Peter Singer – meet Brad Hennefer

The name of Peter Singer is probably familiar to many of the readers of this blog and website. Peter Singer is a bioethicist and tenured professor who teaches bioethics at Princeton University.

Singer (who should not be confused with the Peter Singer at the University of Toronto) made his reputation in Australia before moving here. His books have championed animal rights and made him a popular figure among some in the animal rights movement. Singer is equally renowned for his advocacy of public policies that would allow the killing of disabled infants as well as the killing of cognitively disabled adults.

One of his more notorious passages from his many books deals with his description of why he feels it’s OK to kill an infant with Down syndrome even though it’s not OK to kill a nondisabled infant:

To have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child’s abilities. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player. (emphasis added)

This passage is from Singer’s book Rethinking Life and Death, and the relevant chapter was reprinted in 2000 in Writings on an Ethical Life. Both books are used in colleges and even high schools in ethics courses.

All of which brings me to the topic du jour. Even though I can’t find anything on the site, I’m told that today’s “Good Morning America” had a short piece on high school varsity basketball player Brad Hennefer.

No matter. There’s still an active link to the story from WPVI in New Jersey:

CHERRY HILL, N.J. — A remarkable young athlete has developed a big following.

At first glance, it was just your run of the mill three-pointer in a high school hoops game.

“He comes down with three seconds to go and makes the final shot. It was an amazing shot,” said his dad, Bob Hennefer.

And then you notice, the coach on the opposing team came over to shake the Brad Hennefer’s hand.

“It was unbelievable. He got a standing ovation,” said John Valore, Cherry Hill East coach.

This shot was different. This shot was Brad Hennefer’s first-ever Varsity basket. This shot was something that was never supposed to be in the cards.

“I’m a very good shooter, good behind the black lines,” said Brad.

Life has been tough from the beginning for Brad. Born with Down Syndrome, nothing comes easy or guaranteed.

(Note – Link also gives you access to the video version of the story which includes interviews with both Brad and his father.)

Note – if you investigate this story further, you’ll find that Brad Hennefer is also a Varsity golfer, and considers it his better sport.

I don’t usually cover “inspirational” stories, since the media concentration on the “extraordinary” members of the disability community tends to render the quiet and mundane lives of the rest of us all but invisible. But given the widely-disseminated libel against people with Down syndrome in Singer’s books, giving Brad Hennefer’s story some attention and discussion seemed appropriate.

I can only guess that Brad’s parents and their friends haven’t been exposed to Peter Singer’s evaluations of people with Down syndrome. I’m guessing his books aren’t on the curriculum at Cherry Hill East High School, where Brad excels at sports.

That’s why no one “knew” he would never be able to excel at sports or anything else in life.

Maybe some of Singer’s students should take a field trip to Brad’s high school for an alternative view of the universe and all its possibilities. It would probably be preferable to leave the professor back in the classroom.

For more information on Brad Heffener, you can read this column in the Gloucester County Times. You can also visit the Heffener’s Golf for Life website. –Stephen Drake

Breaking News – Karen McCarron Found Guilty on All Charges

Many of us have been following the murder trial of Karen McCarron. She killed her daughter, 3-year-old Katie McCarron, the day before Mother’s Day in 2006. Katie was autistic.

Many of us were scared that there wouldn’t be an impartial jury. There were real fears that the press coverage in the weeks after the murder contaminated the jury pool with its overwhelming sympathy for the accused killer. Not only that, the suggestion was made that the urge to kill one’s child was common for parents of children with autism and other disabilities.

There’s a critique and description of the press coverage on our website titled “Disability Advocates Call for Restraint and Responsibility in Murder Coverage“.

Luckily, those fears weren’t realized. Here is the news from the trial, issued some 20 minutes ago as I write this:

Karen McCarron guilty
Jury finds woman who killed autistic daughter guilty on all charges
Posted: Thursday, January 17, 2008 at 2:13 p.m.

PEKIN (AP) — Jurors deliberated for nine hours over two days before finding a central Illinois mother guilty of suffocating her autistic daughter.

Thirty-nine-year-old Karen McCarron was taken into custody after Thursday’s
ruling.

Authorities say McCarron killed her 3-year-old daughter with a garbage bag in May 2006. The family lived in Morton.

The charges against her were first-degree murder, obstruction of justice and concealment of a homicide. –Stephen Drake

Addendum: I hope this isn’t a bad omen, but I just got off the phone with the Chicago AP office, which is transmitting its coverage of the trial over the wires. The latest story from them has a very big problem in it. Here’s the most troublesome quote, this one taken from the AP story on the Chicago Tribune website:

In a videotaped confession played during the trial, McCarron told police she could no longer deal with her daughter’s illness. People with autism often struggle to control impulses, and children with autism can be difficult to manage.

What’s implied here is that Katie McCarron was “difficult to manage.” As I pointed out to the AP staffer, testimony from Katie’s father, grandfather and other relatives last week said that she was an easy child to “manage.” Not only that, Karen McCarron hadn’t been raising Katie at all for about 20 months. She was with her only a few days before killing her.

The staffer at the AP conceded these points. All of them.

Let’s hope tomorrow’s story from the AP is free of “blame the victim” references.

Associated Press Goofs on McCarron Coverage – Then Covers its Tracks

Apparently, whoever prepares the final copies at the Associated Press got a little sloppy yesterday.

The Associated Press article that was sent out at 3:25 pm to various outlets probably confused anyone who read it, since the headline contradicted the lead sentence in the article:

Psychiatrist: Mother wasn’t sane when she killed autistic daughter

Jan 15, 2008 @ 03:25 PM
THE ASSOCIATED PRESS

PEKIN – A psychiatrist testifying for the prosecution says a central Illinois woman accused of suffocating her autistic daughter was sane at the time of the 3-year-old’s death. (empasis added)

It looks like this was probably the result of a sloppy “cut and paste” operation. The AP often “recycles” text from one ongoing story into another later story. In this case, it looks like they lifted the previous day’s headline. The day before, an expert witness for the defense did testify that Karen McCarron was insane when she killed Katie McCarron.

Tip to AP – before sending out articles out on the wire it would be a good idea to have someone read the article and make sure the headline and the article actually match.

It looks like the AP caught its goof and has sent out a “fix” to outlets that received the article with the glitchy headline. In almost every case, the offending article now has an appropriate article or the link is now dead. However, here’s one outlet that shows the article as it originally went out.

Guess they didn’t get the memo. –Stephen Drake

Blogging Against Aversives – a little late

Mike Reynolds at uppity disability dot net has been the driving force behind the “blogging against aversives” campaign that began yesterday and is spilling into today.

According to Mike, the Massachusetts legislature is hearing a number of bills aimed at curtailing the use of so-called “aversives” at the Judge Rotenberg Center (JRC).

“Aversives” – for those fortunate people visiting this site who know nothing of such things – is a nice clinical sounding term that hides the harsh reality of practices involving the infliction of pain, deprivation and humiliation to control the behavior of children and adults with various disability labels.

I wrote an entry about a campaign to pursuade the American Psychological Association to condemn these practices, bringing its position into line with its opposition to politically-motivated torture back in October. Sadly and predicably, there has been no useful response from the APA, last I heard.

Professionals like the power they have and are reluctant to yield it, especially to those that the power is focused on. The real issue with “aversives,” they’ll say, is proper oversight and safeguards. But they’ll refuse to draw any clear bright lines in terms of what those “safeguards” should be and what can be declared outright inhumane and unacceptable.

Below is an excerpt from a discussion from bit.listserv.autism in 1995. The person whose publicly available words I’ll be sharing is Tom Linscheid, who introduced himself to the group this way:

While I am new to this list in terms of being an active participant, I have occasionally monitored postings with special interest in the opinions of parents, especially regarding the issue of “aversives”. I was involved in the development of SIBIS and published some of the original research on it as well as the use of contingent electric shock for the treatment of rumination as far back as the 1970s so I have to put my two cents worth on the aversives issue.

Note to readers – the SIBIS was an early shock device that was much less painful than the device currently employed at the JRC.

Exercising this rare opportunity to ask an “authority” on aversives a question in a public forum, I challenged Linscheid (who had talked about the importance of safeguards and professional oversight) if he could give us a professional opinion as to whether a highly publicized incident at the JRC could be justified as “therapeutic.” It involved the delivery of some 5000 shocks to one individual in a 24-hour period. This was his response (Due to some glitch with google groups, this link takes you to the second post in a two-post thread. Simply click on the first post which you can see at the top of the page and you’ll be able to access the original email message):

As to the issue of 5000 shocks in one day and my unwillingness to comment on that and whether “behavioral theory” supports that. Again, behavior analysis as a science is involved with the demonstrations of functional relationships between behavior and environment. Knowledge of behavioral principles can be “applied ” in many forms without changing the theory. Electricity is electricy regardless of how it is used. The relationships between resitence, current flow and voltage are not changed by whether they are applied for good or evil. So again, the question of
5000 shocks in one day is a question of application not of theory.

If the question is, can 5000 shocks a day ever be justified as an application, let us look at a couple of senarios. The first hyothetical situation; the baseline rate of a severe self-injurious behavior is 20,000 per day, when we begin to treat the behavior with contingent electric shock, the rate is 4000 the first hour, then 1000 the second hour and then the behavior does not occur for the remaining 22 hours of that day. I can see where this may be considered acceptable by many, especially if the behavior continues at a very low or zero rate over subsequent days and weeks.

Senario number two. The baseline rate is 5000 per day and once treatment starts there is no change over the course of the entire day and therefore the person receives 5000 shocks. In this situation, continuation of the treatment is not justified because it is not effective.

My point in not commenting on the newspaper article is that I did not know the circumstances of the treatment case, especially as to baseline rates and rate of behavior accross the day. Without this information it would be hard to answer the question of whether the reported number of shocks was justified. If I were the parent of the person described in the first scenario, I would be happy and relieved that my child was no longer engaging in SIB 20,000 times a day, as the parent of the person in the second scenario, I would be dismayed that the treatment didn’t work and that my child had to receive 5000 shocks.

The point is, without the knowledge of baseline rates and rates of behavior during the treatment day, it is not possible, from my point of view, to either support or not support the application of 5000 shocks in one day. If you are opposed to contingent electric shock as a treatment then knowledge of its effectivenss is irrelevant and you will be opposed regardless of details. I do certainly agree that when numerous aversive stimuli are administered in one day, the therapists are accountable for justifying the practice but I do not agree that it is automatically a bad practice – it depends on many factors, not just the number. I hope the above scenarios help to point out why I think such decisions are best left to parents, clinicians and oversight committees and why it is difficult to have a blanket statement about things such as maximum numbers of shocks etc…
(emphasis added)

If you managed to wade through that dry, clinical discussion of the torture of people with disabilities, you’ll find that the answer Dr. Linscheid gave was that there are no absolute standards or prohibitions to be made when it comes to clinical judgment. It’s really not so different from the verbal gymnastics and resistance to oversight when of those who advocate “harsh interrogation techniques.” They share a distaste for the word “torture” and resist clear bright lines regarding acceptable behavior. They also share a belief that basic standards of human rights and decency don’t necessarily apply to all people. –Stephen Drake

Karen McCarron on Trial – Finally

I’ll write more about this later, when I have more physical and emotional energy. Katie McCarron’s alleged murder by her mother the day before Mother’s day in 2006.

Katie McCarron, 3 years old, had autism.

Her death was followed by one of the vilest parade of perfomances I have ever witnessed – by members of the media and by so-called “advocacy” organizations.

Rather than rehashing the history of the coverage and some of the more outrageous behavior by “advocates,” I direct readers of this blog to read the following press release from NDY, issued soon after a second child in the same county was almost killed by her mother:

June 22, 2006 — Today, sad and alarming news emerged from Tazewell County. The Peoria Journal-Star reported that Kellie Waremburg has been charged with the attempted murder of her daughter, who is four years old and has cerebral palsy. The police have released no details and have acted responsibly in limiting their comments to the press at this time.

We sincerely hope this allegation turns out to be untrue. And we are all hoping that the young girl pulls through this medical crisis.

But if it is true, it’s time to demand that the media and parent “advocates” behave with more restraint and responsibility than they have in the coverage of the alleged murder of 3-year-old Katie McCarron by her mother.

Coverage of the alleged murder of Katie McCarron has been dominated by discussions of autism, poor support services, and an alarming parade of parents seemingly eager to tell the public they’ve felt like killing their own kids with disabilities.

You can view photos and find out more about Katie McCarron here.

For complete coverage of the trial so far this week, please visit AutismVox for Day 1, Day 2, Day 3 and Day 4 of the trial. –Stephen Drake