Travesty of justice, travesty of science

I recently bought and read the autobiography of Jennifer Msumba, an autistic YouTuber, musician and film-maker who lives at a group home in Florida who spent seven years at an institution in Massachusetts, the Judge Rotenberg Center (see earlier entry), which is notorious for using electric shocks to control the behaviour of many of its students. Last year, the US’s Food and Drug Administration (FDA), the agency which regulates not only food and drugs but also medical devices, finally (after a decades-long campaign by disability and human rights advocates in the US and abroad) banned the devices, only for the ban to be overturned by an appeals court which ruled that they could not ban devices for specific purposes, only in general or not at all. As a result, the institution has returned to using the device on 50 or so students. The true crime podcast Least Of These also covered the saga in an eight-part series, telling the story of its founder Matthew Israel, how he tried to build a utopian community off the back of a novel, tried his abusive behaviour modification methods on a friend’s child before starting schools based on it in both California and Rhode Island, the latter later moving to Massachusetts; she interviews Msumba in the 7th episode, published 23rd Sept 2021. (Shouting At Leaves can be ordered from Waterstone’s or your local bookshop or bought from Amazon in paperback or Kindle format.)

Shouting At Leaves tells the story of Jennifer Msumba’s childhood, her family life, her school life, her friendships and how they broke down (in some cases very brutally), her experience of Obsessive-Compulsive Disorder, and the onset of mental illness which led to her being withdrawn from high school and admitted to hospital, and then her progress through a number of hospitals, group homes, residential schools, the JRC and finally a spacious group home campus more than a thousand miles from her family where she has lived for 13 years now, where she has been able to pursue her interests very freely. I see some parallels with other stories of autistic people who have experienced a traumatic early adulthood and a history of being institutionalised; back in 2008 I watched a French film titled My Name Is Sabine (see earlier entry and this article from the Guardian), about the autistic sister of a French actress who was institutionalised in her 20s, spending four years in hospital, drugged and for a long period barred from seeing any of her family. Ultimately they moved her into a newly founded care home where she began to be weaned off the drugs and to have more control over her life and to be able to do more and to go out. Very often it is the changes that occur in the teen years, where brothers and sisters move away and the certainties of school are withdrawn, that precipitate the crises that lead to someone being hospitalised; often this lasts some years before their families are able to make arrangements for them to live independent or partly independent lives.

Sadly two opportunities to help Jennifer Msumba in her young adulthood were missed. She was admitted to hospital while in high school, and it was there that her OCD was diagnosed and some progress was made, although it was also there that she was introduced to psychiatric drugs which made her sleepy and caused weight gain, as they so often do. However, she was diagnosed after ten days or so and became a “revolving door” patient, being admitted again and again as she and her family found living together impossible, and while some staff were kind to her, others were cruel and favoured putting her in restraints for hours; in one case, a male nurse tried to kill her while restrained. As a young adult, she moved into a group home, which started out well, with staff that played games with the residents, took them out and taught them life skills, but the home was sold to a company that ran it into the ground, allowed the house to become filthy, did not engage with her or the other residents and failed to budget for food properly, nor keep her safe from other residents, including a male flatmate who stole from and bullied her. This led to a suicide attempt. Ultimately, she was admitted to a “state hospital” where she was kept in seclusion and restrained when she refused orders. So desperate to get out of there, she agreed to move to JRC despite her misgivings; the place was brightly decorated with Disney and Coca-Cola themes, among others, but students did not react to her presence but tapped mindlessly on keyboards. An old friend warned her that if she went there, they would shock her, but he was pulled away. But desperate to escape the ‘cruel’ State Hospital, she overlooked her misgivings and accepted the move to JRC; she notes that she did not even complain when restrained hand and foot to a stretcher for the journey.

There, she experienced the worst excesses of JRC’s notorious ‘treatment’ programme. For the first two months, she was kept restrained for hours at a time and expected to perform pointless tasks, barked at when she asked for explanations, and made to wear a nappy (unnecessarily). Then she was offered a place on their so-called GED programme (GED stands for Graduated Electronic Decelerator, the fancy name for the electric shock device they use) as a way of being able to sit at a desk rather than on a “restraint board” on the floor, which she gladly accepted, and was then presented to a judge in full restraints and a helmet which stopped her seeing properly. The device was contained in a backpack which weighed about ten pounds (for the batteries) and had electrodes which stuck to her arms, legs and body and was secured to her with a locking strap. This device was used to deliver shocks not only for self-injurious behaviour, which is its purported purpose, but for any behaviour the staff deemed undesirable: answering back, refusing to follow orders, shouting, becoming distracted from work, or pretty much any behaviour they deemed odd or irritating, as well as natural reactions to the shocks themselves such as screaming or tensing up, or to seeing others being shocked. The devices sometimes misfired, would continue shocking until disconnected, would activate when wet (and they were not removed when students were being bathed), and would sometimes be simply used for fun by staff. Staff were discouraged from showing any kindness to students or from chatting or socialising with them. As noted in the episode of Least of These she appeared on, staff were expected to “write up” other staff members for these and other real or imagined offences, including not delivering enough shocks.

You might ask how an institution has been able to continue such a scandalously abusive practice for so many years: the answer is that the judiciary have actively colluded and regulators have been cowed or looked the other way. There have been reports by inspectorates that go into great detail about the electric shock treatment, how it’s dished out at the drop of a hat and how it traumatises its victims and how no other school in the civilised world sees the need for it, and about how little interaction staff have with students other than barking out orders and terse corrections at them, and how inadequate the education is, and when authorities move to cut off funding or to withdraw students or, God forbid, close the place down, the school wheels out a few parents who claim that their children are so much better off on the shock treatment than in their previous placements where they may have been in restraints, or drugged into a stupor, or harming themselves (sometimes very seriously), and judges have accepted their arguments rather than the obvious: it’s torture, it’s abuse, it’s plainly unacceptable, and it’s unnecessary. So, the institution trades on the inadequacies of others: so many other schools cannot handle them, or don’t understand autism (especially as it presents in women and girls), and a lot of state hospitals are hellholes and do indeed drug and restrain people. As Jennifer Msumba said in her interview with Least of These, her mother was swayed by that argument and fearful to pull her out when she became her guardian because before being moved to JRC, she actually was like that. But why have state hospitals been allowed to become like that? Why is that kind of cruelty allowed there either?

But the biggest share of blame for allowing JRC to continue to abuse its students must go to the judiciary. In the words of Joni Mitchell, “in this land of litigation, the judges are sleeping”. In two states with famous universities that attract the brightest minds from all over the US and the world, judges have allowed an argument based on an elementary logical fallacy to be presented, and win: “it works for us”. That argument is the justification for every kind of quackery. The truth is that the shock treatment does not work, of course; it simply keeps their child quiet because they are afraid. They are enduring one awful life rather than another. But in actual science, including medicine, something appearing to work does not prove that it does what it appears to; one has to investigate what is causing what and whether the apparent good effect actually represents good health or the masking of a symptom, leading to something dangerous.

In allowing students to be placed on the shock treatment, each of which requires court approval, judges have turned their backs on good practice time and again. They admit as ‘evidence’ the JRC’s laundry lists of the students’ ‘inappropriate’, ‘destructive’ or ‘aggressive’ behaviours without investigating whether they even happened, whether they had been greatly exaggerated, whether they were provoked (and there is ample evidence that JRC’s staff provoke students into ‘behaviours’ to justify shocking and/or restraining them), whether they were understandable stress behaviours or harmless repetitive, odd or mildly irritating behaviours associated with some impairments. They allow students to be presented in restraints and helmets but fail to ask them any questions. This particular practice runs contrary to the behaviour in adult courts, where an accused person cannot be shackled as it is known that the appearance of a shackled person leads the jury to see them as dangerous. Even in juvenile courts, many states have outlawed shackling in court as it has come to be recognised that this is prejudicial as well as degrading to a young person who may be no more than a runaway, or near the end of a placement and appearing for administrative reasons. Yet judges in Massachusetts continue to allow a disabled person, adult or child, to be fitted with a device that allows a staff member to attack them at will, at just the touch of a button, on the basis of such thin evidence and obviously prejudicial presentation. JRC bucks trends, maintaining abusive practices that the juvenile justice and mental health systems have gradually abandoned.

On the subject of restraints, this is an issue with JRC’s behaviour that has flown under the radar somewhat, perhaps because the shock treatment is so egregious and has occupied much of the activists’ time and energy and ink, but it uses restraints in the same abusive way it uses the GED; as punishment, as humiliation, as torture, given that it is often used to keep people in stress positions. Jennifer Msumba noted that they use a device calls a ‘cross-over’ which keeps the arms even further down than the usual wrist/waist restraint used both in criminal justice and in the mental health system (especially during transport), and this is the first time I have heard of a restraint like that, which suggests that the JRC is inventive in this area of abuse as well. No other institution for disabled people habitually transports them shackled like felons (this is common when police transport people committed to hospital for mental health reasons, though there are campaigns to stop this which are having some success in some states); it would be a reason to close a place down in many jurisdictions, but not, it seems, Massachusetts. The GED is itself a restraint, as its weight is an encumbrance. A ball and chain, effectively. Yet, Massachusetts’ and New York’s judiciaries have turned a blind eye to these practices too, and even if the GED were outlawed tomorrow, the restraints would likely continue.

Most of the material about abuses at JRC are about events before about 2010. I am aware that they have ceased some of the practices described in Jennifer Msumba’s and others’ testimonies, including the four-point floor restraint/shock board, but the GED has been in continual use since then. Perhaps they have been less rash in their choice of victim, choosing less articulate victims and perhaps people with less involved parents. But it is clear that, with or without that particular form of torture, the people running the JRC are manifestly unfit to run any caring or educational establishment. They have no understanding of autism. They have no interest in looking behind people’s behaviour, only in curbing ‘problem’ behaviours that are not even always problems and may be communicating something. They have no compassion, they are not kind, they actively discourage and indeed threaten staff with the sack for both. They are abusive to their staff, expecting them to spy and inform on each other. They do not respect their students’ right to their families, let alone family life. For all the disabled people they present in court trussed up like Hannibal Lecter, their founder resembles a real-life evil doctor, one who carried out scientifically invalid experiments on unconsenting captives: Joseph Mengele (valid experiments on such captives would, of course, still have been criminal). He and his acolytes must be barred from any involvement in care or education for life, and prosecuted for their decades of abuses. Judge Rotenberg Center, this wretched institution, this wretched employer, must be shut down. In places where there are regulators and inspectorates with teeth, and where it is understood that Black and disabled people’s lives and rights matter, places like this get shut down. This happened to somewhere nowhere near as abusive as JRC in the UK very recently, with 24 hours’ notice. This can happen if there is the political will.

A link to a petition to ban the electric shock device can be found here.

An archive of material on the abuse at JRC and efforts to stop it or close it down can be found here.

Possibly Related Posts:

• The ‘special’ schools that aren’t schools
• Know-nothing managers, uncaring carers
• Autism, female diagnosis and trauma
• “Have you tried boarding?”
• How we still let our learning disabled down