Joe Scarborough Continues to Misinform the Public about Autism

Joe ScarboroughSo Joe Scarborough is at it again.

This marks his second appearance in the blog for passing off his opinions about autism as fact on MSNBC (and, researching this story today, I found out that he’s done it a third time that I missed), and I’m writing about it to add my voice to those that are asking that he please not do it again.

We’ve already got PETA warning people this week about a totally unsubstantiated claim that there’s a link between autism and consumption of dairy products. We don’t need Joe Scarborough expounding on what appears to be a favourite talking point about a supposed link between autism and violent behaviour.

Quite enough of that has been going on since last Friday.

Mass Killings and the Media’s Love Affair with the Autism-Violence “Link”

It’s been just over a week since Elliot Rodger opened fire in Isla Vista, killing 7 people and wounding 13 others. And, of course, the media has been making much of the fact that he was autistic, although some sources are now disputing that he was actually diagnosed; see here and here.

Here are 4 articles from major news sources I found just by doing a quick search, that commented on the fact that Rodger was autistic, implying a link (more strongly in some cases than others) to his violent behaviour:

California killer’s father struggled with money, court documents show

Mental illness in spotlight after UC Santa Barbara rampage

Virgin killer’s parents read his hate-filled manifesto then called police then rushed to stop him when they heard of murder spree on their car radio

Elliot Rodger is Isla Vista drive-by killer

And, of course, Joe Scarborough felt compelled to comment, as he did regarding the gunmen in the Aurora, Colorado movie theatre shooting in 2012 (he stayed blessedly quiet after the Newtown shootings), that Rodger had Asperger’s Syndrome (which now falls under the umbrella of Autism Spectrum Disorders). It makes perfect sense to him to talk about this, as he knows there’s clearly a link between an autism diagnosis and the tendency to commit this sort of violence. He’s done this twice about Elliot Rodger.

Except that the consensus is now that there’s not a link. I’d expect Joe Scarborough to know this, as a media person.

I’d expect that Joe Scarborough would have done his research on this, and that he’d know that scientists no longer put much stock on the studies that originally suggested those findings (see this article for a brief summary of the research). Perhaps he thought that there’s a bandwagon on which to jump at the moment, given that the Washington Post wrote an article recently about a new study suggesting a link, but it’s looking like even that study was flawed.

The research just doesn’t support the idea. But Joe Scarborough wants to keep talking like it does. And it’s important that he stop.

Why is it Important, Joe Scarborough?

I’m not writing about this because I had particularly strong feelings either way about Joe Scarborough or MSNBC before this latest “commentary”. Granted, I wasn’t a huge fan of either. But my cable package doesn’t let me get MSNBC so it’s kind of a moot point. I rarely watch 24-hours news channels these days anyway.

I have strong feelings now. I definitely wouldn’t watch MSNBC, even given the opportunity, as long as they think it’s okay to let this sort of ablism continue to happen on the network.

This is important, Joe Scarborough, because after a highly emotionally charged event like the UCSB shootings, people are upset and hearing selectively. From what I saw and read, the media was a bit better than after Newtown especially about explicitly stating that even though the shooter was autistic, experts didn’t believe that it was a factor in his behaviour, instead of just jumping on the “autism = violence” bandwagon with no qualifying statements. I will give them that. However, people were (are) understandably in shock, and sad…angry, scared, and looking for the “why” behind the event, and in that state, hearing “Elliot Rodger had high-functioning autism” (yes, I’ve seen it put that way, even though using the functioning level label is quickly falling from favour within the disability community…there are sensitivity issues in the coverage for which the media does not get a free pass) is going to stick with them.

Especially when a media figure like Joe Scarborough goes beyond speculation and starts deliberately giving out information based on pseudo-science and/or outdated research. It’s bad enough that 24-hour news networks speculate about the details of a story because they don’t know enough facts yet and they still need to fill time (and regular CNN viewers know that it’s come back to bite that channel in the ass before). It’s quite another to start giving out the wrong information about a group that’s already fighting misinformation campaigns and discrimination when the right information is easily accessible.

It’s unethical and irresponsible on Joe Scarborough’s part, and it’s just another sign of how devalued autistic people truly are in society that MSNBC hasn’t reprimanded him for it, or reprimanded him more publicly, if they did. He did release an “apology” in an off-air statement after pushback after his remarks after the Colorado shootings, but there was nothing on-air.  If he’d started going on, on-air, about an unsubstantiated claim that belonging to a certain race made someone more likely to commit mass violence, I would think (hope) that the network would shut it down promptly and emphatically and require, at the very least, an on-air apology. Certainly two repeat offenses would likely result in the person being fired.

Why is this different? Why has Joe Scarborough gotten away with doing this three times?

Imagine How It Must Feel, Joe Scarborough

I know that the autism witch hunt after these events has gotten to the point where one of the first things I ask myself after hearing about a mass shooting like the one at UCSB is, “I wonder how long it will be before someone asks whether the shooter is/was autistic.”

I’m not autistic, so I can’t understand what it must feel like to know, for autistic people,  that it’s never very long.

I try to think how I’d feel if the question was about an unsubstantiated link between stroke and violent behaviour that the media kept insisting on bringing up, and as someone who would be then be affected by the question, these feelings come to mind:

Dread.

Fear.

Anger.

Helplessness.

Sadness.

It’s a heck of a lot to shoulder. It’d be quite a thing to explain to an autistic child (to any child): “You’re okay…they’re only saying that because they thought at one point that autistic people were more violent than other people. They were wrong about it, but they…can’t let it go.”

Let it Go, Joe Scarborough

Joe Scarborough, no one likes being lied about, especially when those lies are damaging.  If you feel the need to speak about autism in connection to mass shootings, speak about it accurately.

For the sake of your autistic son, if no one else.

With all due respect, I don’t want to have to write about you (at least not in this context) again.

For those interested…

Joe Scarborough’s commentary after the 2012 movie theatre shootings in Aurora, Colorado

Commentary on the “non-apology” and a great interview on the autism-violence “link” with Autism Self-Advocacy Network President Ari Ne’eman and journalist Mike Elk (also after the Aurora shootings)

Joe Scarborough’s first comments after the UCSB shootings – “…he was on the Asperger’s scale – big surprise.”

Joe Scarborough’s most recent comments. The general comments about talking about mental health are spot on – but he brings it back to Asperger’s Syndrome, which he doesn’t feel he can name on the air because of criticism that he’s (rightfully) received in the past after doing so.

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The TALK-SC: Sex Education for People with Intellectual Disabilities

talk-scIn a discussion with friends that came up after I published the posts about Judge Christopher McFadden and his ruling on a case involving the rape of a young woman with Down Syndrome, questions came up about whether she could really consent to sex in the first place.

“Depends on the person,” I said. “It gets complicated.”

I didn’t go into it any further because it *is* complicated, and having to talk about the issues involved with sex and sexual consent in adults with intellectual disabilities is something that’s still relatively new for the field. Society tends to treat adults with intellectual disabilities like they’re children, forgetting that they’re sexual beings with adult sex drives and the same desires as most people to be in romantic relationships. Changes in how we view the rights and responsibilities of adults with intellectual disabilities, and increased opportunities for community involvement and interaction with others, have given them opportunities to explore the world of romantic and sexual relationships that previously weren’t available to them…but have created a need that historically hasn’t been there for education and safety training.

With so many differing attitude in society regarding sexuality, confusion about it among people not facing the challenges associated with an intellectual disability, and discomfort about talking about it general, it’s no wonder that people with intellectual disabilities don’t get information about relationships and safe sexuality that they need and are entitled to.

Which is why I was so excited to hear that disability advocate Dave Hingsburger and a team of of professionals who have worked closely with people with intellectual disabilities in the area of sexuality had developed an assessment that could either be used to determine in what areas an individual needs education about sexuality (and to assess how effective that education was), or to determine (with an appropriate professional’s assistance) whether a person can legally consent to a sexual relationship. It’s called the TALK-SC.

I was very excited to see the TALK-SC. I’ve talked before about how I’ve had to work with individuals to assess their level of knowledge around sex and sexual safety. Getting the required information without prompting or putting words in someone’s mouth is tricky.

I asked Dave if I could blog about the TALK-SC. I really like it, for several reasons:

1. The Person Being Assessed Has to Consent to Having the TALK-SC Done, and Can Revoke the Consent at Any Time

The assessment instructions make it clear that the person is at the centre of this. They are to be informed about what the assessment will be used for, the benefits and risks of taking it (especially in the Consent context, which could result in them not being able to have sex until getting education in some areas of need identified by the TALK-SC; I don’t know enough about this area of support to know how this would be enforced), what they’ll be talking about, who else the assessor will be talking to, and that they can revoke consent at any time. The materials explaining the TALK-SC to the person being assessed, and the consent forms, are wonderfully plain-language. The consent forms in particular are among the best that I’ve seen.

2. The Must-Pass Questions Get to the Core of the Issues

In order to pass for Consent purposes, 6 questions have to be answered correctly, and they nicely get to the heart of the issues around public and private behaviour, consent and safety:

1. a) If someone asks you to take your clothes off do you have to?  b) Why would a doctor ask you to take off your clothes?

2. Two people are having sex. What are their bodies doing?

3. A person wants to have sex with their partner and the partner does not want to.  What are their choices?

4. You are making out (kissing and touching) with your partner, they ask you if they can touch your penis/vulva (“vagina” can be substituted) and you say yes. When they start, you get uncomfortable, can you still say no?

5. You are on the bus and your crotch is itchy, is it okay to pull your pants down to scratch it?  Why or why not?

6. You see someone really sexy in the park and you decide to go to the bushes and start to masturbate. Is this okay? What can happen to you?

These questions are part of the 5 scored modules in the TALK-C. The person must get a 70% score in each TALK-SC module to be deemed to have enough of an understanding of the issues surrounding sexuality to be able to consent to sex.

3. Professionals Are Involved

While a support person (preferably with another support person present) can administer the pre-test portion of the TALK-SC that’s designed to assess a person’s level of knowledge, the post-test (whether it’s being given as part of the process to assess ability to give informed consent, or to re-test knowledge after training) is given by a clinician or someone with experience with sexuality in people with intellectual disabilities.

Thank goodness…especially regarding the consent issue.

I probably could handle giving the TALK-SC, but making the actual ruling on consent isn’t something that someone without considerable knowledge and experience should be doing (my opinion). And it’s much more influence that I personally care to have over anyone’s life, quite frankly. I’m all for keeping people safe, but I have a healthy sense of when something’s outside my knowledge level and skill set, and I don’t like to stretch very far when other people are involved.

Which is why I overcame my initial resistance to the idea that, when conducted to investigate ability to consent, a information-gathering interview is also done with someone close to the person being assessed. I generally don’t like the use of interviews about a person where they are not present as a means of gathering information, although I do recognize that sometimes there is no other alternative. The TALK-SC instructs that the person is to be made aware that this is going to happen, they’re told about the questions that the person will be asked, and can stop the assessment if they’re uncomfortable with an interview being done with others at which they’re not present, so this is really done as ethically as it can be (again, my opinion). And for a decision with potentially far-reaching implications for a person’s life, it makes sense to get as much information about a person’s level of insight about sexuality as possible. Ultimately the ruling around consent is about keeping people safe.

4. Even a Finding That a Person Can’t Consent is Treated as Temporary

The TALK-SC definitely allows for the possibility that people may be found to be in a position where they have to be told that they can’t have sex. However, the TALK-SC is also very firm that this circumstance is to be treated as temporary, pending appropriate education, and that a prohibition on having sex does not mean that a person cannot be in a relationship and hold hands, kiss, etc. It assumes the best in people, and assumes that people can learn and grow. Any sort of support for people with intellectual disabilities should be making these assumptions.

The Importance of Tools Like the TALK-SC

As I said at the beginning of this entry (and as I’ve said several times already in this blog), people with intellectual disabilities have the right to be in romantic relationships and the right to high-quality education about all aspects of being in a romantic relationship, including sexuality and sexual safety. This is a great step forward in that area.

I would assume that any sort of assessment that comes from a team involving Dave Hingsburger would have these assumptions at the centre of it, and be firmly rooted in compassion and deep respect for the people for whom it was developed. The TALK-SC exceeded my expectations. When I first heard about it, I thought, “It’s Dave, so I’m sure it’s going to be great, but I have no idea how he’s going to pull it off,” and I really am impressed by what he and the team have come up with. It is being offered to agencies and advocates free of charge. If you’d like to receive a copy, email Dave Hingsburger at dhingsburger@vitacls.org.

The TALK-SC was developed by Dave Hingsburger, K. Beattie, T. Charbonneau, J. Hoath, S. Ioannou, S. King, S. Loftman, L. Lynn, K. Miller, M. Mudunuru, C. Outhwaite-Salmon, and S. Woodhead, with support from MacKenzie Health, Vita Community Living Services, Angie Nethercott, Patty Barnes and and Joe Jobes.

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Michael Mullins Sings National Anthem at Fenway Park – Tough Questions

michael mullinsAll right, people, prepare yourselves. I’m feeling cranky, and I may sound a little cold-hearted in this post. I don’t mean to come across that way, and I do apologize if that’s the case…but, frankly, I’m okay with it. It’s just my viewpoint, and (as always), you’re welcome to take it for what it’s worth. But I read a news story the other day about Michael Mullins, a man with Down’s Syndrome who recently sang the American national anthem at a baseball game at Boston’s Fenway Park, and it rubbed me in all the wrong ways.

Not because I think it’s wrong that someone with Down Syndrome sang the national anthem at a professional baseball game. Why would it be? Particularly since Michael Mullins does have  a very nice voice. It’s been his dream for almost a decade, apparently, to sing the national anthem before a Red Sox Game at Fenway. He’s been actively campaigning with Fenway staff for the last four years for the chance to do it.

Here’s my issue: Plenty of people who since very nicely would also love the chance to sing the national anthem at a Fenway game, and wouldn’t get anywhere near the top of the list of the people being considered for that privilege, even after four decades of campaigning for it. I suspect that Michael Mullins got the chance more because he’s disabled than because of the quality of his voice.

Voice quality was probably a factor. Just not likely the deciding one.

That’s problematic to me.

Did Michael Mullins Agree to “Raise Awareness”?

The video of Michael Mullins singing was uploaded with the following caption:

This video literally captures a dream coming true as Mike raises awareness for adults with disabilities while showcasing his amazing singing ability. Please share this video to raise more awareness and promote an amazing dream coming true.

I’ve got dreams, too. I’d love work with Jon Stewart as a writer for “The Daily Show”. But not because me having that job raises stroke awareness, or because there’s a perception that because I’m disabled, that makes whatever writing gifts I do have especially amazing. Or because, as a disabled person, my life must be so difficult that I’m more deserving of a chance than other folks than having that dream come true. All things considered, even my post-stroke life’s been pretty cushy. If we’re going to start out “Your dream’s coming true” cards to people on the basis of how great the challenges are that they face in life, plenty of people (disabled and non-disabled) should be in line for one ahead of me.

I’d rather get the job on my own steam, thanks.

I know nothing about Michael Mullins. I imagine that his life’s been difficult in some ways…perhaps many ways. Maybe he’s been had some of those raw deals that make me wonder how people go on – I have no idea.  And maybe he agreed that singing at Fenway would be a great chance to raise awareness about disabilities, and didn’t mind that the opportunity came along with the obligation to be an “automatic activist“.  It’s possible. The media paints a story, however, of him just being happy to sing, not one of wanting to be an ambassador for the disabled community.

The Importance of Treating Michael Mullins Like an Adult

What really made me uncomfortable about this story was that it struck me as a “Make-A-Wish” story – a story of a child getting an opportunity that they wouldn’t normally, being to live out a dream, as respite from the harsh and ongoing realities associated with life-threatening illness. We know that these kids wouldn’t normally be selected for the opportunity in question, but it’s their dream, and the kids have been through a lot, and who’s going to begrudge a child the fulfillment of a dream when he or she may not make it adulthood and have a chance to make that dream come true on his or her own steam?   I understand (and have always supported) the Make-A-Wish foundation’s mission.

But Michael Mullins isn’t dying, and he’s an adult. As an intellectually disabled adult, there’s a high likelihood that he often gets treated like a child – we see flashes of that in the way that both Fenway and the media talked about him – but he’s an adult nonetheless. If this story wasn’t about a disabled person, I’d bet that the majority of comments on the articles that I looked at (for example, here and here) would be along the lines of, “What makes him/her so special?” instead of, “Fabulous job!” and “Had to skip through so I wouldn’t start crying at work.”

I did consider that Michael Mullins was singing the National Anthem for a game that had been designated to promote awareness for a disability or a disability agency, in which case it would make some sense that they’d choose a disabled person for the job. I used to attend the annual Community Living Blue Jays Game at the Roger’s Dome each year, and a disabled person sang the anthem. Fair enough. That makes sense to me. But that’s not the case here, as far as I can see.

And I can’t recall that the singer at those games was ever introduced as “inspirational”, or a list of their supports being rhymed off into their introduction:

And here to perform our national anthem is an inspirational young man. He is a member of the Michael Lisnow Respite Center, which provides emotional and physical support for people with disabilities and their families. Put your hands together for Michael Mullins.”

Regular readers know how I feel about the word “inspirational” and disabled people. And while there’s nothing wrong with attending a respite center (and the announcer may have been following a convention of putting the singer’s name at the end of the introduction), his disability had to be the focus, even before his name?  There was nothing else that they could have emphasized, like the fact that he’s been singing the national anthem at local community and sporting events in Hopkinton (where he lives) for years?

As for my gripe with the media, it was about a quote in this article, where Michael Mullins is describing his family’s reaction to the news that he’d be singing at Fenway.

My brother started crying,” he said. (Mullins wouldn’t admit to it, but the staff at the center said he was a little teary eyed as well.)

If Michael Mullins wouldn’t admit to it, he probably didn’t want people to know, reporter Jonathon Phelps. Was it really respectful, in this context, to print what the staff said about his reaction when he wouldn’t admit to it himself?

Like I said, we need to treat to Michael Mullins like the adult that he is.

Michael Mullins – Things to Consider

For the record, I don’t blame Michael Mullins one bit for taking this opportunity when it was offered to him. This was his dream. As far as he was concerned, he and staff at the respite house had been working toward it for years – talking to Fenway, organizing the Facebook petition, practicing. And I don’t for a moment think that the staff or Michael Mullins’ family meant any harm – they were simply trying to make a dream come true for a young man.

But I think that the staff in particular needs to ask themselves what he’s taken from this experience, and what the community’s taken from it.

Did it advance the causes of equality and community inclusion?

Or did it “other” a disabled man (and potentially disabled people generally, by extension) even more so than he already was?

I know what I’d say. But, as I said, I’m feeling cranky.

All that being said, however – Michael did give a lovely performance, and you should check it out:

 

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Cry Me a River, Katrina Percy – Justice for LB!

lbI wrote this piece for the blog 107daysofaction.wordpress.com recently. I asked for permission to reprint it here to help raise awareness on this side of the Atlantic about the story. If you’d like to get involved with Justice for LB and 107 Days of Action, please click here


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I’ve recently been made aware of the story of the death of a young autistic man in the UK that’s not getting any press that I’m aware of in the U.S. or Canada. I’d like to tell you Connor Sparrowhawk’s story.

Connor Sparrowhawk, known as “Laughing Boy” or “LB” to his friends and family, was autistic and, from what I can gather, intellectually disabled (it’s difficult to tell when going by British sources sometimes, as they tend to refer to what North Americans call “intellectual disabilities” as “learning disabilities”).  He also had epilepsy. In an interview with BBC radio, LB’s mother, Sara Siobhan, talks about how when her son turned 18, his normally happy disposition changed:

“When he turned 18 in November, his behaviour sort of…he become very unhappy and anxious. And over the space of those 5 or 6 months, he became increasingly sot of unpredictable in his actions and very unlike himself, and he became very difficult for us to manage. We couldn’t get any help to look after him in school, really, and we were struggling to keep him in school.”

LB punched a teacher’s assistant and became increasingly unsettled. The family felt that they had no choice but to send him to Slade House, a small treatment and assessment facility (seven beds) run by Southern Health NHS Foundation trust.

Sara talked to the BBC about her hopes that the staff at Slade House would be able to figure out what was causing the changes in their son, and that they’d be provided with strategies to manage his anxiety and unhappiness. She feels that Slade House did very little to help either way. But if only that had been the worst of it.

LB was in Slade House for 107 days before he died on July 4, 2013. Sara got the phone call at work from a staff member when LB was on the way to to the hospital, she told the BBC. He’d been having a bath, and been found unconscious. Sara was told when she reached the hospital that doctors weren’t able to revive him.

The portmortem showed that LB had drowned, likely as a result of having a seizure, and was originally declared a death by natural causes by Southern Health NHS trust. However, an independent report found reasons to conclude otherwise, as indicated in this summary of the report’s findings on bindmans.com:

The report, completed by the independent organization Verita, investigated LB’s death and found the following:

  1. That LB’s death was preventable
  2. That there were significant failings in his care and treatment
  3. That the failure of staff to respond to and appropriately risk assess LB’’s epilepsy led to a series of poor decisions around his care
  4. That the level of observations in place at bath time was unsafe and failed to safeguard LB
  5. That if a safe observation process had been put in place and LB had been appropriately supervised in the bath, he would not have died on 4 July 2013
  6. That the STATT unit lacked effective clinical leadership
  7. That there had been no comprehensive care plan in place for the management of LB’s epilepsy and his epilepsy was not considered as part of his risk assessment, in breach of NICE epilepsy guidance

The report follows another, highly critical CQC inspection report published in December 2013 in which the STATT unit failed on all 10 essential standards of quality and safety. Since that inspection report, the unit has been closed to new admissions.

Wow. Doesn’t seem to me like there’s much for the NHS to do but to try to determine what adequate compensation is in this situation (as if there is such a thing, when the death a loved one is involved), determine who was responsible and to what extent, “clean house” of those who were responsible, and commit to reviewing all the policies and procedures that may have contributed to LB’s death…and actually do so, of course.

But these things rarely happen that simply.

Justice for LB!

There’s not enough space today to get into the ways that justice has been put off for LB and his family, although Sara documents it all very well herself in her blog. Even a small facility like Slade House can be just as destructive as the larger warehouse-like institutions that are falling out of favour. It’s all a matter of attitudes and workplace culture. And like most stories involving professional misconduct in an institutional setting, this one gets uglier the more you find out about it.

I’d like to single out one person in particular.

Katrina Percy, chief executive of the Southern Health NHS Trust, doesn’t see why she should resign over this. After all, she’s apologized. She laments the lack of a “culture where people are able to be open when things don’t go as well as they possibly could.”

Cry me a river, Katrina Percy. That might go over if, after careful preparation and planning, LB had tried to go somewhere independently and gotten on the wrong bus to come home (he apparently loved buses). It doesn’t cut it even remotely when a young man with with multiple disabilities and epilepsy dies in the bathtub after a seizure because a medical unit (which turned out to be unsafe for patients anyway) for which you are ultimately responsible left huge gaps in both his care plan and its policies around observation during bath-time. And you don’t get to slam the family with vague comments about “people” not being “open” because you don’t want to take responsibility for this (or for the other two Southern Health facilities subsequently found to have safety failings after Slade House was investigated).

But then, as Chris Hatton has observed, all’s really not been well at Southern Health for the last while, has it? Quite sketchy indeed, Katrina Percy.

It never should have been acceptable for anything like this to happen, but isn’t the era where families couldn’t trust institutional care to meet the basic safety needs of their loved ones supposed to be over? Aren’t we supposed to know better, and act out of a ethos that demands we treat vulnerable people with dignity, and compassionate, responsible, reliable care?

I’m thinking about all the places that I’ve covered in this blog where people got hurt or died because disabled people were considered expendable and just given the absolute minimum of care. The abuses at Huronia Regional Health Centre in Ontario, Canada, happened a long time ago…Willowbrook State School in Long Island been closed for decades…but the New York State group home scandal broke soon after I started this blog in 2011, and the men profiled in the New York Times’ recent “The ‘Boys’ in the Bunkhouse” piece were only removed in 2009 from a horribly abuse group home/sheltered workshop situation that went on for decades.

This must stop.

The next time someone tells you that disabled people aren’t at risk in our society, ask them what they think it would feel like to have a seizure in bathtub full of water and not be able to call out for help.

I know that it’s something that I don’t want to think about.


 

107 Days of Action added this update when they published this piece on April 24, 2014:

Sarah’s thoughts have become even more topical in light of Katrina Percy’s ‘performance’ at the Oxfordshire Learning Disability Partnership Board. See Gail’s brilliant blog posts on this meeting Dinosaurs and Elephants in the Room and How things could have been…and the float that sank.

Then yesterday KP faced more media attention after yet another critical report and a warning notice from CQC, and Monitor announcing they are taking enforcement action against Southern Health. You can read Sara’s latest post, Love tennis in health (and social care) towers, for her thoughts on this latest development.

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Judge Rotenberg Center Should Have Shocks Banned – FDA Panel

judge rotenberg centerThursday, April 24, was a day that I’d been waiting for that day for a long time. An FDA advisory panel finally got to thoroughly hear both sides of the story of what goes on at the Judge Rotenberg Center, and to deliberate, based on testimony, whether what happens to the students there needs to be stopped.

And they made the right decision. I just hope that they act on it quickly.

Regular readers may remember that the Judge Rotenberg Center has come up a number of times in this blog, usually in posts talking about terrible ways in which disabled people still get treated by society. It got its first mention in its own blog post, in 2012. I remember reading the article prompting it and thinking, “For the love of all that’s holy…these people give autistic children electrical shocks and call it “treatment?”

“Why hasn’t someone done something about this?”

Judge Rotenberg Centre Faces the FDA

Although disturbing accounts of use of four-point restraint boards, isolation, and food deprivation as discipline techniques have from former Judge Rotenberg Center students, most of the controversy around Judge Rotenberg Center revolves around the use of their Graduated Electronic Decelerators to deliver aversive shock therapy. Aversive shocks, unlike the electroshock therapy used to treat mental conditions like severe depression, are delivered to the skin. A statement from the Judge Rotenberg Center said that the two-second shock, usually delivered to the arms or legs, “feels like a hard pinch but is otherwise harmless and has no side effects.”

Former students, however, have told a different story. One former student described the shocks as feeling like “a thousand bees stinging you in the same place for a few seconds.” Another described flashbacks and nightmares that she has about the shock treatment. The report I linked to at the beginning of this section contains many more accounts of the physical and emotional trauma that the aversive shock therapy has caused.

Gregory Miller, a former teacher’s assistant at Judge Rotenberg Center, left because because of the pain his students were in. The Judge Rotenberg Center received FDA permission in the 1990s to use the GEDs,  but, according to Miller, at least one of the machines, the GED-4, was not FDA-approved. Media accounts (see here and here) support this. The GEDs at the Judge Rotenberg Center are illegally modified to deliver shocks up to three times greater than the FDA-approved limit. The FDA sent them a warning letter about this in 2012.

Had he known that units at Judge Rotenberg Center weren’t FDA-approved, Miller says, he would not have used them on students, despite the treatment plans calling for their use. Lydia Brown has Miller’s letter to the FDA posted on her blog, with his permission (she suggests first reading this letter, from a former Judge Rotenberg Center student, also posted with permission.) Both letters are very difficult to read, but show the disturbing scope of what’s going on behind the walls of this “school”.

Judge Rotenberg Center: The Supporters Speak Up

Supporters of aversive shock therapy, currently available in no other US facility but Judge Rotenberg Center, have said that it’s helped where all other treatments have failed. Parents testified about children in great distress, constantly engaging in self-injurious behaviours like headbanging and eye-gouging, how medicines weren’t working, how restraint was no longer an option. The Judge Rotenberg Center said in a statement:

“Without the treatment program at JRC, these children and adults would be condemned to lives of pain by self-inflicted mutilation, psychotropic drugs, isolation, restraint and institutionalization — or even death,”

But  I tend to agree with Margaret Nygren on this one.  The Executive Director for the American Association on Intellectual and Developmental Disabilities told CBS in an interview that studies have shown that the aversive shocks aren’t going to help in the long run. As soon as the negative reinforcement is removed, the behaviour returns.  Given everything that we know now about the intense frustration involved with not being able to communicate needs as simple as “I’m hungry” or “I’m in pain”, there’s no reason to continue a practice that, more and more, is being shown that it causes more harm than good and that doesn’t work in the long run anyway (see this article for more explanation).  As Nygren explains, we have to concentrate on getting to the root causes of behaviours, concentrate on communicating more effectively, and provide those that can’t communicate using in ways that we’ve traditionally been able to understand ways of effectively doing so.

It’s more work than using a GED. But I’d hope that people educating disabled children would want to do the work. I’d hope that people who said that they had children’s best interests at heart would not *want* to torture them.

Besides, there’s shocking students who are putting themselves and others in danger for when nothing else (apparently) works, and then there’s this:

“But the student told the FDA he received shocks “for things like noncompliance with staff direction, talking too much and being disruptive in class.”

Other former students testified that they also were shocked for minor transgressions. That’s not about keeping people safe. Cheryl McCollins, whose son Andre was shocked 31 times in the course of 7 hours, at Judge Rottenberg Center, at first for just refusing to take off his coat, said it best: “This is not about therapy. This about control, abuse and torture.”

Bottom line? Find another job if you think that giving electrical shocks in the face of “noncompliance” is acceptable, because you don’t belong in one where you have any access to children or members of other vulnerable groups.

Judge Rotenberg Center: Why Has This Been Allowed to Continue?

I clearly remember from my research methods classes that I took for my Psychology degree and the Behaviour Management classes that I took for my Developmental Services Worker certification that there are some things that you just don’t do, in the name of either, to humans (or animals, for that matter). I doubt that most ethics boards would let you get away with research involving shocking most animals, let alone humans, to see how it made them behave, not in this day and age. Judge Rotenberg Center has even admitted that they can’t test the GEDs as much as they’d like because of ethical concerns. So there are no ethical concerns with using equipment that hasn’t been tested as fully as they’d like on children and youth that, in some cases, can’t even clearly communicate how they feel about what’s being done to them? L.A. Markham discusses some of the other implications of this position in her article about the Judge Rotenberg Center.

This may have started off with the best of intentions, but it’s gotten seriously out of hand, under the watch of people who are supposed to be looking out for the best interest of the students at Judge Rotenberg Centre in particular, but also the safety and human rights of children in general, and despite the efforts of politicians like Massachusetts Governor Deval Patrick and Senators Brian Joyce and Tom Sannicandro. Even the UN has weighed in, declaring the use of the GEDs torture.  And yet, use of the GEDs still hasn’t been outright banned.

Why not? If non-disabled kids in a public school were being shocked into submission, people would (rightly) raise ten kinds of hell. You can count on it.

The only reason that I can think of for why this abuse has gone on for so long is that these are disabled kids and, and that when people hear that receiving an electrical shock is the “only way” to get a disabled child to behave, they accept it as a reality that can’t and shouldn’t be questioned. A sad reality, yes. But just the way it is, the way that people used to think that disabled people belonged in institutions because “that’s just the way it is.” And *that* idea really scares me, because it tells me that society hasn’t changed its view of developmentally disabled people all that much since those days. It’s easy to understand why Goodwill got away with paying disabled people pennies an hour to work for so long, considering that a school that purports to be devoted to the well-being of disabled children thinks that electrical shock as a behaviour management tool is acceptable.

As I said, the advisory panel made the right decision. They will recommend to the FDA that the GEDs be banned.

Let’s hope that everyone involved here does the right thing and makes it a reality.

FDA Summary of the April 24 Hearing

Greg Miller’s Petition to Make Aversive Shocks Illegal – Please sign!

 

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Thoughts on Disney’s Disability Access Service Card (Or, Why it Sometimes Sucks to Be Disabled)

disability service access cardIn the last post that I wrote about Disney’s new Disability Access Service Card, I said that it was receiving, at best, mixed reviews. Well, the chickens have come home to roost on that. Sixteen families of children and youth with developmental disabilities (including autistic children) are now suing Disney on the grounds that the new Disability Access Service Card regulations aren’t ADA-compliant.  And I don’t think that there’s really much to say about this except that sometimes, as positive as I try to stay about my situation, it really does suck to be disabled. I think it must especially suck for children.

The Disability Access Service Card: The Complaints

I thought hard about what I wanted to say about this. It’s a tough situation.

The Disability Access Service Card’s older equivalent allowed families with members who were unable, due to disability, to handle waiting in line the option to move to the front of the ride lines. It was being abused, however, by families that hired a disabled person to accompany them to Disney parks in order to avoid waiting in line. The current Disability Access Service Card lets families schedule a time to go on a ride, depending on current wait times, so that they don’t have to physically stand in line. However, they can only have a return time to one ride scheduled at a time, and the disabled person must be with the group in order for everyone to ride.

For autistic children especially, the Disability Access Service Card has been causing more issues than it solves. Disabilityscoop.com outlines why some of the parents involved in the lawsuit have found the Disability Access Service Card policies especially problematic:

In the suit, a mother known as M.B. alleges that she waited in line for an hour and a half to receive a Disability Access Service Card for her 6-year-old with autism who is referred to in court documents as A.B. Even though she offered park officials medical documentation about her child’s inability to tolerate waits, the mother says she was given no choice but to schedule a return time at “It’s a Small World” which A.B. wanted to ride repeatedly. After riding twice, A.B. faced another hour-and-fifteen-minute wait and entered a “full-fledged meltdown,” the lawsuit alleges.

In a separate case, the suit indicates that a mother known as L.C. tried to take her 7-year-old with autism, referred to as J.C., to Disney World several times since the new policy took effect. L.C. said her child has had multiple meltdowns after learning of wait times to ride “Peter Pan” and “Winnie the Pooh,” with J.C. falling to the ground or jumping up and down with arms spinning around. As a result, L.C. is no longer taking her child to Disney parks and does not plan to renew the family’s annual passes.

As always, the comments on the article on telling. Some parents whole-heartedly support the lawsuit, and tell their own stories of how Disney’s Disability Access Service Card is doing exactly the opposite of what it’s supposed to be doing. Others talk about how Disney couldn’t do enough to accommodate the needs of their disabled child. And others talk about how parents who expect that their disabled children should always be able to go to the front of the line don’t want equality, but special treatment.

I addressed the last concern when I last blogged about the Disability Access Service Card, when I talked about how equality doesn’t always mean that everyone gets treated the same way…it means that everyone gets equal access to what they need to be successful. And if “success” is a fun day for a disabled child with a minimum amount of stress for them, and decreased time in line is something that’s needed for that to happen, then there should be a way to facilitate that. I think that parents were hoping that the Disability Access Service Card was still going to allow them to avoid problematic line-ups.

I do see where other parents are coming from as well, though. The list of developmental disabilities that could potentially cause difficult-to-manage behaviours that might be exacerbated by the limitations of the Disability Access Service Card is quite long, depending on how a disability manifests in a given child at a given time: Attention Deficit Disorder, Fetal Alcohol Syndrome, Oppositional Defiant Disorder (lots of “disorder” talk there, please excuse me; diagnostic language is bad for this), plus any number of mental conditions, none of which are a child’s fault. But when there are a whole whack of kids who (legitimately) *always* get to go to the front of the line, there are also always a whole whack of kids who are also going to always have to wait longer.

Is that the disabled kids’ problem? No. Their needs are not their fault. But it’s not also particularly fair to non-disabled kids and their families, either.

There really is no easy way to make things fair for both groups, and I think that the Disability Access Service Card does represent efforts on Disney’s part to level the playing field for everyone. What they’ve come up with one this first shot at the Disability Access Service Card probably isn’t the best answer.

But this *is* just the first shot.

The Disability Access Service Card: Things to Consider

Which I know means very little if you’re in the group that’s actually being affected by all this. The unfortunate thing for these disabled children, who deserve a wonderful day at Disney World or Disneyland just as much as any other child, is that we’re still at a period in history where we’re learning about disability rights, accessibility, and accommodation by seeing what hasn’t worked in the very recent past and improving on it using a body of knowledge that’s still very much in development. It wasn’t so long ago that society thought the “right thing” to do with disabled children was to tell their parents, “Put them in an institution and forget about them”, and in some respects we still haven’t come very far. We learn as we go along, and while it would be awesome to be able to perceive an issue, snap our fingers, and say, “Hey, taken care of! Attitudes altered, policies changed, loose ends tucked up, all neat and tidy!”, it doesn’t work that way.

It takes time, and dialogue, and a step forward and two steps back. And sometimes an infinite amount of patience. And I believe that it really does take the assumption of good intentions. Maybe not every employee at every Disney park is perfectly modelling attitudes of inclusiveness and accommodation (and when discrimination happens, people need to report it, and Disney needs to build trust with its customer base by dealing with it in a timely and appropriate manner), but I don’t believe, as these lawsuits allege, that there’s a plot afoot within the Disney corporation to purge the parks of autistic children. If I did, then I’d be calling for a very different discussion, and probably paying very little attention to this Disability Access Service Card.

(And if disabled children were being abused or dying at the hands of Disney in their parks, then everything that I said about having to live with the fact that this process taking time and patience and the assumption of good intentions goes out the window. But that’s not what’s happening here, thank God.)

I concede that it’s possible that Disney is being run by heinously ableist people. I’ve never seen any conclusive evidence of that, and don’t figure that the public ever would, should it be the case – the people that run Disney are simply too business-savvy to let the corporation be seen in that light.  Disney doesn’t like negative press, including people who talk about being discriminated on the basis on disability in the theme parks. I think that Disney will refine the Disability Access Service Card as it learns what does and doesn’t work, despite its stance on the lawsuit that it’s already fully complying with ADA regulations. Politicians may not be aware that disabled people want to travel, and will return to places that accommodate their needs and make them feel welcome, but you can bet that the head people at Disney are aware of it. They can’t afford not to be.

Again, cold comfort to the people who have to put up with an organization with lots of money and resources just “learning as it goes”.

The Disability Access Card: Sometimes Disability Sucks

I like to stay positive, and I don’t say things like, “Disability sucks” very often. But yeah, it does suck that disabled children leave Disney World and Disney Land having had a bad experience, just because true inclusion is a goal that even huge companies with lots of money still struggle to reach…or often even understand. That’d be a hard thing for any kid to understand. How does a parent explain to a child, “They couldn’t handle your needs very well, so we may go somewhere else for vacation from now on, or maybe we’ll go when you’re a bit older…” when Disney World is the only place that child wants to go?

I’m not a parent who’s been hoping, hoping, hoping that Disney World was going to be the place where I could have a family vacation, complete with my disabled child. I could see how it would be…very difficult.

The bright side is that, as far as I know, a whole lot of people have survived without ever visiting  a Disney theme park, or only going once. I only went once. It was cold, colder than the Toronto climate that we’d left. My parents hated Florida and vowed never to go back. My sister and I turned out just fine. (Well, arguably fine. Mostly fine, I think).

An easy decision for my parents…maybe not so easy for these parents that are suing. Again, I don’t presume to know.

There are just lots of things to consider here before jumping to lawsuit territory, I believe. The money spent on a trial could buy a lot of kick-ass vacation in places that are very committed to accessibility and to making sure that guests of all ages can participate in all activities.  (Check out the website for Hasquila Amazon Lodge…jungle fun in the only accessible lodge in Ecuador!)

As usual, there are no easy answers. I don’t know why I expected that there would be.

 

 

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Thoughts About Disability Awareness Days

disability awareness daysSo, a disability awareness day came and went this week: World Autism Awareness Day, on April 2.  My Facebook feed was lit up with pictures of city landmarks bathed in blue light, and autism-themed memes, and pictures of friends’ autistic loved ones.

I didn’t write anything this year, or post anything on the Facebook page, or even tweet anything, as I have in past years. The first year I had this blog up, I think I wrote a post for *every* disability awareness day…or week…or month. On Autism Awareness Day this year, I had a terrible headache and was just trying to get through the day, or I probably would have at least put something on my Twitter feed and the Facebook page.

But I don’t think I would have written a blog post.

Call me cynical, but disability awareness days in general are starting to leave me a little cold.

Disability Awareness Days Preach to the Converted

It’s not that I don’t think that disability awareness days in general are a good idea, and it’s always effective, particularly on social media, to see large numbers of people posting in support of something. But I think that people have become remarkably good at tuning out what isn’t personally relevant to them (even if it’s all over social media campaigns or right in front of their face, like the CN Tower being lit blue) and if autism is something personally relevant to them, chances are that they’ve already investigated it.

With one exception, which I’ll talk about in a moment, the people that posted, and liked, the autism awareness messages on my Facebook feed were people with autistic loved ones. I’ve seen the same thing happen for Down Syndrome Awareness Day, a variety of stroke awareness days, and other disability awareness days. It all feels very within-community and insular.

Disability Awareness Days Are One Day a Year

In addition, the “like”, “share”, and “retweet” ease of social media, combined with the one-day-a-year focus of disability awareness days encourages a passive, shallow activism in those that want to support a cause, but don’t really want to *do* anything.

I know very few of these people, by the way. The disability activists that I know and admire are utilizing social media to augment and draw attention to activist action in the offline world that frequently leaves me amazed. Their efforts make my own look utterly insignificant. I’d call them out by name, but they’d be embarrassed.

I’m talking about people that “like” something that goes by on their Facebook feed because it makes them look like they’re a socially responsible person, and then don’t give another thought. I used to be one of them about international news when I was in university. Someone would ask me, “Isn’t it terrible what’s happening in…?” and, wanting to appear socially aware and worldly, I’d emphatically agree, having no idea what they were talking about.

I wonder now if those people were actually onto me, and thought, “So what are you going to do about it?”, the way I think sometimes when I see a lot of likes and comments on a disability awareness day post. I think it’s a question that we all need to ask ourselves, as disability advocates, to keep ourselves honest.

When a disability awareness day is over, what are we going to do about it? Forget about it for another year? Or work to keep awareness up all year and positive change happening?

I’m not saying that everyone who supports a disability awareness day has to become a warrior for that cause. The exception on my Facebook feed that I mentioned earlier, which I really liked, was a picture that a friend had shared of two autistic young people in her church (presumably with their permission). She simply said that she wanted to show support on Autism Awareness Day for two young autistic people that she was really enjoying getting to know.

That simple, positive message, that autistic people contribute to relationships, is a very powerful disability awareness day message.

Speaking of messaging…

The good thing about disability awareness days is that they’re a chance to send a powerful, concentrated message to society about disabilities. And the bad thing about disability awareness days is that they’re a chance to send a powerful, concentrated message to society about disabilities. If the message is slanted toward the medical model’s stance that disability is biological and and a “sickness” that needs curing, that has implications for what the disability rights movement is trying to achieve. It’s so easy to set ourselves back, practically without realizing it.

And if people dispute that medical model rhetoric is still out there, or that we need to examine whether the language of disability awareness days contributes (as we should be examining whether the rhetoric of all information sources about disabilities contributes to negative ideas about disability and how disabled people are treated), consider the following:

  • Concerns about low quality of life sometimes prompt doctors to counsel mothers to abort a fetus with Down Syndrome. Also consider the case of AWA, a man with Down Syndrome given a DNR order in a UK hospital that neither he or his family even knew about, let alone consented to.
  • The story of Amelia Rivera, initially denied an organ transplant because of intellectual disability. See also the story of Paul Korby.
  • The cure-slanted rhetoric of organizations such as Autism Speaks. See “I Will Not Light It Up Blue” by Michelle Sutton for a commentary on this as it relates to Autism Awareness Day.

Words are powerful. We need to remember this. We need to make sure that we’re getting the message across that we want to on disability awareness days.

Do I believe That We Need to Do Away with Disability Awareness Days?

No, not necessarily.

Not at this moment, anyway.

I don’t think that, as a tool for engagement with the wider the community, they’re all that effective, but that they can be one part of a strategy for engagement with the wider community to raise awareness of a given disability.  We’re not at that point where people are so familiar with disabilities and the idea that disabled people have more in common with non-disabled people than they do ways in which they differ that we can do away with days that remind people of that…but maybe we need to ask ourselves whether disability awareness days are contributing constructively to getting that message across and, if they’re not, how they better do that.

But I think the goal should be to not have a need for them. It’d be nice to live in a world where we all just recognized that people are different and have different needs, and not have to pathologize that to guide interactions (as in, “He has autism, so I will interact with him this way…”)

Idealistic, yes. But you have to have a dream. :)

World Autism Day kicks off Autism Awareness Month in many countries. What are your thoughts on disability awareness days? Months? Days versus months?

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Vaccination Safety and Autism: An Irritating Debate

vaccination safetyMeasles 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

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

christopher mcfaddenWow 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.

 

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

christopher mcfaddenThere’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.

 

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