Trumpcare, Mental Health, and the Goldwater Rule

Back to politics today for  a moment…because there’s something I want to say, and because I’m struggling with something about Donald Trump and the Goldwater Rule.

Content Note: Ableism, Healthcare, Politics, Trump, Mental Health

Senator Susan Collins, a white woman with short red hair wearing a dark blazer, white blouse, and pearls, stands in front of an American flag background. Keyword: Goldwater Rule

Image Description: Senator Susan Collins, a white woman with short red hair wearing a dark blazer, white blouse, and pearls, stands in front of an American flag background.

Although I have Republican friends that I cherish in spite of our differences in opinion, regular readers know that as a group I’m hard on them. I’ve called them out, sometimes by  name (some have told me unfairly.) I don’t believe that I’ve been off-base.

But I also believe in giving credit where it’s due. So, to Senator Susan Collins of Maine and Senator Lisa Murkowski of Alaska, who’ve stood firm in this round of Obamacare repeal deliberations that what’s been included in the proposed repeal scenarios are not good for their constituents, despite bullying from Donald Trump, thank you. Thank you on behalf of my disabled American friends, and the children, families and elderly people of America that not only depend on Medicaid to keep them happy and healthy, but depend on it to keep them alive. Thank you for insisting that America be a country where everyone is taken care of. Your integrity and courage give me hope.

Senator Lisa Murkowski of Alaska, a white woman with short blonde hair wearing a red blazer, a write blouse, and a pendant on a chain, stands in front of some trees. Keyword: Goldwater Rule

Image Description:  Senator Lisa Murkowski of Alaska, a white woman with short blonde hair wearing a red blazer, a write blouse, and a pendant on a chain, stands in front of some trees.

Thank you also to John McCain, a man with whom I’ve definitely had my disagreements, who came to Washington in spite of his cancer diagnosis, right after brain surgery, speaking eloquently about bipartisanship and the need to work together to craft a plan for healthcare, pushing himself through the week and into the early hours of the morning last Friday night to cast the vote that brought down Trumpcare. Sir, I salute you.

Senator John McCain, a white male in his 70s with white hair wearing a navy blazer and blue dress shirt. stands against an American flag background Keyword: Goldwater Rule
MESA, AZ – June 4: Senator John McCain (R – AZ) appears at a town hall meeting on June 4, 2010 in Mesa, Arizona.

Image Description: Senator John McCain, a white male in his 70s with white hair wearing a navy blazer and blue dress shirt. stands against an American flag background.

I won’t ever forget what the three of you have done for my American friends.

And to the rest of GOP who are struggling with the idea of single-payer as an idea for health care in the US…on one level, I get it.

Didn’t think I’d say that, did you? Well, I’m nothing if not practical. Single-payer isn’t a perfect system. Not by a long shot. Are there wait times? There can be, for non-emergency issues especially. Is it bureaucracy-heavy? Not any more than the bureaucracy created by the American system having to deal with many insurance plans, I’d argue, but I could be wrong. But even though I waited a couple of months for the functional MRI that the AVM Clinic at Toronto Western Hospital needed to decide how to best treat my AVM, I didn’t have to worry about whether my family could afford to have one of the best neurosurgeons in North America specializing in AVM treatment rooting around in my head for 14 hours.

Take our system and make *your* single-payer system better. Show us up. In fact (if it’ll get you moving on this), I’ll bet that you can’t do it. Go ahead and prove me wrong.

Please! 🙂

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Now…why I’m struggling.

Donald Trump, Mental Health, and the Goldwater Rule

Last week, two friends who work in the mental health field, for whom I have a great deal of respect, said that despite their concerns about the Goldwater Rule, they firmly believe Donald Trump has a mental health condition and needs evaluation to determine whether he’s psychologically healthy enough to continue on as President. The American Psychoanalytic Association officially said recently that members shouldn’t feel restricted by the the Goldwater Rule when discussing Trump.

This is a tough one for me. I don’t like Trump at all, simply because I don’t tend to like people that are lying, arrogant bullies.  But I’ve fought hard against the idea that he’s unfit for office because he’s “crazy” because:

  • Even the most qualified mental health diagnostician would need time and access to Trump to make an accurate diagnosis
  • If the policy is that a clean bill of mental health is required to be the President, then Presidents as far back as Lincoln have been in violation
  • It’s ableist. There’s no reason that a President with a well-managed mental health condition should be treated any differently, in terms of perception of ability to govern, than a President with any other sort of well-managed condition.

And I think that ultimately I still believe that the Goldwater Rule should apply to the position of the President, provided that some other safeguards are put in place (because we do know that Presidents have had mental health conditions, and even degenerative brain conditions, that went largely unnoticed while they were in office):

  • Any President (not just Donald Trump) gets his or her mental health evaluated by an independent mental health practitioner on a regular basis. (I don’t know if this happens, or how often.) The Presidency is an extremely high-stress job, and it’s not unreasonable to periodically check at the very least whether that stress is having an adverse affect on the President’s well-being.
  • Concerns about the President’s mental health are treated like concerns about the President’s physical health – they are quickly, and thoroughly evaluated and, if necessary, treated. The President takes time off work if necessary, but the assumption is that he or she will be able to return to work, and that it will happen as soon as possible. The public is entitled to no more information than it would be if the President had a physical issue.

In other words: If the White House properly monitored the President for mental health conditions and ensured that if there were any conditions that were affecting the President so much that they interfered with his or her ability to govern that the President took time off (if necessary) and received the treatment and education needed to ensure that the condition was well-managed and no longer an issue…then I’d continue to stand on the Goldwater Rule and say, “It isn’t up to people who’ve never spoken to President to make a diagnosis. It’s up to the White House.”

But I don’t have that confidence in this White House. They can’t even make Donald Trump stop using his phone. They’re not going to convince him to let someone do even a simple mental health evaluation, or start treatment if that was deemed necessary – and Donald Trump is not a man that would step down. Not for the good of his health. Not even, I don’t think, for the good of his country.

So, I Struggle…

I’ve struggled as I’ve watched mental health diagnosticians openly break the Goldwater Rule since Trump’s election with their pronouncements in the media that he’s got any number of mental health conditions.

I struggle now, wondering if they were right to break the Goldwater Rule the way they did.

I don’t think that a mental health condition should automatically disqualify anyone from any job – I know too many people with well-managed mental health conditions that are in high-stress positions and that do an excellent job. But, like my friend said:

Whether someone agrees or disagrees with the content of his inflammatory statements, that is not the issue. This is not a matter of attributing mental illness because of disagreement with his views/statements. If you go back and view interviews with him from decades ago, he’s still the same big jerk, but his behavior has changed.”

It’s one thing to be a seventy-year-old civilian man with no insight into behaviour change and perhaps the need for help, and with apparently no one around you who will call you on that blind spot. It’s quite another thing when you’re the most powerful man in the world.

I think I know now where I land on this. If the White House won’t take action when there are indicators that the President needs treatment for a mental health condition, other people with experience and knowledge in the field of mental health need to be allowed to speak without fear of what it could cost them. It’s ableism to say, “People with a mental health condition can’t be President,” but it’s not ableism to expect Presidents that do have mental health conditions to work with their staff and medical team to manage those conditions so that their ability to govern isn’t affected.

To be clear:  Mental health professionals who are worried that Donald Trump isn’t competent to lead need the freedom to speak about it. Someone has to.

 

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Utilitarian Thinking and Ableism

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

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

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

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

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

Well, that’s very gracious of him.

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

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

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

Peter Singer, Disabled People and Rape

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

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

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

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

As Robinson says:

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

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

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

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

And we all know how much I love those.

Utilitarian Thought and Assumptions

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

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

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

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

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

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

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

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

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

Bottom Line

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

I wish I was.

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

True equality still seems a long way off.

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Lily Parra Needs a New Heart

Here’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.

Content Note: Ableism, Child Illness, Organ Transplant, Medical Model of Disability

Dr's prescription pad with "Heart Transplant" written on it. Keyword: Lily Parra

Image Description: Dr’s prescription pad with “Heart Transplant” written on it

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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  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 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 it’s that disabilities with the potential to affect how well a transplant recipient  adheres to the regimen that will endure the success of the transplant be a concern in the evaluation for the recipient’s suitability for a transplant.

However…

Disability on its own 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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Ontario School Board Changes Lice Policy Because Inclusion

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.

Content Note: Stigma, Hypocrisy, Double Standards

White woman with long blonde hair, wearing a beige sweater, examines the head of a white little girl's long, blonde hair for lice. Keyword: Lice

Image Description: White woman with long blonde hair, wearing a beige sweater, examines a white little girl’s long, blonde hair for lice.

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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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The Zadroga Act: 9/11, Republicans, and Hypocrisy

As I’m sure most, if not all, readers are aware, yesterday was the 14th anniversary of the 9/11 terrorist attacks in the United States. But do you know about the Zadroga Act?

Content Note: Vivid 9/11 imagery, Politics, Healthcare

Obama signs Zadroga Act

Image Description: Barrack Obama, wearing a white shirt, sits at a wooden table outside at Plantation Estate in Hawaii, signing the Zadroga Act in 2010.

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I remember where I was when the planes hit the towers on 9/11. I was living with my father in our family home at the time, not that far into stroke recovery and still trying to visualize what was going to come next in my life. I was in the kitchen, finishing up my breakfast, when I heard the news about the on the radio (always tuned to the Canadian Broadcasting Corporation in our house) about the plane hitting the first tower. I sat in shock for a moment, and then called Dad at his office and asked if he was listening to the radio. Did we know anyone that was supposed to be in New York today, that he knew of?

No, thank goodness.

When I heard the news about the second tower, I remembered the online mental health support community in which I’d been posting for a while. I quickly signed in, and found that there was already an “I’m okay” check-in going on from the New York area, and a call going to out to people who hadn’t checked in yet. By the next day, all of the regular posters in the New York area were accounted for, but some of them had lost friends and family.

In other words, I was not really affected.

I will always be proud of how Canada helped take care of diverted passengers. But I remember being very annoyed at the CBC radio reporter who, during the 6pm news report on September 11, tried to interview a New Yorker who was obviously severely traumatized and likely had no clue no what he was saying.

“Sure, ask him how he’s doing,” I grumbled at the time. “I’m sure he’s fabulous. I’m sure it’s been a *great* day for him. Way to report, CBC.”

And I remember the December 2010 Daily Show segment where Jon Stewart shamed a group of Republicans for filibustering the passage of the Zadroga Act in the Senate because I thought at the time, “Those fucking hypocrites.”

What’s the Zadroga Act?

You wouldn’t know from watching the CBS news last night. They talked about it, but didn’t mention it by name, as if the name of the Act that guarantees health care for the First Responders that developed one or more of the (in society as it’s constructed today) disabling conditions and illnesses including 50 forms of cancer that are linked to working in the toxins at Ground Zero doesn’t need a name. Or as if acknowledging the First Responders are still sick and dying after working at Ground Zero, fourteen years later, isn’t important.

In 2010, the Zadroga Act covered these conditions:

  • Interstitial lung diseases
  • Chronic respiratory disorder
  • WTC-exacerbated COPD
  • Asthma
  • Reactive airways dysfunction syndrome
  • Chronic cough syndrome
  • Upper airway hyperreactivity
  • Chronic rhinosinusitis
  • Chronic naropharyngitis
  • Chronic laryngitis
  • GERD
  • Sleep apnea
  • PTSD
  • Major depressive disorder
  • Panic disorder
  • Generalized anxiety disorder
  • Anxiety disorder NOS
  • Depression NOS
  • Acute stress disorder
  • Dysthymic disorder
  • Substance abuse
  • Adjustment disorder
  • Some musculoskeletal disorders

More conditions have been added (including, as I said, over 50 cancers.)

“Call the Act by it’s name!” I yelled at the TV.

But What’s the Zadroga Act?

The Zadroga Act is named for James Zadroga, a First Responder who died in 2006 of respiratory disease frequently observed in 9/11 First Responders.  It was passed by the House of Representatives in September 2010, and the Democrats hoped to get it through the the Senate before the Christmas Break. However, in December 2010, Senate Republicans filibustered the passage of the Act, trying to get a tax break package through. There was a motion to break the filibuster and proceed, but it failed with just 3 votes short of the 60 needed (breakdown of the vote here, including who voted which way), despite the Zadroga Act having enough support to get through the Senate. The Democrats investigated a number of options, but couldn’t see any way that they could get the Zadroga Act through in the new year, with the Republicans set to take control of the House.

However, in the 11th hour of the 111th Congress, things turned around and the Zadroga Act was passed. The New York Post said:

“Certainly many supporters, including New York’s two senators, as well as Mayor Michael R.Bloomberg, played critical roles in turning around what looked like a hopeless situation after a filibuster by Republican senators on Dec. 10 seemed to derail the bill. But some of those who stand to benefit from the bill have no doubt about what — and who — turned the momentum around.”

Jon Stewart refused to comment, but he will stand again with sick First Responders next week when he protests in Washington for its reauthorization. Because when the Zadroga Bill was passed in 2010, it was only for 5 years, it needs to be reauthorized by the end of the month, and Congress hasn’t looked at it yet.

The early part of the 2010 Jon Stewart segment in one piece is no longer available on YouTube. But the part where he brought the First Responders into the studio is available via a clip from the Rachel Maddow show.

Here are the points that I really like:

  • Shame on the Republicans for being happy to be the party that “turned 9/11 into a catchphrase” while ignoring the responsibility that they have to the people who need help because of the work they did to help America deal with the 9/11 aftermath. Don’t talk about how grateful you are to “New York’s Finest” unless you’re prepared to back it up with your actions like providing them health care through legislation like the Zadroga Act.
  • News coverage. There was very little coverage of the struggle to get the Zadroga Act passed last time around, and if Jon Stewart hadn’t stepped in again, I doubt we’d have heard much about it this time around. Granted, I’ve not been watching much news, but that little piece on CBS tonight was the first I’d heard of it without Jon Stewart’s name attached to it.

The day after Stewart’s show in 2010, Fox’s Shepard Smith had this to say (trigger for vivid 9/11 imagery):

I think that pretty much says it all.

Visit Zadroga Claims Info  for more information about the Zadroga Act, and for an easy opportunity to email your Member of Congress expressing your support for extending it indefinitely

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