Saturday, 31 May 2014

Joe Scarborough Continues to Misinform the Public about Autism

So 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:






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.

Friday, 23 May 2014

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

In 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

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.

Tuesday, 13 May 2014

Michael Mullins Sings National Anthem at Fenway Park - Tough Questions

All 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:

Monday, 5 May 2014

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

I wrote this piece for the blog 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

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

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.