better to have Olivia Wilde’s face than it is to have AnnaRose’s face, with the distinguishing features found in most people with Down Syndrome. For a video created for Down’s Syndrome Awareness Day, by a Down Syndrome advocacy group, that sends a rather mixed message to me.  Piggybacking a bit on my last point, it would have been nice to see more of AnnaRose in the video, not so much of “Olivia Wilde plays a girl with Down Syndrome” and “Olivia Wilde has Down Syndrome…”, which seem to be the ways the preview for the video appears on Twitter when it’s shared – without AnnaRose’s name.

Bottom Line

Again, it’s not that I think that CoorDown intended to film something that was problematic.   But there’s an implication “How Do You See Me?” that disabled people should see themselves as non-disabled simply because of an ableist assumption that non-disabled is better. And I can’t get behind that, especially from a video that’s supposed to raise awareness about Down Syndrome.



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Hillary Clinton Lies about Nancy Reagan’s Record on AIDS

hillary clinton

PARIS, FRANCE – JULY 07, 2014: First appearance of Hilary Clinton on national French television channel TF1 after meeting Vladimir Putin, Russian President

Let me just preface this by saying that while I really like Bernie Sanders and have been hoping that he’ll get the Democratic nomination, I don’t go around trashing Hillary Clinton, either. I’ve been of the belief that either would make a great candidate, and that I’d support (from Canada) either of them and tell people “You need to vote for this person!” because America needs to keep a Republican out of the White House. However, even candidates that we support sometimes need to be called out on things, and Hillary Clinton needs to called out (as people have been doing, thank goodness) on remarks she made on March 11 about Nancy Reagan’s record on the AIDS crisis as it emerged in America.

I’m quite concerned about them, not just because they were utter bullshit, but because I’m not sure now what to think about Hillary Clinton.

Here’s some CNN commentary about Hillary Clinton’s remarks to MSNBC:

Judging from reactions that I’ve seen yesterday and today, it’s going to take a lot more than a weak apology on Twitter to undo the damage caused by her statements.

She did not “misspeak” about how Nancy Reagan handled the AIDS crisis.

She lied.

The Reagans and the AIDS Crisis – I Don’t Remember, But I Learned

Hillary may think that ABC’s viewers may not remember what happened when AIDS first emerged in America, but I think that she’ll learn (if she hasn’t already) that this isn’t the case. And a whole lot of people have learned about it. I wrote an essay about it in high school, totally unprepared for what I was going to find when I began my research. What I learned from (from Randy Shilts’ “And the Band Played On: People, Politics, and the AIDS Epidemic”, mainly) shocked me and broke my heart. I was just 18. I didn’t know that governments could (or would) treat sick people that way. Writing that essay had a powerful impact on me, more so than most of the writing I’ve done.

Later on, I read transcripts from the era, which Mother Jones has compiled. They fleshed out a terrible history of rampant discrimination, where people died of an unknown disease and the government didn’t  care because it was only showing up in gay people, prostitutes, and intravenous drug users. Shame on Hillary Clinton and her revisionist history that in thirty seconds swept that ugliness under the rug and made the government sound like it  was instead doing good at the time.

My Concern Now About Hillary Clinton

Hillary Clinton’s history is in general a blind spot for me. I don’t know a whole lot about Benghazi, except that there were a lot of investigations that found nothing. I know a bit more about the email server issue, but not enough to explain it to someone thoroughly.

I’d been giving her the benefit of the doubt on these things and assuming her innocence. But seeing her lie so easily makes me nervous. Seeing her lie about something that’s so widely known and easily disproved makes me nervous. I mean, I’m Canadian and I’ve known about this since I was 18.

What does it say about Hillary Clinton, and about what she actually thinks of the voters?

I’m quite thrown off by this, and not sure what to do with it.

ETA: Today, I found this article written by Hillary Clinton, on Medium…by accident. I see that it’s also on her Facebook page, but I only went there to check because a comment prompted me – I’ve never looked at Hillary Clinton’s Facebook page before today, It’s entirely possible that I might have missed this article if I hadn’t gone wandering on the Medium site. For that reason alone, I’m not sure what to think of it, but there are a couple of other things that leave me cold: 1) There’s no apology  2) She doesn’t explain *why* she said what she did, granted that she knows all this history.  I actually feel like she may have dug the hope deeper with this.

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