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When a child is killed by a parent the word “but” does not apply

13 Sep

Isabelle Stapleton is an autistic teenager. Thankfully we get to say “is” as, you see, her mother tried to kill Isabelle (“Issy” to her friends). The mother took her daughter to a remote area and lit two charcoal grills in her van so that the carbon monoxide would poison them both.

It has been reported that at times Isabelle has been violent. Keep in mind most of those reports seem to source back to the mother, the mother who tried to kill her. I’m not trying to downplay Isabelle’s struggles. Some in our community have very great needs.

“Dr. Phil” has interviewed Isabllele’s mother. People Magazine has a story up on it. Whenever these stories go online I cringe. Rarely are they handled well. And I cringe even more at the comments I know will be there.

One can just bet that many comments will take the form, “no one should kill her child…..but…..”

There is no “but” in this. No one should commit murder. No parent should kill her child. Full stop. Period. “But” does not apply.

Variants of this are “don’t judge her” and “until you walk in her shoes”.

“Judge” means to form an opinion.

For those who write that: the mother tried to kill her daughter. I will form an opinion about this–this is wrong. I don’t have to “walk in her shoes” to say that. Why won’t you form an opinion? Why does her daughter’s disability have anything to do with forming this opinion?

Just in case you are wondering: I did purposely write this without mentioning the mother’s name. The mother is not the story. When autistics have been murdered in the past there have been news stories that never mention the name of the victim.

By Matt Carey

Shannon Des Roches Rosa: Changing Conversations: When Parents Murder Disabled Children

11 Sep

Shannon Rosa is the incredible parent of incredible kids, one of whom is autistic. I could say this from what I’ve read because Ms. Rosa is an excellent writer, but I have also met her and Leo in real life. Ms. Rosa writes at BlogHer as well as The Thinking Person’s Guide to Autism and Squidalicious.

A recent BlogHer article she wrote covers a very important topic: how when a disabled person is murdered the conversation usually focuses on the murderer, not the victim

Changing Conversations: When Parents Murder Disabled Children

Her article starts:

Michigan parent Kelli Stapleton recently pled guilty to poisoning her autistic teen daughter Issy. According to police reports, Kelly lured Issy into a van, “drugged her, lit the grills and left the van to get more charcoal while her sleeping daughter breathed in poisonous carbon monoxide fumes.” Kelli and Issy both survived the attempted murder-suicide. Issy emerged from a coma and seems to be doing well; Kelli is in jail, and is scheduled to be sentenced on October 6th.

Go to Changing Conversations: When Parents Murder Disabled Children for the full article.

–By Matt Carey

An open letter to the National Whistleblowers Center: David Lewis and the outing of a CDC whistleblower

11 Sep
Dear National Whistleblowers Center,
 
I appreciate the work you do but I would like some clarification on recent events.
 
A gentleman came forward from the CDC to provide information about what he felt were inappropriately withheld results on an old autism study.  This gentleman guided someone outside the CDC to reproduce the result.  These results were published and with that publication a public relations campaign was started.  This is where your board member, David Lewis, comes into the story.  Mr. Lewis can be seen in the video produced.  That video can be found here: https://www.youtube.com/watch?v=sGOtDVilkUc
 
The original video was produced with the whistleblower’s name censored and his voice modified.  However, his gender was given, making it rather simple work for the CDC and everyone else to work out who this was (only one male was an author on the paper in question).  Within 3 days of the release of the video, the online version was replaced with the uncensored version you see now–the version with “whistleblower revealed” as a title.
 
Since that time the whistleblower has released a statement including noting
 
1) he never consented to having his phone calls taped
2) he never consented to having his identity released
3) it appears, thus, that the video was not shown to the whistleblower, so he could not have approved of the rather ugly race-baiting angle it took.
 
 
Here are some other problematic details in these events.
 
1) Mr. Lewis is in the employ of the organization which did this study, Focus Autism.  Both Mr. Lewis himself and his charity/church have been paid according to public tax forms from Focus Autism.
 
2) Mr. Lewis does not make this conflict of interest known in the video.
 
3) Mr. Lewis has a history of working with the director of the video, Andrew Wakefield.  This includes soliciting donations through Mr. Lewis’ church with the purpose of using those funds to support Mr. Wakefield. 
 
4) Mr. Wakefield has major conflicts of interest in this video as he is trying to rebuild the reputation he damaged with his unethical actions (as deemed by the U.K.’s General Medical Council).
 
5) These COI’s are not disclosed in the video, although most in the autism community are well aware of Mr. Wakefield’s.
 
6) The video takes a very ugly race-baiting approach.  It takes what the whistleblower suggests is a scientific dispute and frames it as CDC officials partaking in a new “Tuskegee” experiment an compares the CDC officials unfavorably to Hitler, Stalin and Pol Pot.  This includes civil rights pioneer Marshalyn Yeagan-Allsopp.
 
Mr. Lewis has not issued a statement that I can find distancing himself from the actions of his team: the breach of confidentiality of the whistleblower nor the cynical use of the whistleblower for political and public relations gain by Mr. Wakefield.   I can not see how the treatment of this whistleblower by Mr. Lewis’ team can be construed as appropriate. In the video we can see Mr. Lewis making use of the opportunity for product placement of his book, “Science for Sale”.  Given Mr. Lewis’ tacit approval of this video, again one put together for his own benefactor Focus Autism, I see his actions as “opinion for sale”. 
 
I write for a website called LeftBrainRightBrain.co.uk.  You will see I have been highly critical of the actions of the team that outed this whistleblower.
 
Could I ask for a statement from your organization?  Do you believe these actions to be within the bounds of appropriate behavior for one working with a whistleblower?  If so, could you elaborate, because recording a whistleblower without his permission, outing a whistleblower, and using the whistleblower for such an ugly public relations campaign without his approval seem far outside the bounds to me.
 
I look forward to your reply,
Matt Carey

Every human life is worth living

4 Sep

This, like the previous article I wrote, is extremely difficult to write. I find words fail me and that a dry presentation doesn’t do justice to the topic. How, exactly, does one write about the fact that Germany has erected a monument to the disabled and mentally ill killed by the regime?

The New York Times discusses a monument erected in Berlin:

Monument Seeks to End Silence on Killings of the Disabled by the Nazis

BERLIN — The first to be singled out for systematic murder by the Nazis were the mentally ill and intellectually disabled. By the end of World War II, an estimated 300,000 of them had been gassed or starved, their fates hidden by phony death certificates and then largely overlooked among the many atrocities that were to be perpetrated in Nazi Germany in the years to follow.

One can read the full article on the New York Times website. And many other news outlets. I will take one more paragraph from the Times.

“Every human life is worth living: That is the message sent out from this site,” Monika Grütters, the German minister for culture, told a crowd gathered for the opening ceremony. “The ‘T4’ memorial confronts us today with the harrowing Nazi ideology of presuming life can be measured by ‘usefulness.’ ”


By Matt Carey

Kelli Stapleton, mother who tried to kill her autistic daughter with carbon monoxide, pleads guilty

4 Sep

Isabelle “Issy” Stapleton is a human being. Worthy of respect. She is endowed with inalienable rights of life, liberty and the pursuit of happiness. Being disabled does not change this. Being autistic does not change this. Having an extremely challenging life in her pursuit of happiness does not change this.

And she was almost robbed of what we in America consider “inalienable”. Her mother tried to murder Isabelle.

There are multiple news stories carrying this. Below I quote from People Magazine: Kelli Stapleton Averts Murder Trial by Pleading Guilty to Abuse of Daughter with Autism.

On the eve of her trial for attempted murder, Kelli Stapleton – the Michigan mom and former blogger on autism issues who stood accused of trying to kill her autistic teen daughter – pleaded guilty Tuesday to a felony charge of first-degree child abuse.

Kelli Stapleton, the mother, still faces the possibility of a very long prison sentence. I hope those deciding the sentence do not in any way lessen the punishment compared to if Ms. Stapleton was attempting to murder a non-disabled child.

I am very thankful that I can still say Isabelle Stapleton is a human being. Her mother failed in her murder attempt.

I wish the young Miss Stapleton well. I hope the the pursuit of happiness turns into a life of happiness.


By Matt Carey

CBS News on Judge Rotenberg Center: Controversy over shocking people with autism, behavioral disorders

6 Aug

Controversy over shocking people with autism, behavioral disorders is a story on the CBS News website today. In it, a former resident of the Judge Rotenberg Center is interviewed

Jennifer Msumba is on the autism spectrum. For seven years, she was treated at the Judge Rotenberg Center in Canton, Massachusetts, where she received painful electric shocks aimed at modifying her behavior. She describes being strapped, spread-eagle to a restraint board and shocked multiple times before she left the center in 2009.

“It’s so scary. I would ask God to make my heart stop because I didn’t want to live when that was happening to me. I just wanted to die and make it stop,” she told CBS News correspondent Anna Werner in an interview at her mother’s home outside Boston. “I thought, they won’t be able to hurt me anymore.”

There is video of an extended interview with Ms. Msumba. Unfortunately, the embed code doesn’t work on this blog, but that video is here.

The FDA is considering whether the electric shocks should continue. CBS reports that decision is due shortly.


By Matt Carey

Locking autistics in a filthy basement room can never be called “the least bad solution”

28 Jul

The Washington Post has a series of articles about a pair of twin autistic adults who were found locked in a basement room. Here are the first two:

Rockville, Md., couple charged with abusing twin 22-year-old autistic sons

and

Rockville autistic twins who were locked in room are moved

From that second article:

The autistic twins who spent nights locked inside a urine-stained room in their parents’ basement have been safely placed in another home under the oversight of social workers, Montgomery County authorities said Tuesday.

The young men, 22 years old, also have undergone medical checkups, which didn’t find signs of further abuse, police said.

Their parents — John and Janice Land — have each been charged with two counts of abuse of vulnerable adults and two counts of false imprisonment. It appears that the authorities’ case against them rests on the conditions that left the two men inside a filthy, dark room with only an old comforter to sleep on. Neither man can communicate verbally. The doors to the room were bolted from the outside, and the basement also was blocked in places by plywood, according to police accounts and fire inspection reports.

“This case is unacceptable,” said Laurie Reyes, a Montgomery police officier who works with autism families. “There are other measures that can be put in place.”

She said that the conditions for the twins were the worst she had ever heard of in the county.

“the worst she had ever heard of in the county”

Not “just” locked in the basement. Squalor. Filth. According to a later article, the house has been condemned.

This inspired the Post and writer Dan Morse to write another article: Coping with adult children’s autism, parents may face ‘least bad’ decisions

Mr. Morse, I appreciate what you are trying to do. We absolutely need better supports for our autistic adults. But framing this story around the actions of these parents is bad. Really bad. I am at a loss for words in describing just how bad.

I’ll pull one sentence out.

But John Land’s father — John Land III — has said the criminal allegations are overstated given the challenge the twins presented.

If you are going to write that, what about a loud rebuttal? How does being disabled make it non criminal to hold these twins in a squalid prison cell? I frankly think the criminal charges are understated, much as this rebuke is extremely understated.

This sort of abuse can never be the “least bad” choice. Not even close.

Please, find a way to write about the challenges faced–from the perspective of the autistics. Find a way to write about autistics as equals, humans who deserve support because we, the non disabled, should live up to our responsibility.

By Matt Carey

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