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Saturday, 22 March 2014

Vaccination Safety and Autism: An Irritating Debate

Measles outbreaks in both Canada and the United States are bringing the debate about vaccination safety and autism out in force again. And, as I often do when I see a Facebook debate among my friends on vaccination safety and the decision not to vaccinate children, particularly when it involves fears about autism, I jumped right into the one that I came across the other night.

The vaccination safety debate just irritates me. Not just because, as the The Daily Beast said so succinctly the other day, "The original study that started us down this insane path by linking the MMR vaccine to autism has been retracted outright", but because of what it says about where we are in how we view autism even if there was a link.

Let me be clear before I proceed along this line of thinking that I don't believe that there's any evidence currently out there that's strong enough to substantiate the claim that there's a vaccination safety issue with respect to autism. But, as a hypothetical, even if there was a link, and say, 1 in 1000 vaccinated children ended up being diagnosed with autism spectrum disorder, what's worse? Taking the risk that your children might contract one of the diseases that are making a comeback after being almost eradicated because fears of fears about autism and vaccination safety (mumps, whooping cough, and the highly contagious measles), and that can potentially have serious health complications, or taking the risk that your child might develop autism?

When I hear someone say, "I won't vaccinate my child because of autism," I think, "Is the idea that your child might develop autism *that* scary?"

There seem a be a large group of parents out there who are scared to death of having an autistic child. That's puzzling and sad to me. And irritating.

The Vaccination Safety Debate: The Disability Issues


I don't think that when people say, "I'm not going to vaccinate my child because I've heard that vaccinations cause autism" that they're picturing autistic people like internationally known scientist Temple Grandin, Pulitzer Prize winner Tim Page, jazz prodigy Matt Savage, or actor Dan Ackroyd. Or figures suspected to be autistic that changed the course of history with their contributions to the world: Mozart, Einstein, and Andy Warhol.

I doubt that they're thinking of how (shocker!) an autistic person could change the world.

I get the sense that they're thinking of a highly stereotyped view of an autistic child: not capable of communicating verbally, unresponsive, continually melting down with no way to prevent it or address it once it's started to happen, and needing constant care. While there are certainly some autistic children whose disability does manifest in this way, it's not by any means what every autistic person experiences. As was said in the vaccination safety debate in which I was involved the other night, and as I've heard said many, many times before (and said myself): If you've met one autistic person, well, you've met one autistic person.

But society still tends to make an extremely problematic (and irritating) assumption that there are few prospects for a satisfying life, or a life that contributes anything to society, for any disabled person that needs a high level of support. And that's simply not true. Judith Snow fundamentally changed how disabled Canadians receive support (and continues to do so) from her wheelchair, and Martyn Sibley is one of the most prolific disability advocates that I know. And so many more! I need to write a blog post just on this subject.

As for not being able to communicate verbally using words, we only need to look at Helen Keller to see that this is a barrier gotten around, or look to the more recent advocacy work of autism advocates Henry Frost and Amy Sequenzia. Henry uses augmentative and alternative communication (AAC)  methods to communicate, and Amy communicates through typing. Communication tools and techniques for autistic people have come a long way, and Henry and Amy (among others) use them to speak compellingly and eloquently about their experience of being autistic and the importance of respect for all people.

Vaccination Safety And The Culture of Fear Around Autism


Related to the above point, the idea that having an autistic child in particular would be catastrophic, both for the child and for the the people that love the child, comes from the way that society has been encouraged to view autism. It's part of why I don't support organizations (like Autism Speaks) that paint having an autistic child as something that will devastate a family. See here and here.

Along this line, analyze the language used in this article about anti-vaccination activist Jenny McCarthy  - autism diagnosis as "tragedy", speaking about how children "slip away" to autism, as if they've died. Rich Lowry, understand that in your own way you're contributing to what keeps parents clinging to this vaccination safety nonsense - their fear - and that irritates me, too, but I'll give you a bit of leeway because your points about why childhood vaccinations are so important are spot on.
These are dangerous illnesses, and the victims of an outbreak are often infants too small to have yet received vaccinations. Jenny McCarthy styles herself a “mother warrior.” If so, the kids sickened in the fallout from reduced vaccinations are the victims of friendly fire. Nothing good can come from undoing one of the miracles of medical progress.

Yes, Rick. I think he's irritated about this vaccination safety debate too!

Some children can't be vaccinated for legitimate reasons. We rely on herd immunity to keep them safe. When large numbers of people don't vaccinate, herd immunity becomes less effective. Not vaccinating a child puts more people in danger than that child.

A Focus on Vaccination Safety Because We All Want Answers


Of course we all want to know what's causing autism and why the rates of autism diagnosis continue to rise. Could it be as simple as (as a participant in the debate suggested the other night) that we're continually getting better at recognizing and diagnosing autism, when in the past it's been called other things? Or because the definition of autism has been somewhat fluid and continues to be so, with the most recent changes in the DSM-V?

I'm not sure that accounts for all of it, but I think it must be some of it.

I just wish that we, as a society, would get it through our collective heads that:

1) Disability isn't the end of the world, even though we've been taught it is

2) Autism (by all definitions, for as long as I've been in this field) is a spectrum disorder, not something that looks the same in everybody.

3) There's no proof that vaccines cause autism.

Until then...see you in the next Facebook debate about vaccination safety. I can't seem to stay quiet when I see one.

Image credit: arsgera / 123RF Stock Photo

Monday, 3 March 2014

Christopher McFadden: Why The Update Doesn't Change Much for Me

Wow it's been a long time since one of my posts has gotten the attention that the one about Christopher McFadden has. I felt like it was important to write the follow-up quickly.

And I feel like it's important to explain why I posted what I did even though I knew (just barely) that Christopher McFadden had recused himself. I'm not the mother of a disabled child, but when I was working in social services, I got very attached to the people I supported. I'm still in touch with many of them. The friendship that gave me the passion that I have for this work spans over half my life. And I've always been very lucky that when I've needed to call on the legal system in my work with disabled people, almost all the people involved have been compassionate and very aware of the issues involved with working with that demographic.

But I've heard awful stories, sometimes perpetrated by people who are sure that they're doing the right thing. As far as I'm concerned, this was one of them. I wanted to show that as family members, friends, caregivers, service providers, we have to...not live in fear, because there are plenty of good people out there.  But we have to be constantly vigilant as well, because we can't always trust that people who should be protecting the vulnerable people in our lives are actually going to do it. That balance between being vigilant and living in fear is difficult to strike, but we can't afford to let that guard down.

Anyway. On to the latest update about Christopher McFadden.

My Thoughts on Christopher McFadden Recusing Himself


According to this article, Christopher McFadden recused himself from the new trial he'd ordered for William Jeffrey Dumas, convicted in 2012 of raping a 24-year-old woman with Down Syndrome three times within a twelve-hour period.

Up until now the media has mainly focused on Christopher McFadden's concerns that the woman (I've been calling her Jane) did not "act like a victim" and Dumas did not "act like a perpetrator",  a stance for which he (rightfully) received criticism. This article elaborates on some of his other concerns:

  • The State's overemphasis of the importance of the physical evidence (Dumas' semen on Jane's bedsheets, the fact that Jane's injuries suggested forcible intercourse): "'The physician who testified,' McFadden wrote, "did testify that her findings were consistent with forcible rape, but she did not testify that her findings were proof of forcible rape.'" Read more here

  • Inconsistencies in the timeline of events that Jane reported.

Christopher McFadden does appear to be acting in what he believes is a responsible manner. Judges can act as a "thirteenth juror" when they feel it's necessary, and intervene in the matter in which he has.  Read more here. I don't know enough about the law to comment on whether he's got a legal leg to stand on with his first point, and I didn't hear Jane's testimony. Perhaps there were inconsistencies in the timeline as she reported that he didn't feel he could ignore. I do think, as I discussed in my last post, I think he really needs to consider that she's a person with an intellectual disability speaking about a highly traumatic event in a very stressful environment.  How much bearing these inconsistencies could actually have on the trial's outcome needs to be considered in light of these facts.

In the end, he did what I preferred he'd do, since he seems to really believe that a new trial is necessary. He did what he felt he had to, and then got out of the way.  And if I believed that he'd done it out of concern for Jane, and not because prosecutor Scott Ballard had criticized him or because he was concerned that people were trying to "judge shop", I could grudgingly respect him for sticking to his principles. But, from what's been reported about his ruling, there's little concern the fact that his ruling is largely built on rape culture tropes and ableism.

And that I can't respect, Judge Christopher McFadden. I expect better from the American legal system.

Sunday, 2 March 2014

Christopher McFadden: What Do We Do When a Judge is Wrong?

There's an update on this story that became available to me just as I was about to post this: Christopher McFadden recused himself from the case late Friday afternoon. The story is here, and I will comment on it this week.

I still wanted to post this. After reading the update, nothing about what I believe about this story has changed, and this one really upset me.

A Facebook friend brought this to my attention on Friday. Let's all welcome Judge Christopher McFadden of Georgia to the blog. I doubt that this will be "one time only" appearance, as I plan on following this story.

The controversy rests on the 2012 trial of Jeffrey Dumas. Dumas was tried for raping a woman with Down Syndrome multiple times in 2010. She was 24 at the time, staying with family friends while her parents were out of town. Dumas visited the friends' residence and, according to the woman's testimony and to physical evidence, raped her three times in the twelve hours that he spent there. He was convicted by a jury and is currently serving 25 years. Christopher McFadden presided over the trial.

And now he has reversed the jury's verdict and called for a new trial.

Wow.

Just a note before I get into this that for the sake of simplicity, I'm only going to talk about women and rape in this post. But I've not forgotten (and no one should ever forget) that men get raped, too. The statistic that I found in my go-to essay on rape culture (I'll talk about that later) said that the number is 1 in 33, and that was in 2009.

Let's unpack this. The woman's name is not mentioned in the media. I'll call her Jane, instead of "the woman".

Christopher McFadden's Concerns


Christopher McFadden apparently has some concerns with discrepancies in some witness testimony, the specifics of which I haven't been able to find in the media. If he's so concerned by these discrepancies that he feels that they affected the outcome of the original trial, then it's my understanding that overturning the jury's decision is a step, albeit one almost never taken by trial judges, that's within his judicial power to take.

The media is giving those concerns only a passing mention, however, if mentioning them at all. And, in my opinion, he'd better be pretty damn sure that they're worth giving a convicted rapist a new trial over.

Because Christopher McFadden hasn't got a leg to stand on legally about anything else that concerns him about this trial, and needs to be called out properly on it.

You see, Christopher McFadden also believes that a new trial is necessary because Jane didn't "act like a victim" and Dumas didn't "like someone who had recently perpetrated a series of violent crimes".

Welcome to living in rape culture in America, folks.

A Lesson in Rape Culture for Christopher McFadden


When I'm talking with people about rape culture, I refer them to Melissa McEwan's excellent essay on the topic. For anyone who wants to understand how truly scarily pervasive rape culture is, how it thoroughly saturates our culture and keeps both women and men at risk, McEwan's website, shakesville.com, is an excellent resource.

Christopher McFadden wonders if what happened to Jane is truly rape, apparently, given that her testimony that the rapes happened over a twelve hour period and she waited until the next day to report them. He posits that she had plenty of plenty of time and opportunity to report what was happening her caregivers and to ask for help before she did so.

Let's let Melissa take this one:
"Rape culture is the pervasive narrative that there is a "typical" way to behave after being raped, instead of the acknowledgment that responses to rape are as varied as its victims, that, immediately following a rape, some women go into shock; some are lucid; some are angry; some are ashamed; some are stoic; some are erratic; some want to report it; some don't; some will act out; some will crawl inside themselves; some will have healthy sex lives; some never will again."

The fact that every woman reacts differently to rape isn't ground-breaking news. Anyone who works with rape victims will tell you that. But this is the power of rape culture.

Or ignorance from a highly-educated individual of one of the most very basic elements of personal aftermath after a rape.

Or both.

In any case, it's first-order victim-blaming, and a judge should know better.

And by the way, what *does* a man who has just raped woman 3 times behave like? What is he *supposed* to behave like? Why does this matter, when the jury found that the physical evidence supported that Dumas raped Jane?

Fayette County State Attorney Scott Ballard, who prosecuted this case, reacted to Christopher McFadden's ruling with "disgust".  After reading Christopher McFadden's ruling,  the District's Attorney's office filed a motion asking him to recuse himself from the case, but he denied the motion.  The motion is being appealed (to the same appeals court that McFadden sits on.)

Obviously Christopher McFadden's attitudes about rape would be problematic (to say the least!) regardless of whether the woman was disabled. But the fact that this woman is makes all this an issue of ableism as well, as Jane has Down Syndrome.


The Ableism Issues


If Christopher McFadden feels that discrepancies in witness testimony actually are significant enough to call for a new trial, that's one thing. But this "she didn't act like a victim" nonsense is especially unfair for a woman with an intellectual disability who, depending on her level of understanding, education and experience, may have a very limited understanding of how people "act" after consensual sex, let alone rape. There's still a perception out there that disabled people, especially when the disability is intellectual, aren't sexual beings, and don't need education about sexuality, sexual relationships, and sexual safety.

I have no idea about Jane's particular situation, of course. But, unless these issues were explored in the original trial, Christopher McFadden is assuming that she would even be clear after the initial rape that what had happened to her was wrong or why. After all, even some women who aren't facing the challenges inherent in having an intellectual disability sometimes aren't sure after an assault that what's happened to them was rape.

These are factors that need to be considered by the entire support team helping a woman with an intellectual disability work her way through the issues involved with a rape, including the judge if the case goes to trial.

The evidence doesn't seem to point to Christopher McFadden having awareness of these issues. I could be wrong, but I'm willing to bet that I'm not.

I'm also asking myself if this idea of "she didn't act like a victim" isn't somehow tied in to assumptions about people with an intellectual disability. I don't think it's an unfair question, although I'm sure we'll never know the answer.

But ultimately it doesn't matter whether Jane is disabled or not, does it?


Meet Me at Camera Three, Judge Christopher McFadden


I'm just sick about your ruling.

Not just because it means that a woman with Down Syndrome will have to go through a trial again, when the man charged with raping her was found guilty, when she she thought that he would stay behind bars for 25 years.

Because a *woman* will have to will to go through a trial again, when the man charged with  raping her was found guilty, when she thought that he would stay behind bars for 25 years.

Some of the articles about this don't even mention that you had concerns about testimony. All of them mention that this is happening because you didn't think that Jane acted enough like a victim. This not only demonstrates ignorance on a basic level of how women react to being raped, it's an affront to rape victims everywhere. You ignorance is revictimizing this woman, and further proves that in a rape trial, the victim is just as much on trial as the rapist. Her sexual history is used against her. The way she dresses is used against her. And now, the way she acts after the rape is used against her.

And God help her if her rapist doesn't "act" like a rapist.

If you are thoroughly convinced that witness testimony had discrepancies that could have affected the outcome of the original trial (not that I'm buying that), call for the new trial on that basis.

And then recuse yourself! How does this woman have a ghost of a chance in this new trial if you preside?

And yet, when she was told that the trial was going to be reopened, after her tears, she said that she was ready to do this again.

I can't do much for her, but I can make sure that people know what's happening, and get as much support as I can behind her.

Be a responsible judge and a decent human being and don't force yourself into this young woman's life again. She's been violated enough.

This article by Bill Rankin and Steve Visser really helped me to get needed background information and to better understand the legal aspects of what's happening with this case.