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Comment on: Diagnosis of autism, abortion and the ethics of childcare in Yoruba culture

9 Nov

I have an email alert from PubMed for autism. I’ve seen a few very problematic papers go by over the years, but this one really bothers me. The study is from Nigeria, home of much of the Yoruba people. I have not seen the full paper, but from the brief abstract it appears that the Yoruba people have developed moral principles that create an accepting environment for autistic children. They believe in “equality of humans at birth” and “solidarity”. The author of the study appears to take the position that “despite these justifications” there is a need for a “contextual rethinking” which would allow for aborting fetuses deemed to be at high risk for autism.

Note that there is not existing test to determine that a fetus is at high risk for developing autism. And even if there were, really? We need contextual rethinking to allow for abortion of autistics? And this is in a medical journal?

Acceptance, equality and solidarity should not preclude diagnosis and support for autistics, but I wonder if the author is going beyond that in his/her call for these Yoruba principles from prohibiting treatment.

Here is the abstract:

Indian J Med Ethics. 2014 Oct-Dec;11(4):245-8.

Diagnosis of autism, abortion and the ethics of childcare in Yoruba culture.

Fayemi AK.

Author information

Abstract

This paper examines the ethics of childcare in Yoruba culture in the contexts of autism and abortion. The traditional Yoruba moral principles of ibikojuibi (equality of humans at birth) and ajowapo (solidarity) have been theoretically developed to establish the personhood of autistic children and provide a justification for not aborting foetuses with autism. Despite these justifications, this paper argues that there is a need for contextual rethinking, which would allow for: (i) prenatal genetic testing, as well as abortion of foetuses with a high risk of the autism mutation, and (ii) early clinical diagnosis and treatment of autistic children in contemporary Yoruba society.

—
By Matt Carey

London McCabe

8 Nov

London McCabe was a six year old kid.  He was a kindergartner whose principal described him as loving to sing and happy.  He liked hats.

I wish when news outlets would report on murders, they would start with who was killed.  The good points of the person.  What we as a people lost.

I bring that up because, as you likely suspect, London McCabe was killed.  Earlier this week, London McCabe was killed when his mother threw him from a bridge, from which he dropped about 133 feet to the frigid waters of a river below.  That’s about a three second fall.  Three seconds is short, I grant you, but long enough to feel abject terror.

If news articles focused on the victim, perhaps that sort of fact would come forward.  Perhaps we would be put in the place of sympathizing with the victim.

When you think of secondary victims, they would be the family and friends who knew and loved London.   People who had no way to avoid thinking about how he died.  I know I can’t avoid it. I can’t avoid thinking of my own kid terrified and falling.

I wish news articles wouldn’t immediately jump on the disability (or disabilities) of the victim, like the first article I saw.  For London McCabe was autistic.  Nonverbal.

Facts about motive are very scarce right now.  There are indications that the mother suffered from some mental illness.  As a community we’ve seen that argument play out all too often as a “blame the victim” approach: it’s hard to raise an autistic child and the parent buckled under the pressure.  We’ve seen this approach used cynically.  That doesn’t preclude actual mental illness in this case.  We ask for equality in the treatment of those who kill in our community.  Equality means not throwing our friends in the mental illness community under the bus.  The disability of the victim is not an excuse.  It is not a mitigating factor.  Real mental illness is.  Let’s see what the facts are in this case.

London McCabe’s family is not ready to discuss the details, but has released this message at a prayer vigil:

We are deeply touched by the community outpouring of love and support for our family…The best way you can honor him and not let his death be in vein is to purpose in your hearts to respond in kindness, love and respect toward all those people in your lives especially those with special challenges…Don’t allow hatred, anger, bitterness, or revenge to fill your heart

—

By Matt Carey

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Gigi Jordan found guilty of manslaughter in killing of her son Jude

6 Nov

Jude Jordan was an autistic boy. He was murdered by his mother. I use the term “murdered” in the colloquial sense of “a person deliberately took his life”. Legally it wasn’t murder. Legally it was manslaughter as the mother, the murderer, argued extreme emotional disturbance. Her story was convoluted, but she argued that she believed her son was being sexually abused by multiple people, including his biological father. She also argued that she believed that her ex husband intended to kill her and that would lead to the biological father becoming Jude’s caregiver. Having read documents she’s put online (she has some on a new website(http://www.gigijordantruth.com/) and more were on a now defunct website). I find her arguments seriously difficult to believe.

Jude’s mother is estimated to be worth about $50M. She had the money to hire a team of high powered attorneys to argue her case. And she will pay them more to appeal her case. But apparently she didn’t feel that she could use that $50M to hire attorneys to insure that someone she trusted could take care of Jude in case she died.

If you search for Gigi Jordan on Google, you can find her website right away. Because someone has bought advertising space for it. She apparently put that up as part of her media blitz that coincided with the jury going into deliberations.

But back to the important part of the story. Jude Jordan is dead. And the person who killed him may serve as little as 5 years in prison for the crime.

As happens whenever a news story about a parent killing his/her autistic child is put online, the comments include “walk in the parent’s shoes before you judge”.

Here’s the thing: I am a parent of an autistic child. A child with a very high level of challenges. I can’t say I’ve walked in Gigi Jordan’s shoes. I don’t have $50M like she did (how much is left after paying attorneys is unknown). I don’t know that I can set up a trust to care for my kid long after I’m gone. I can’t quit work to spend my years caring for my kid, as I would like. Gigi Jordan could do all of that.

As long as we are talking about walking in other people’s shoes: Gigi Jordan will never be able to walk in my shoes again. I love my time with my kid. And I want to protect my kid from caregivers in the future who think that one can murder a disabled kid and get a light sentence. And she’s part of the problem. When she gets a light sentence, it diminishes every disabled person’s chances of living a life free from the threat of caregiver abuse and/or murder.

—
By Matt Carey

Jude Mirra’s mother takes the stand in murder case

9 Oct

Jude Mirra was an autistic 8 year old.  Was as in he’s dead.  His mother killed him with a fatal overdose of drugs and alcohol.  His mother, Gigi Jordan, is now on trial for his murder.

If you have followed this story, you likely know what a strange story she has told.  At one point someone (presumably associated with her) posted multiple documents online (gigijordanbail.com as I recall).  Rather than focus on her account, let’s consider the facts.  She killed her son.  The only question now appears to be whether she forced the drugs into his mouth or not.  From the New York Times, In Testimony, Mother Who Killed Son, 8, Denies She Forcibly Drugged Him:

The police found the boy, Jude Mirra, dead in a bed at the Peninsula Hotel at about noon on Feb. 5. The door had been barricaded with a chair. Ms. Jordan was on the floor next to the bed, surrounded by pills. A pill crusher and a syringe used to force feed patients were discovered, along with empty vodka bottles.

An autopsy showed Jude had ingested fatal doses of several medications, including the sleeping pill Ambien and the tranquilizer Xanax. A medical examiner testified the boy had bruises on his face and chest consistent with having a mixture of pills forced down his throat.

She claims that her son was being abused by multiple people, including his biological father.  And, her story goes, she was being stalked by her son’s legal father (her former husband) who was trying to have her murdered. And, if I recall correctly, he also was allegedly abusing Jude.  She had to kill her son, you see, to protect him from falling into the hands of his abusers.

The Post discusses her stories in Someone lock up Gigi Jordan once and for all!.  But what do we have except another version of “I had to kill him to protect him”.

CNN is also reporting the story, noting:

“His fate was sealed,” assistant district attorney Matt Bogdanos said in opening statements. “He didn’t die fast. One by one, his vital organs shut down. It didn’t take minutes. It took hours to die.”

While Jude lay dying, Bogdanos said, Jordan sent an email to a financial adviser instructing him to transfer the $125,000 trust she set up for her son to her personal account.

It took him hours to die.  And the mother, who supposedly was attempting suicide, transferred money out of his account while he was dying.  It’s not like the police arrived just in time to save the mother from her pills, either:

The exact time of the boy’s death could not be determined, but Jude’s body temperature was 80 degrees, suggesting that when police arrived, he had been dead for 8 to 14 hours, Bogdanos said.

Sadly, Jude’s mother appears to have been a part of the “cure at all costs” community.  The New York Times is also reporting.

For several years, Ms. Jordan took him to medical specialists across the country, seeking a cure for his symptoms and subjecting him to experimental chemotherapy, injections of powerful steroids and filtering his blood to counteract autoimmune disorders.

How much did the false hope sold by charlatans play into this murder?  We may never know.  Jude died in 2010 at age 8.  He grew up during the height of the “better dead than autistic” rhetoric.

Jude’s mother is reportedly using her defense to obtain a manslaughter conviction rather than murder.  She’s quoted as calling this a “mercy killing”.

This is no mercy killing.  This is murder.  Brutal murder.  I hope the jury sees through Ms. Jordan’s bizarre stories.

—

Matt Carey

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Mother who tried to kill her autistic daughter sentenced: 10 to 22 years

9 Oct

Isabelle Stapleton is an autistic teenager with extraordinary needs. She is also a teenager who will grow up without her mother, as her mother has been sentenced to 10 to 22 years for first degree child abuse. The mother was originally charged with murder, but she pled to the lesser child abuse charge. Details can be found at Mom who tried to kill daughter gets 10-22 years and Kelli Stapleton, who tried to kill autistic daughter, sentenced to minimum 10 years prison.

Here’s a quote from the prosecutor:

“My office strives to protect our most vulnerable victims,” she said. “In this case, Isabelle’s autism did not mean she deserved less protection. Her life has value, and she deserves justice for the attempt on her life. The right outcome was achieved in this case. The defendant was sentenced as recommended by our state’s sentencing guidelines, and justice was obtained for Isabelle.”

It is difficult to find words to discuss cases of murder and for me especially attempted murder of the disabled. As the parent of an autistic kid with very great challenges, this story affects me personally. The disabled are at a great risk of abuse–including from their caregivers. We can not excuse or diminish what Isabelle’s mother tried to do. What she did do. We do this because it is right, not because of loyalty to one group over another as many have described this.

Online one can find very active discussions about this case. Mrs. Stapleton’s friends have jumped forward to defend her. Others, possibly after seen “Dr. Phil” cover this story are also out there. Lot’s of people downplaying what this was–attempted murder. People using Isabelle’s disability to diminish the acts of her mother. People who see loyalty first not to the parents, but to the guilty. One can now find people attacking the father. Everyone is at fault…except the mother. The person who tried to kill Isabelle.

If loyalty is to come into play in this discussion, our first loyalty as parents is not to our fellow parents. Just as Isabelle’s mother’s first loyalty was to the protection of her daughter, ours is to the protection of our children and autistics like our children.

And for those who see great sympathy for fellow parents, consider this. How would you feel if your spouse killed or tried to kill you child? You want to feel loyalty to a parent, Isabelle’s father now has to raise a family alone. Isabelle’s siblings now have to grow up without a mother. It isn’t the court who took their mother away. It’s the mother who left them by her actions.

For those who think that by accepting that justice was served when Isabelle’s mother was sentenced we diminish the challenges of the mother: you are wrong. We can have the discussion of how difficult it is to be a parent. How difficult it is to be the parent of a disabled child. That conversation must start with the challenges and needs of the child. And what greater responsibility do we have than to protect our children’s lives?

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By Matt Carey

ASAN Statement On Dr. Phil Episode Featuring K. Stapleton

20 Sep

Below is a statement by the Autistic Self Advocacy Network.

The Autistic Self Advocacy Network issued a statement on Friday, September 19th, condemning Dr. Phil for recent segments featuring Kelli Stapleton.

Stapleton is currently standing trial and has pled guilty to the charge of first-degree child abuse for the attempted murder of her autistic daughter, Issy Stapleton, age 14. The Dr. Phil segments are consistent with the broader media coverage in the year since the attempted murder; rather than rallying with sympathy and support for a child victim of attempted filicide, there have been near-constant attempts to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim. But this abhorrent and retraumatizing brand of violence found a new voice and a new vigor on Dr. Phil.

In the segments, K. Stapleton has been granted new means to exploit her victim. Whether this comes in the form of violating her daughter’s privacy by sharing some of her most vulnerable moments with the world; crafting a sensationalized and dehumanizing narrative of her daughter’s life; using this narrative to solicit dubious donations; or committing character assassination by emphasizing her daughter’s “violence” and painting her as monstrous, Dr. Phil offered an abusive and murderous parent a platform, with no regard for the consequences to her victim–or the potential copycat effects.

“We see a pattern of copycat crimes whenever there is a well-publicized case of a parent murdering, or attempting to murder, their disabled child” said Julia Bascom, ASAN’s Director of Programs. “Every time this happens, commenters come out of the woodwork offering every possible excuse, and nothing could be more dangerous. As disabled people, our lives aren’t valued, and we see the consequences in every one of these headlines. Stapleton attempted to kill her daughter one year ago in the wake of an extremely well-publicized and extraordinarily hateful hatchet job about the murder of another autistic teenager, Alex Spourdalakis. Dr. Phil had an opportunity to shut down this cycle of violence, and instead he chose to perpetuate it, as loudly and widely as possible.”

The victim of child abuse is not the adult abuser. The victim of murder is not the murderer. K. Stapleton is not the victim of her attempted filicide, but she has been allowed to re-victimize her target. The Autistic Self Advocacy Network forcefully denounces Dr. Phil for facilitating this violence, and urges the disability community to join us in breaking the cycle of violence and copycat murders we see year in and year out. Join us in sending this message: it is always wrong for a parent to murder their child. There is never a justification. There are always other options. The only victims here are disabled people murdered by those we should have been able to trust the most.

And to Issy Stapleton, the only victim of this tragedy, the only person whose voice deserves to be heard here, we say: what your mother did was not okay, and it wasn’t your fault. There is a whole world of people who support you. We are sorry this happened to you, and we are doing everything in our power to make sure it can never happen to anyone, ever again. You deserve nothing less.

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

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