MMS: A Rogue New ‘Lobotomy’ for Autistic Children


Like the ice-pick ‘cure’ of the ’50s, a new ‘therapy of despair’ has parents seemingly shrugging off FDA warnings in hopes of making their children with autism easier to handle.

In the 1940s and 1950s, state mental hospitals around the U.S. were bursting at the seams with untreatable disorders, most commonly schizophrenia. In fact, more people were hospitalized with psychiatric illnesses than with all other diseases combined. Psychiatrists were desperate to do something, anything to stem the tide. 

The answer: lobotomies. 

Today, lobotomies share a space in a dusty bin next to whips, chains, snake pits, phrenology machines, and trepanning—an ancient ritual in which holes are drilled into the brain to “release evil spirits.” Although lobotomies are now a subject of horror movies, in a sense, they’re back. We just don’t call them lobotomies anymore.

In the middle of the 20th century, lobotomies were a “therapy of despair.” Today’s psychiatric therapies of despair don’t involve adults with schizophrenia; they involve children with autism, a disorder that can be both emotionally and financially burdensome and for which modern medicine has little to offer. Children with autism have been put in hyperbaric oxygen chambers, causing intense, painful pressure on their eardrums and at least one death. They’ve been given intravenous medicines designed to bind heavy metals, causing another child to die when his heart stopped beating. They’ve been taken to Central America or other regions where stem cells (or what have been called stem cells) have been injected into their spinal fluids. And, perhaps worst of all, they’ve been subjected to a therapy called Magic Mineral Solution (MMS), which crosses the line from desperation to child abuse. 

MMS—marketed variously as Master Mineral Solution, Miracle Mineral Solution, and Miracle Mineral Supplement—was invented by a former Scientologist turned health evangelist named Jim Humble, who calls himself the archbishop of the Genesis II Church of Health and Healing and has claimed in church videos to be a billion-year-old god from the Andromeda galaxy.

MMS, which Humble offers as a cure for AIDS, malaria, cancer, and Alzheimer’s disease, contains two chemicals, sodium chlorite and citric acid that combine to form chlorine dioxide—a potent, industrial-strength bleach. In 2010, the FDA warned consumers not to take MMS, and to throw any containers of it away immediately.

Unfortunately, parents of autistic children haven’t gotten the message: MMS is now all the rage in the autism community. The problem—apart from the fact that autism isn’t caused by worms—is that even small quantities of the substance, which children are directed to swallow or receive as an enema, can cause nausea, vomiting, diarrhea, intestinal bleeding, respiratory failure, anemia, and, ironically, developmental delay. In October 2015, one U.S. vendor was sent to prison for selling the product. A California man has alleged that MMS caused his wife’s death, though an autopsy was inconclusive.

Parents who give their children this industrial bleach—and there appear to be thousands of them—often share their stories online. They write about children crying out in pain. They talk about how their children’s hair has fallen out. And they talk about how their kids have slowly grown more apathetic, losing any previous emotion. How MMS has made their children quieter, easier to handle. In essence, how—as had been the case for lobotomies—they have substituted one disorder for another. Still, these parents urge each other on. It’s working, they claim. 

A New Language for the DeafBlind

https://goo.gl/RdPOrA

When I first met neuroscientist Clifton Langdon and his research assistant Oscar Serna on a hot day in July at Gallaudet University in Washington, DC, I quickly became acutely aware that despite the fact that we all understood English, we did not speak the same language.

Upon meeting, each took my hand enthusiastically to greet me. Then Langdon, who is Deaf, began signing fervently in American Sign Language (ASL). Serna, who is DeafBlind—meaning he can’t see or hear—then placed his left hand loosely on top of Langdon’s right and followed Langdon’s hand movements as the latter signed. (The capitalization denotes identity, rather than ability.)

Despite the friendly nature of the conversation, it was anxiety-inducing. Being in the presence of any foreign language can be overwhelming: not only are you unable to understand what’s being said, but you can’t voice your own opinions or needs. With spoken word, you can get a sense of what’s going on based on your knowledge of similar languages and conversational tone—and, of course, you can interject vocally if you really need to (even if you aren’t actually speaking the language of those around you). And when communicating with someone who can see you, you can wave or gesture to indicate you don’t follow—no matter what verbal language they speak.

But in front people speaking pro-tactile ASL, it’s difficult to even figure out how to make your presence known.

Pro-tactile ASL is not widely-used or well-known, in large part because it’s so new. “Prior to 2007, DeafBlind people rarely communicated directly with one another,” said Terra Edwards, an anthropological linguist at Gallaudet, in a 2011 interview with the Wenner-Gren Foundation.

In America, there are between 45,000 and 50,000 DeafBlind people, according to Gallaudet. Since the 1980s, in order to interact, DeafBlind people relied on methods like Braille, fingerspelling—the way Helen Keller communicated—and physically tracking ASL, the way Serna did with Langdon.


Black Cripples Are Your Comrades, Not Your Counterpoint

https://goo.gl/g7lRvv

On the first day of 2017, I tried to find the name of a black woman with intellectual disabilities who was killed two years ago without a hashtag or a fuss. I started with a fruitless Google search, then went full librarian and used some Boolean terms and LexisNexis – nothing. While I searched for information about the particular circumstances of her case, I was bombarded with countless other names of the fallen, casualties of an ancient war against our folks. My internet searches produced more corpses than available dissenting hashtags, more bodies than could be protested if we protested ceaselessly.

Overwhelmed, I attempted to list the reasons for how this list could be so long and at the same time these crimes be so overlooked. Although D/deaf and disabled people make up the majority of people murdered by law enforcement each year, the black activist mainstream has been slow to add disability justice to their platforms for a brighter black future.

Several days after my original search the story of a young, white disabled man beaten by four black people, three of them teenagers, emerged. White supremacist news organizations dubbed the violence the #BLMKidnapping, although none of the accused were affiliated with the Movement for Black Lives.

Suddenly, activists that had previously been silent on issues of disability – some who had even been defensive and hostile in the past toward including disability justice in their analysis – had much to say on the issue. I saw articles about the incident from Shaun King, who avoided using the solidarity term “disabled” in favor of the apolitical “mentally challenged.” When mentioned, major black organizing spaces where ableism and disability are relegated to the backburner,dug deep into their pockets and found something to say about this story, since after all, they were now directly implicated.

It’s a shame that the only time that violence against black disabled people becomes a priority is when it is used as a counterpoint to violence against white disabled people. I am a member of The Harriet Tubman Collective, an incubator for black activists, artists and advocates, and we have worked to advance an anti-ableist agenda in black movement spaces. We have been accused of attempting to splinter the movement, of being selfish for wanting inclusion in spaces purported to be designed for us.

Microsoft aims to expand trial that found OneNote can improve learning for dyslexic students

https://goo.gl/ZJEg7n

Just over a year ago, Microsoft introduced some welcome additions to its OneNote applications, in the form of new Learning Tools designed to "improve reading and writing experiences for all students - including for students with learning differences like dyslexia".

Non-profit organization Dyslexia Advantage hailed OneNote with Learning Tools as one of its top dyslexia-friendly apps of 2016, and they're not the only ones to be impressed with Microsoft's efforts in this area.

The British Dyslexia Association (BDA) carried out a limited, small-scale trial at Knowl Hill School in Surrey, England to explore the use of OneNote in assisting students with different learning abilities. The 11-week trial program found that OneNote's Immersive Reader, which can read out text shown on screen - including the student's own writing - had a significant and positive effect on the learning experience.

This trial was clearly very limited in its scale, but Microsoft UK is keen to build on its success, and said that it hopes to conduct a larger study to help further improve OneNote for students with learning differences.

Since launching Learning Tools for OneNote last year, the company has integrated some of its features into other products in the Office family.


Facebook launches new tool to find shelter and aid after an emergency

https://goo.gl/SoOmOv

Facebook is leveraging its power as the world’s biggest social network to help people find food, shelter, and transportation during or after a major emergency.

Called Community Help, the feature becomes available after a Safety Check is activated. Once that happens, you can tap on the “Go to Safety Check” banner that appears atop your screen, and then select either ‘Find Help’ or “Give Help.’

From there, you can select the type of help you need from categories like food, transportation, water, shelter, baby supplies, pet supplies and more. You’ll then see a list of people offering that kind of aid, as well as their rough location, and can initiate a direct message conversation to get the help you need.


Why people with intellectual disabilities are dying avoidable deaths

https://goo.gl/r6Xn6a

Maureen McIlquham drifts between caressing memories and hellish grief when she thinks of her daughter, Michelle.

Michelle wanted to be a copy typist. She longed to have a boyfriend and fall in love, like her sister.

She loved to sing and would often skip off to her room, close the door and play Mariah Carey's All I Want For Christmas Is You as she danced barefoot.

"I miss hearing her music coming through the bedroom wall. I miss her singing. I just miss Michelle," Mrs McIlquham said.

Michelle died of meningitis on May 19, 2009, after a middle ear infection spread to her brain.

The 28-year-old's condition was overlooked by medical staff who couldn't see past her mild intellectual disability, a coronial inquest later found.

Michelle was "evidently in real pain", the deputy coroner said. But her treating doctor wrote off her distress, crying and moaning as a "temper tantrum" after she'd suffered a seizure and was transferred by ambulance to Bankstown Hospital's emergency department.

"She had a mind of her own like anyone else," Mrs McIlquham said. "She was intelligent and bright and charming. She could speak for herself, but by the time we saw a doctor she wasn't talking, she was in pain and so tired."


Why We Need More Diversity at Autism Conferences

https://goo.gl/4E4dol

The little black boy in me frantically searched for faces that looked like mine. Where are the voices of self-advocates who look like me? Where were the keynote speakers and facilitators of workshops and webinars that I could identify with? Without much resolution to my search, it was then that the term invisible disability took on an entirely different meaning for me. It was in that moment I truly felt invisible. When current statistics show that African-American children are diagnosed with autism sometimes as late as two years later than white children, we need to discover more ways to intentionally include advocates who look like those little black boys and girls. When reports show that regressive autism may occur as much as 50 percent more often in black children than in white children, our community must do a better job at reflecting diversity by including the voices of black autistics into the mainstream so that parents and children have someone to identify with.

One of the primary talking points about autism is that it is truly a spectrum. It is a mantra many in the autism community live by. While I wholeheartedly believe autism is a spectrum, I also believe the strength of our community will be increased when the spectrum ceases to be segregated.


The Arc On Leaked Draft Executive Order That Would Impact People with Disabilities Legally Residing in the US and Seeking to Legally Immigrate

https://goo.gl/VW7a62

In light of a recently leaked draft  Executive Order that would impact people with intellectual and developmental disabilities (I/DD) who are legally residing in the United States as well as people with I/DD who are hoping to legally immigrate, The Arc released the following statement:

“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the latest draft Executive Order being circulated in the White House. The Executive Order, if finalized and signed by the President, would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country.  To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.

“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.

“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before.  But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.  

“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.

“We urge President Trump to reject this Executive Order.  We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” said Peter Berns, CEO of The Arc.


I Don’t Speak for Laura

https://goo.gl/WUSZDq

Laura is 15 now, and she has Down syndrome, so writing about her has its complications. For each sentence, I could add a page of narrative caveats, a fine print to govern the legal interpretation of anecdote:

This positive description is not intended to inspire. Yes, she is sweet, but also has non-sweet moments. The author stipulates to the existence of said moments, but feels no need to describe them for “balance.” Despite his numerous positive encounters with persons with Down syndrome, the author explicitly rejects the contention that they share a single, winning “personality,” or the underlying assumption that any one can represent all the others. Though the author has strong opinions on a range of social issues, he declines to weaponize his daughter in their service. Laura is not an example in an argument. She is not a success story. She is not a story at all. She is a person, and by describing her, the author does not speak “for” her, but intends to suggest what she is like and raise questions about the world she enters. This work is related to, yet different from, his work as a parent, which is to help her find, in every sense, her place.

Behind these caveats is the wish to control interpretation, and behind that vain hope is, in no particular order, a writer’s ego, a father’s protectiveness and a deep familiarity with the average internet comment section.

In one way, Laura’s Father’s Day note is nothing special: Lots of people with Down syndrome read and write. In another, it is evidence of a radical transformation that began in my lifetime, and is still underway. In the United States, children with intellectual disabilities won the right to attend public school only in 1975, by way of what is now known as the Individuals With Disabilities Education Act, or IDEA. Laura’s words express the law’s existence, the structures and supports that flow from the law, the teachers and aides who make good on the law’s promise, and Laura’s own will to communicate. And they express a future, in which her place depends, in part, on her ability to decode the world around her and make her wishes known.

Lately, that future seems more fragile. That’s partly because it’s nearer than it used to be. Parents call it “the cliff”: the moment, at 21, when a child ages out of the school system. What’s left, after you go over the cliff, are far fewer options for work, housing and an independent daily life. It’s common to point out that intellectually disabled adults “fall through the cracks,” but this metaphor is not quite right, because it suggests a landscape that is mostly solid. It is mostly made of cracks. Most adults with intellectual or developmental disabilities don’t work, even though most want to, and fewer still receive a living wage. Most don’t live independently, even when they could. Many face discrimination, exploitation and abuse.


Federal Court May Decide If Employers Can Reject Older Job Seekers to Protect ‘Image’

Exactly the same argument can be used against people with disabilities...

https://goo.gl/U75Unb

The details of the EEOC suit illustrate many of the complexities of combating age bias, which scholars and activists say remains widespread — and accepted — decades after passage of the Age Discrimination in Employment Act (ADEA), posing a danger to millions of Americans who find themselves economically ill-prepared for their later years.

“Research studies indicate that age discrimination remains a serious problem a half-century after Congress acted to eliminate it,” said Alicia H. Munnell, a Boston College economist and head of the school’s Center for Retirement Research. “Many older job seekers face a substantial hurdle in large parts of the American economy.”

While the nation has made measurable strides against race, gender and many other forms of discrimination, progress against age bias is less clear. One reason is that cases that appear to pit the interests of older workers against those of younger ones have been notoriously unpopular with juries and the public.

EEOC filed the case in 2011, reportedly after one of the agency’s officials had dinner at a Texas Roadhouse and began asking about its hiring policies.

Among the evidence the agency has presented: job applications from 38 restaurants in 20 states, on which company officials posted yellow stickers with comments. Besides “Old “N Chubby” they included “OLD,” “little older lady,” and “middle age ... Doesn’t really fit our image.” Also included: statistics showing that, of the almost 200,000 people Texas Roadhouse hired over the years for so-called front-of-the-house jobs, fewer than 3,000 were over 40 — a disparity so great the government’s expert witness estimated the odds of it happening absent discrimination at one in 781 billion.

Asked whether the company did discriminate on the basis of age, according to one employee’s court filings, Texas Roadhouse’s then-human resources director, Dee Shaughnessy, allegedly replied: “Did we do it? Of course we did it. All you have to do is walk in the front door of our restaurants and see what people look like.”