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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Zika and the Problem of Conflicting “Advocate Hats”

zika

Trigger Warning: Abortion, Ableism, Infant Illness

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

My friend said,

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

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

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

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

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

The fear of having a disabled child.

Zika and the Importance of Reproductive Options for Women

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

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

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

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

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

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

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

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

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

Zika and Abortion Specifically

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

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

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

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

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

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

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

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

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

More about this later, probably.

 

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Tomorrow is “Bell Let’s Talk” Day

Bell Let's TalkI’m going to put in a plug for Bell Let’s Talk Day tomorrow because…this is my blog, and I can. 🙂

And it’s a cause near and dear to my heart. Bell Let’s Talk is a charitable initiative spearheaded by Bell Canada to support mental health organizations in Canada. Its goals are to reduce stigma, increase care and access, support the mental health of its own employees and show organizations how to do the same, and to invest in research.

As someone who quite possibly wouldn’t be here without access to professional mental health services when I was at the lowest points of my lifelong struggle with chronic depression and obsessive compulsive disorder, I wish for everyone that they had the opportunities for healing that I did. Even the therapists that I cursed on a regular basis pulled me through, I see now. And while I’ve been fortunate enough not to experience a huge amount of stigma because of mental health diagnoses, I certainly know that it exists. I know that stigma is a huge problem.

I support any initiative that increases access and decreases stigma for people with a mental health diagnosis.

Bell Let’s Talk Day – January 27, 2016

Bell has already committed $100 million in funding. However (from website):

“On Bell Let’s Talk Day, for every text message, wireless and long distance call made by Bell Canada and Bell Aliant customers, every tweet using #BellLetsTalk, and every Facebook share of tomorrow’s Bell Let’s Talk Day image at Facebook.com/BellLetsTalk, Bell will donate 5 cents more to Canadian mental health programs.

Bell’s donations are made at no extra charge to Bell Let’s Talk Day participants, though normal long distance or text charges, if any, apply. To learn more about the campaign, or to download the Bell Let’s Talk toolkit and help get the conversation started, please visit Bell.ca/LetsTalk.

Thanks to the response on Bell Let’s Talk Day 2015, Bell committed a further $6,107,538.60 in funding for Canadian mental health – bringing the Bell Let’s Talk total to $73,623,413.80.”

Bell Let’s Talk – Add Your Voice!

Please support Canadian mental programs tomorrow (January 27) and be sure to check out the Bell Let’s Talk website to see the work that Bell Let’s Talk has supported since 2011, a list of Canadian resources, and 5 simple ways to help end the stigma around mental illness! Thanks!

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Ontario School Board Changes Lice Policy Because Inclusion

Mother treating daughter's hair against lice

Hello everyone! Happy New Year! Let’s talk about lice.

Yes, lice – the nasty little bugs that live and lay eggs in the hair of especially schoolchildren, making costly shampoos and treatments and complicated disinfecting regimes in the house a necessity. In my province, Ontario, most school boards have “no nits” policies that require that children on whom lice and/or nits are found stay home until they no longer have signs of lice. As a result, some children miss multiple days or even weeks of school.

Several Canadian school Boards have decided to rethink the way they deal with lice, in part due to a recent ruling by the Canadian Pediatric Society that lice are not a medical condition, but a “social nuisance”. They do not cause disease and aren’t a barrier to learning. Richard Pollack, an entomologist, told the Toronto Star that “generally speaking, one out of every 100 kids has lice, regardless of the type of policy the school has toward the insects” and that “the only real thing to fear when it comes to lice is hysterical parents running students out of school.” Read More About The New Head Lice Protocol in the Toronto Star

Mark Fisher: “Public Education is About Equity of Access for Everybody”

In Ontario, the Hastings and Prince Edward County District School Board is the latest board to move away from the “no nits” policy. According to its new policy, children with nits and lice will be welcome at school to continue their learning and so that they can avoid the stigma of being sent home because of lice. Anna Maria Tremonti of CBC Radio’s “The Current” interviewed Board Superintendent Mark Fisher on Jan 14th. The CBC doesn’t provide transcripts of their interviews that I can find, so here is one that I did of that portion of the interview:

AMT: Your school had a “no nits” policy, meaning kids with lice had to stay home. Why did you decide to drop that?

MF: Over the past couple of years I was getting a series of phone calls from parents concerned about the amount of time they were missing work and having to come up and pick their children up and not able to return to school…and we decided to take a look at our procedure, which is something that we review every few years. And when we dug into the issue a little bit we realized, ah, that the medical community said that this was a social nuisance and not a medical concern. And at the end of the day public education is about equity of access for all, and we don’t don’t believe in exclusion anymore for something that we don’t consider to be a serious issue.

AMT: You have also mentioned issues around the stigmatization of students. What’s that?

MF: Yeah, part of my portfolio was promoting positive mental health and well-being. I mean, this is an issue prevalent in  society. So think about how stigmatizing it is, for students to be identified as having head lice, sent to the office, and then having to wait for the parents to come and pick them up, and then not being able to return to school for days or weeks. So really, this is not something that promotes well-being in school, and it’s not a policy we’re comfortable with anymore.

AMT: Are you worried that they’ll be stigmatized if they stay?

MF; I think what we want to do is we want to be very culturally respectful of everybody’s needs. So, it’s not that we are allowing lice to be rampant in our schools – we still have management plans at each school, we’ll still do regular checks, and we’ll respect the rights of the individual by letting them stay for the remainder of the day, sending notification home to parents, along with resources about how to effectively treat this. And if there are some families that are unable to treat this, which has been the case in the past, we have set up mechanisms where they can access  get support, financially and  human, to resolve the issue.

AMT: And what kind of support, then? Like, you would actually pay –

MF: {muffled} counselors that could go into the home, work with the family…and if for some reason, and there are some families really struggle with resolving this issue, we have a charitable arm of our school board which they can make application for funding for some of these agencies to come in and take care of the issue for families.

AMT: You know, in a few minutes I’ll be speaking to Kristy Sinclair, one of the parents who does not want kids with lice attending school. Can you understand the fear some parents have, that their kids –

MF: Oh, I absolutely understand it. I’m a parent myself. I can understand why  parents are worried about this issue, but I think there’s a lot of misinformation out there. We did a lot of research, we checked with a lot of different health units, with the Canadian Pediatric Society…and really what we found was that there’s no evidence that “no nits” policies actually reduced the overall prevalence of nits. And in fact, Anna Maria, we have never excluded students from our high schools for this issue and we don’t have any different rate in the high school versus the elementary school, so…

AMT: Hmm. What kind of rate do you have in your schools?

MF: It’s about, just under 1%, which is I think pretty consistent with the information that we found when we looked at on a larger scale.

AMT: Okay. So what are you doing to help parents understand this decision?

MF: We definitely agree that there’s an education role for us as educators, so we really…we sent home a lot of information about a lot of the health units in our area. We’ve also talked about best practices, about how you actually treat and remove head lice…all of that information is available on our website, for anyone that wants to google “Hastings and Prince Edward County District School Board”, and we also have support staff available in those kind of really problematic cases.

AMT: Just take me through it one more time. You say you’ve done research, and the Canadian Pediatric Society says as well that it’s not a medical condition.

MF: That’s right.

AMT: And it’s not a health problem?

MF: Right. It doesn’t spread disease, it’s not infectious. The information that we have says that it’s a social nuisance.

AMT: Okay. And how much pushback are you getting?

MF: Well, I would say that we’re having a loud but vocal minority. I think, you know, change is difficult at any time, Anna Maria, and at the end of the day, public education is about equity of access for everybody. It’s a great equalizer. And you can’t have equity of outcome for our students when they graduate if you don’t provide equity of opportunity, so if our most vulnerable students aren’t allowed to come to school to learn, to participate, and to resolve the issue with support, I think that’s kind of counter to what we stand for.

Tremonti went on to interview Kristy Sinclair, creator of the “Stop the New Head Lice Protocol” Facebook group, and Richard Pollack, the entomologist that also talked to the Toronto Star. Listen to the full interview here.

The New Head Lice Protocol and Supporting Inclusion When It’s Easy

Here’s the thing.

I have some gut feelings on this on this issue that I admit are based on a very small amount of research and probably more on the idea of having lice than anything else. I think that Fisher makes some valid points. I think that Sinclair ‘s points about how life infestation *can* become a medical issue when children scratch to the point where they break open skin and give themselves infections, and that the cost of treating lice can over and over and the time at work lost for parents makes the policy economically punitive for families, are also valid.

And for the record, I’ve got no problem with any initiative that reduces stigma for children who get lice. I’m not sure that this policy change will do it, but I could be wrong, of course,

But the main reason that I wanted to comment on this story, and why I wanted to include a transcript of Tremonti’s interview with Mark Fisher, is that I’m fascinated by the co-opting of the language of inclusion as a reason for the policy change.

I’ve never worked in the Hastings and Prince Edward County District School Board, or any of the Boards that have moved away from the “no nits” policy in favour of the one that allows students with lice to return to school. I’d like to see how their inclusion policies for disabled children are working (acknowledging, of course, that perhaps the Hastings and Prince Edward County District School Board has an exemplary record of providing equity of access to everyone, including disabled students). Perhaps all disabled students in the Board do get to attend school and get what they need at school to allow them to learn and participate to the full extent that they can, like their peers do.

If so, congratulations to Hastings and Prince Edward County District School Board – I’m glad that this particular school board has been able to overcome all of the physical, social, and attitudinal barriers in all its its schools that prevent the full participation of disabled students, that they can now focus on making sure that non-disabled students with lice can fully participate while dealing with a (their words) non-medical issue that’s not widely understood socially.

I’m glad that inclusion for students with disabilities no longer seems to be an issue for them, that they can put all this focus on a non-medical issue that that affects one student in 100 at any given time.

I’m glad that all the challenges of families of disabled children in their school are being sufficiently met and in such an efficient way that the board, in its quest for inclusion and for making sure that all children can get an education, can provide counselors in the home and funding to help meet the needs of families of children with lice.

I’m glad that the Board feels that it’s the school’s place to work in partnership with community agencies to make sure families of children with lice are getting what they need, and that they’re willing to be part of education and awareness-spreading. I guess that they’ve got all the partnerships they need when it comes to disabled students and their needs. Good for them.

(In case it’s not coming across, I’m laying the sarcasm on fairly thick.)

Go ahead and call me a cynic, but I think we have a case of, “It’s easy for a school board to believe in  inclusion and providing “equity of access for all” when it doesn’t cost a lot them a lot of extra money.” Again, I have no idea about this particular board’s record on inclusion, and perhaps I don’t even have a right to be skeptical. But we’ve all heard stories and seen stories in action about schools subtly (and not so subtly) demonstrating that inclusion of disabled students and a commitment to equity of access when it comes to their education is *not* their policy even when it’s their policy. I’ve heard far too many stories. I don’t like that I’ve become skeptical, but there it is.

If I was the parent of a disabled child in a board replacing their “no nits” policy, I’d want some assurance that *my* child’s right to equity to access would continue to be preserved, or be preserved at least as well as, that of children with lice. There’s a lot in here that need to apply to *all* students as a general rule, on a daily basis basis – cultural respect of needs, respect for the rights of individuals, and preservation of all students’ rights to learn and participate. If you’re going to go on the radio and say that you stand for inclusion for everyone, you’d better be prepared to stand behind it.

 

 

 

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Happy Holidays

Happy Holidays vintage greeting card with jolly and christmas tree branches

I haven’t been here for a while.

And there’s been so much to write about! Since I last posted I’ve watched both a Republican and a Democratic Presidential debate. Donald Trump declared that if he becomes President, he’ll ban Muslims from America. Quebec’s laws on physician-assisted death changed. And this week themighty.com published (and later took down) a piece called “Meltdown Bingo” that offended both autistic and neurotypical disability advocates and prompted the creation of the #CrippingTheMighty hashtag on both Twitter and Facebook (read The Mighty’s apology for “Meltdown Bingo”)

I’ve been working and trying to finish up another writing project, and I’ve been sick with a cold for 10 days. And, of course, I’ve been preparing to spend Christmas with my family, which now includes a new niece and nephew – 5-month-old twins, siblings to my now 4-year-old niece.

So I hope you’ll forgive me if, by way of a Christmas piece, I repost what I wrote last year.

Happy Holidays to you all. 🙂


When Christmas Doesn’t Mean Family

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

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

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

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

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

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

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

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

But it does leave people alone on Christmas Day.

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

And it’s not really the point, anyway.

Christmas Isn’t Just for People with Family

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

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

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

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

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