29 March 2014

Uptown Radio Interview: Autistic People Demand Support As Diagnoses Rise

Live from Amman on Uptown Radio at the Columbia University School of Journalism! (Thanks to s.e. smith for passing my name along!)

This week, I had the pleasure of speaking with Katie Toth from Uptown Radio about the CDC's new report on the rate of autism diagnoses in the United States. You can check out the interview on Uptown Radio's website or the my transcript below! 

KATIE TOTH: A new report from the Centers for Disease Control and Prevention found that diagnoses of autism in children have gone up one-third in the last two years alone but that does -- that is not necessarily a rise in the number of cases. Some experts believe the higher rates reflect a heightened focus on autism by parents, doctors, and teachers that may be resulting in more children getting diagnosed. But the report also highlighted disparities in the number of white children diagnosed as autistic compared with people of color. And while 1 in 42 boys are diagnosed, the number is way lower for girls, 1 in 189. Lydia Brown is a disability advocate and student at Georgetown University who was diagnosed with autism herself at age 13. She points to our society's stereotypes as a possible reason for the disparity.

LYDIA BROWN: There are a lot of prevailing stereotypes about gender to begin with, even when you take autism or disability out of the equation. There are stereotypes about what it means to be a normal boy versus what it means to be a normal girl. If you're a girl or you're a woman, you're more expected to assimilate, to be quieter, to be in the background, and if you don't speak up much, if you're very quiet, that's just considered, oh, you're just being a shy girl. And because of that, a lot of times, characteristics that might stand out in an autistic boy compared to neurotypical boys might be overlooked in autistic girls.

KATIE TOTH: Looking forward, in terms of seeing this rise in diagnoses, what's this going to mean for people in the autistic community?

LYDIA BROWN: Well, moving forward, the study does show that there continue to be a lot of disparities in terms of who is able to access a diagnosis, and while I personally do not believe in using or structuring the medical establishment as the gateway for who can be considered autistic, the reality is that access to services such as the educational system, such as  vocational services, and other developmental disability related services require documentation--meaning a diagnosis on paper. And because of that, it is critically important that we increase access to diagnosis and diagnostic services for communities, particular those that are already underrepresented, as women, those who might be sexual minorities, people of color. Even the most recent numbers that just came out, the 1 in 68 number, white children were 30% more likely to be diagnosed ahead of Black children and the numbers are also fairly low for Hispanic children. For example, we already know that in the United States if you are a person of color, you automatically face enormous societal barriers in the form of structural racism and how it plays out in public policy, and because of that it is critically important to expand access to diagnoses and the availability of diagnostic services because the same communities that are already being hurt in other areas are further harmed when you happen to be autistic as well as a person of color and you're unable to access services because you are not in a position to access a diagnosis in the first place.

KATIE TOTH: You've sort of found a very tight-knit community online. You've been very much an online presence and an advocate. I'm wondering sort of how that support and how that community changed your life?

LYDIA BROWN: Had it not been for the very vibrant presence of the autistic and disabled communities online, I never would have been able to connect not only with people who were like me and shared experiences with me, but also with ideas that were able to politicize my understanding of my identity as an autistic and disabled person.

KATIE TOTH: Thank you so much Lydia.

LYDIA BROWN: You too, thank you very much, have a wonderful day.

KATIE TOTH: Lydia Brown is an autistic disability rights activist. She was named a Champion of Change by the White House in 2013.

12 March 2014

I am autistic, and I am obsessed with violence.

Trigger warning: Discussion of murder, other violence, ableism, various mass shootings, mention of rape, discussion of forced psychiatric treatment, brief description of the JRC, terrorism, 9/11, probably a lot of other triggers.

I am autistic, and I am obsessed with violence.
A response to Andrew Solomon's article about his interviews with Peter Lanza in The New Yorker 

An old man falls to his death from a cliff, staring in horror and despair at his loved one standing on the edge.

This is one of my first memories of playing pretend games with my younger sister.

In other pretend games, I wanted to be a man wrongfully accused of being a spy and then sentenced to death, or sometimes a robber caught by the police and then sent to prison. In preschool, I became obsessed with Disney’s Snow White. One day at school, I gave everyone little clumps of play dough and told them it was poisoned, just like the poisoned apple in the movie. The teacher called my parents.

In second grade, I started a pretend game with my friends where my character drank poisoned water, turned into a demon, and started chasing her children. My first stories, written between kindergarten and sixth grade, involved abandoned children, abusive siblings, poisonings, assassinations, prison escapes, and horrible torture.

In eighth grade, I wrote my first novel. The plotline follows the tyrannical dictator of one country who decides to murder a well-loved official in the country next door, frame someone else for the crime, and then use the distraction as an excuse to invade.

The same year, I read Helter Skelter, the true crime story of the Charles Manson cult murders written by Vincent Bugliosi, who was the prosecutor in the case. When I brought the book to school, one of the teachers took me aside and told me that was inappropriate reading.

When I started high school, I wrote my second novel, which starts with the assassination of the U.S. President by a terrorist group.

Image description: A very young me, fifth grade, sitting in the classroom with my sleeve against my lips, reading a book in the Animorphs series while other books and binders are piled on my desk. Photo by Rebecca Taplin. I'm wearing a school uniform, long sleeve maroon polo shirt, khaki pants. Behind me are shelves with messily arranged binders and notebooks.

After the Virginia Tech shootings by Seung-Hui Cho, Cho’s writing assignments became a huge deal in the media. His two short plays were full of profanity and violence. I read them when one news source uploaded copies online.

I didn’t know how to express the feelings I had at the time, but I think I’m beginning to understand now.

This week, The New Yorker ran an exclusive article by Andrew Solomon about his interviews with Peter Lanza, the father of the Sandy Hook shooter. In parts of the article, Solomon lingers on Adam Lanza’s apparent obsession with violence. According to Peter, his son was obsessed with genocide, serial killers, and mass murder. He wrote extremely violent fiction on top of reading extensively about other people’s real violence.

Solomon, who is also the author of the recent nonfiction book Far From The Tree (problematic for other reasons), wonders whether these should have been taken as warning signs. Peter is more direct when he talks about his son and whether his killing spree could have been predicted, and presumably stopped, before it happened.

I read Solomon’s descriptions of Adam, and I was crying because most of what he wrote could have been written about me if you changed the names. When he suggested that Adam’s obsession with reading and writing about extreme violence could have been a warning sign, I became terrified. Not because I’m afraid that people in power will start using that as an excuse for hurting people like me, but because I know they already do and I’m afraid it will happen even more.

Believe me, I understand what it’s like to be desperate for answers, for an explanation, when tragedy happens. While I am not the surviving relative of a high-profile mass murderer, I experience total devastation and complete obsession with finding an explanation in the aftermath of any outbreak of horrible violence. Every time. It’s hard to put the feeling into words, but the phrases that come to mind are ones like these: a thousand punches to the gut, complete frantic overload in my brain, nameless things dismantle.

Like many other autistics, I am deeply empathetic, and easily and often overwhelmed by emotional overload. I experience the emotions of people around me – no matter whether I know them or whether they’re strangers – as though they are my own emotions, and that’s on top of and combined with the ones that came from me first.

I was only eight years old when September 11 happened, but as an American citizen living near Boston, it would have been impossible for the terrorist attacks not to affect me.

I say I understand the desperate, obsessive search for answers because I have lived it.

The events of September 11 lit a fire in me and I became desperate to understand, intellectually and emotionally, just why it happened and what reasons the attackers had when they did it. For the next ten years, I became obsessed with the topic of Islamic-inspired terrorism. If an article, book, or website existed that covered the topic – no matter whose point of view it was from – I read every word with fascination. That interest led me to explore the history and reality of other forms of terrorism, including Christian-inspired terrorism, state-sponsored terrorism, eco-terrorism, just about any kind of terrorism that’s ever been named.

The same interest also led me to explore Islam itself as a religion, as the basis for many cultures and civilizations, and as a social and legal system. At the same time, I also became extremely interested in learning about national security policy, counterterrorism operations, and the role of anti-brown racism and Islamophobia as tools of white supremacy and American imperialism. By the time I was in twelfth grade, I decided that I wanted to study Islamic Studies in college and later go on to study for a PhD focusing on Sufi music in Pakistan.

Right now, I’m an Arabic major studying abroad in Amman, Jordan, and this is a direct result of my long obsession with understanding why and how September 11 happened.

Image description: Me with serious expression wearing a gray t-shirt against a black background, holding both my arms in front of my body. Text that I wrote in black pen says, "I don't understand how many people can hate" in English on one arm and in Arabic on the other arm. Photo by Robert X. Fogarty for the Dear World Project at Georgetown University in March 2012. 

After the Virginia Tech shootings, I read news articles that described Seung-Hui Cho as a socially awkward loner who had been bullied in the past. As much as I empathized with his victims and their living loved ones, I also instinctively empathized with him too.

This doesn’t mean that I’m somehow okay with murder or that I think he’s less guilty or that his crimes should be excused or ignored. It just means that my empathy is not selective, and I don’t think that that’s a bad thing.

Both Peter Lanza and Andrew Solomon said outright that autism shouldn’t be treated as if it’s related to Adam’s killing spree. But that doesn’t change the tone of the article at all, which talks about Adam’s diagnosis and various autistic characteristics in a way that reminds me of a freak show, or a post-mortem zoo exhibit. If the fact that Adam was autistic isn’t related to the fact that he killed twenty-six people, then why spend so much time focusing on his autistic traits in an article that’s mostly about his father’s attempt to figure out why and how this happened?

Plenty of readers will read the disclaimer that autism didn’t play a role in the killing spree, and they’ll roll their eyes or shake their heads or something like that, because they’ll read the same damn article and they’ll ask the same damn question, only their answer will be different. Their conclusion will be, of course it was relevant. Of course it was related. Some people will be aware that they’ve reached that conclusion, and other people will do it subconsciously. The result will be the same, though.

They’ll read about the report from a professional that said Adam was more likely to become a victim, and they’ll laugh. They’ll laugh even though it’s true. Of course, statistics don’t change the fact that he actually became a victimizer, but statistically, overall, people like him and people like me are at such high risk of becoming victims of violence and abuse. That’s true across the board for disabled people, no matter whether we’re talking about autism or mental illness. You don’t have to read academic studies to know that (though the studies do exist) because if you live in a society where one way of existing is normal and everything else is treated as less than, anyone who falls into that “everything else” category is going to be more vulnerable. That’s the way systems of power work.

Solomon may have intended to try to humanize both Peter and Adam in his article. He probably intended to do the same thing with the many different types of people he wrote about in Far From The Tree. But his intentions don’t change the reality of his writing, which, for me, is completely devastating and completely dehumanizing. And not just for autistics but for people with mental illness too. Autistics got a half-hearted disclaimer that autism isn’t related to violence. People with mental illness got thrown under the bus.

And the best phrase I can think of to describe how he talks in so much detail about Adam’s sensory aversions to sounds and textures is “morbid fascination.” In the course of my activism, I’ve met so many people, most but not all autistic, who could also fit a lot of these descriptions perfectly too.

One of my favorite hobbies is text-based roleplaying, which is basically like writing stories but with other people. Some people treat it more like a competitive game, and other people like to treat it more like a big group writing project better. The roleplays that interest me the most are the ones that explore the same topics that I’m interested in outside roleplay: state violence, terrorism, torture, abuse, human rights violations, rape and other sexual violence, and mass murder.

I’m writing my seventh novel right now. Much of the novel focuses on war crimes and genocide along ethnic and religious lines.

If you didn’t know me, if you read Andrew Solomon’s article and the hundreds of others like it, if you didn’t understand that it’s totally possible to be fascinated and obsessed with individual and systemic violence and yet not be violent personally, then you might wonder too if I’m going to be the next Adam Lanza or Anders Behring Breivik or Seung-Hui Cho or James Holmes.

When I was in tenth grade, I was called into an administrator’s office and accused of planning a school shooting. When I told him that of course I wasn’t planning a school shooting, he pointed out that I seemed to be obsessed with weapons and violence, and then he asked me if I was sure I’d never thought about actually hurting someone.

When I was in twelfth grade, my mom told me that there were people in the church who thought I was planning to join Al Qaeda or some other terrorist group.

These things are real, and they prove to me that my fears – both for myself and other people – aren’t unfounded.

Image description: Me wearing a white t-shirt, standing in a room with windows facing a hallway with elevators and various college flyers. I'm looking down and holding a sign handwritten in purple ink that says, "I'm not afraid to say I'm autistic." Photo by Shain Neumeier in December 2012.

I don’t claim to understand everyone’s motives. If I did, there wouldn’t be any more obsessive quests for answers after each and every act of mass violence I’ve ever learned about since September 11.

But I can say with certainty that it’s not mental illness or autism or an interest in violence or being bullied or social awkwardness or violent roleplaying or violent video games or violent creative writing that lead to mass murder. Those aren’t warning signs. They shouldn’t be treated as warning signs.

There’s so much ableism and ageism wrapped up in the assumption that these things are somehow predictors of future violence. Ironically, those same assumptions are used to justify real violence against people like me, and often by the people who in theory are supposed to protect us.

Does Peter Lanza have a right to his opinions, thoughts, and emotions? Of course he does. I’m the last person to say that his experiences and emotions are not valid.

But that doesn’t make them any less hurtful. It doesn’t make Andrew Solomon’s article any less painful.

The two most painful things in that article for me to read were when Solomon asked Peter what the family did about a funeral for Adam, and Peter said that no one would ever know, and then when Peter said that he wishes Adam had never been born.

Maybe the family did host a funeral for Adam. Maybe they didn’t. I wasn’t there during the interview, so I don’t know how Peter said that comment, but at least in writing, it came across as so cold and so callous, and I – I couldn’t form words.

And as to the second comment – we have no way of knowing when someone is born if that person is going to be a wonderful amazing human being who helps many people or if that person is going to turn into a horrible person who does horrible things to other people. It’s so easy to say after the fact that you wish someone hadn’t been born.

But when the parent of a young man who obviously did have many disabilities says that, even though his son was a mass murderer who killed twenty children, just how close in time this article was published to the March 1 vigils in memory of hundreds of disabled people (plenty of them autistic) murdered by their parents only gives this statement a chilling underline.

Image description: Me wearing a dark blue winter coat, a beige suit jacket, and an ochre shirt, with a blue lanyard and beige gloves, facing slightly away from the camera while speaking. I'm standing in front of a large poster that says "Mourn for the Dead ...And Fight Like Hell" for the Living followed by a list of victims' names, ages at death, and manner of murder. Photo by Kory Otto-Jacobs at DC Day of Mourning Vigil in Farragut Square on Friday 1 March 2013 as part of the National Day of Mourning for disabled people murdered by caregivers and family members.

In the interview, Peter Lanza talked quite a bit about how Adam never came to terms with the Asperger’s/autistic diagnosis.

There’s no way to know, but I can’t help but wonder whether being able to accept being autistic and be around other affirming autistic people might have changed the course of events.

For all the constant media pattern of assuming that someone who kills a lot of people must be autistic or mentally ill, two of Adam Lanza’s victims, Josephine “Joey” Gay and Dylan Hockley, were autistic too.

In the rush to railroad autistic people, the media often conveniently forgets that fact.

Both Andrew Solomon and Peter Lanza kept emphasizing that maybe if Adam had received treatment, this might not have happened. I can’t underscore enough how damaging this is for so many people.

First of all, Representative Tim Murphy’s bill in Congress right now, if passed, will severely cut funding for community-based programs supporting people with mental illnesses as well as the advocacy agencies that exist to protect people’s rights.

This bill comes after his hearing almost an entire year ago when witness after witness kept testifying to his committee about how horrible and dangerous people with mental illnesses are, and only one brave witness dared say something different.

Secondly, the sad and extremely violent reality is that the vast majority of therapy and program options for people with mental illness are coercive, demeaning, and paternalistic.

Thirdly, this article reinforces the social presumption that the default option for mental illness is and should be psychiatric treatment. And while I absolutely support the right of anyone who wants psychiatric treatment of any kind to access that treatment on their own terms, the reality is that not everyone wants to go that route and that’s okay.

Fourthly, there is the reality that this article, written by a famous journalist in a well-known publication, will be treated as an authority, and that the statements in it can and will lead to even more stigma and less voluntary options for people who do seek out psychiatric treatment.

These are realities and consequences that profoundly disturb me.

I can tell you why I am obsessed with violence.

It is because I am also completely and absolutely committed to the ideal of justice.

There was a long time after September 11 when I dreamed about a career in counterterrorism, with the idea that I could help stop future attacks.

The broad theme of my work for the past five years has been addressing violence against disabled people, especially disabled people made even more vulnerable because they also happen to be queer, trans, poor, immigrants, or people of color. Violence against us happens all the time, both by other people in the community and by government forces.

My work is emotionally exhausting.

Every so often, I receive an email out of nowhere from someone asking for help because they or their kid are in an abusive situation at school or work.

Writing and roleplaying about individual and systemic violence, and how it impacts everyone in the community, helps me process my emotions. In fact, it’s the only thing that actually works for me. It’s not that I take sadistic pleasure out of writing about violent things or that I secretly wish I could do violent things to people I’ve met.

It’s part of the same obsession with understanding why and how and what next. I wasn’t exaggerating when I said that I understand the desperate search for answers in the wake of violence. That desperate search has been the narrative for much of my conscious life.

Image description: Shain Neumeier, white person with short blond hair and glasses, and I standing on a traffic island in the middle of a multi-lane highway on an overcast day. We're holding hand-drawn and colored signs to protest the abusive Judge Rotenberg Center, which uses painful electric shock as punishment/behavioral modification for disabled residents. Shain's sign says "Stop the Shocks" with lightning bolts cutting through the o's, and I'm holding two signs, one that says "People not Experiments" and the other that says "Shocked for... hugging staff, swearing, nagging, getting out of seat, taking off coat, screaming, tensing up, closing eyes, raising hand. Ban the GED [electric shock device]." Photo by Taylor C. Hall, January 2013.

In the end, I’ve started asking different questions. It’s less often, “Why did this mass tragedy happen?” and more often, “Why do people insist that the only people capable of committing such horrible crimes must be an Other?” and “Why do we treat specific instances of mass tragedies as both more important and more horrible than the continuous and brutal violence against marginalized people?”

I don’t mean to belittle the real victimhood of people killed by mass murderers or the pain for their living loved ones. I don’t mean to belittle the internal struggle that must happen for anyone who finds out someone they loved or knew well was responsible for those killings either.

But the questions are worth asking because they, too, carry life or death consequences. They carry consequences for my life and my experiences, and they carry consequences for those of so many of my friends and colleagues too.  

I don’t want my children to grow up in a world where they have to worry about whether their teachers or bosses will peg them as the next mass shooters if they just happen to be loners, socially awkward, interested in violent games, autistic, or mentally ill. If my children are autistic or mentally ill or both, I don’t want them to grow up in a world where their humanity is questioned every single day, or where police brutality based on their disability status could end their lives.

The fact that much of the response to a horrific act of violence has been to encourage more violence is not merely astounding, but extremely sad.

The worst part of all of this is knowing that no matter what I say or do or write here, the people who have power in media and politics will carry on with their dehumanizing campaign, and I – we – don’t stand a chance when these things are simply accepted as true and normal and how things are.

If you’re reading this essay, all I can ask is that you consider an alternative narrative. Instead of trying to play the blame game for violence – autistics one day, people with mental illness the next, every young Black man the week after that – can we start to focus on healing within ourselves and our communities? Can we cope with our trauma in less hurtful ways?

06 March 2014

New Publication: Torture in Healthcare Settings

Loyal readers, first-time visitors, occasional maybe-I-can-check-Autistic-Hoya-because-I'm-bored folks, I'm super excited this week because an article I wrote has been published in a new compilation from the Anti-Torture Initiative, housed at the Center for Human Rights and Humanitarian Law at American University Washington College of Law. The complete PDF of the full compilation was published to the Anti-Torture Initiative's website this week and can be accessed by clicking here. (Alternative link, if it works better to copy and paste: http://goo.gl/UPsx2w )

Why is this awesome, you ask? Because the publication actually explores many issues impacting multiple marginalized groups who face torture, abuse, and discrimination in healthcare, including in the areas of reproductive health, healthcare for trans* and queer people, access to healthcare for racial and ethnic minorities, and healthcare, treatment, and services for people with psychosocial and intellectual disabilities. More importantly, many of the authors offer specific recommendations for providers and policymakers to address existing issues and prevent future abuses.

My chapter is called, "Compliance is Unreasonable: The Human Rights Implications of Compliance-Based Behavioral Interventions under the Convention Against Torture and the Convention on the Rights of Persons with Disabilities," and I'm thrilled that it's here. If you ever wanted to read (yet something else that I've written) about the inherent abuse and ableism embedded in the systematic use of restraints, seclusions, aversives, and applied behavior analysis as a means of ensuring compliance from their disabled victims, you've got a lovely chance.

Support from kickass activists Shain Neumeier and Ari Ne'eman went a long way in helping me with the document, too. Also the world is better because Tina Minkowitz, International Representative of the World Network of Users and Survivors of Psychiatry whose article is also published here, lives in it.

I hope everyone who would like to has a chance to read this groundbreaking report, and shares it widely! Comments for my article are also more than welcome.

(All of the chapters in this publication, needless to say, carry trigger warnings for often graphic descriptions of abusive situations and practices, often spurred by racism, sexism, queerphobia, transphobia, and ableism, among other factors.)

Image description: A screengrab of the cover of the publication, with the title Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture's 2013 Thematic Report on a blue background at the top, a black and white photograph of a patient lying on a bed with linens in an institutional room with a window and heater in the middle, and then at the bottom against teal backgrounds in two different shades, the logos for the American University Washington College of Law and then the Center for Human Rights and Humanitarian Law: Anti-Torture Initiative.

The ATI's blurb is here:

The Anti-Torture Initiative’s first publication brings together contributions by more than thirty international experts in response to Special Rapporteur Juan E Méndez’s provocative 2013 thematic report on torture and other abusive practices in healthcare settings.  The articles featured in this unique volume reflect and expand upon key aspects of the Special Rapporteur’s report as well as on implementation of recommendations contained therein.  Each piece provides novel insights into essential topics and pressing issues at the forefront of the intersecting legal, medical, and policy fields. The questions raised by the Special Rapporteur’s report, and the array of innovative perspectives offered in response by each contributing author, illustrate a profound commitment to tackling the challenges that continue to arise in promoting and protecting the human rights of persons in diverse healthcare settings globally. 
The volume features an introduction by the Special Rapporteur on Torture, as well as articles by the UN Special Rapporteur on the Right to Health, the Chairman of the UN Committee against Torture, as well as renowned academics, legal, medical, and policy experts, and human rights advocates. 
The compilation explores some of the following topics:
  • Interpretative and guiding principles and the evolution and application of lack of legal capacity as a doorway for torture and other ill-treatment
  • Emerging recognition of different forms of abuses in health-care settings as torture and other ill-treatment, including compulsory detention for medical conditions;  Denial of pain relief
  • The treatment of persons with psycho-social disabilities or intellectual disabilities globally
  • Special protection of minority and marginalized groups and individuals as a critical component of the obligation to prevent torture and other ill-treatment;  
  • Reproductive rights violations as torture and ill treatment
  • The relationship and interplay between the Convention against Torture, the international prohibition against torture, and the Convention on the Rights of Persons with Disabilities
  • Recognition, enforcement and accountability for various abusive practices in health-care settings and the need to obtain redress and fair and adequate compensation, including the means for as full rehabilitation as possible.

SO. If I have successfully managed to pique your curiosity about the new report, I've copied the full table of contents below to better explain the various chapters.

Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture's 2013 Thematic Report


vii -  Acknowledgements

ix - About the Center for Human Rights & Humanitarian Law and the Anti-Torture Initiative

xi - About the Mandate of the UN Special Rapporteur on Torture

xiii - Foreword (Hadar Harris)

xv - Introduction (Juan E. Méndez)

1 - I. The Prohibition of Torture and the Right to Health: An Overview

3 - A Contribution by the Special Rapporteur on the Right to Health: Right to Health and Freedom from Torture and Ill-Treatment in Health Care Settings (Anand Grover & Jamshid Gaziyev)

19 - The Problem of Torture in Health Care (Tamar Ezer, Jonathan Cohen, Ryan Quinn)

43 - The U.N. Committee Against Torture and the Eradication of Torture in Health Care Settings (Claudio Grossman)

49 - II. Abusive Practices in Health Care Settings and International Human Rights Law: Reflections

51 - Torture or Ill-Treatment in Reproductive Health Care: A Form of Gender Discrimination (Luisa Cabal & Amanda McRae)

65 - Poor Access to Comprehensive Prenatal Care, Including Opiate Substitution Treatment: A Form of Ill-Treatment for Women with Drug Dependence During Pregnancy (Mikhail Golichenko & Sandra Ka Hon Chu)

73 - Consent Signed with Invisible Ink: Sterilization of Trans* People and Legal Gender Recognition (Micah Grzywnowicz)

83 - When Healing and Comforting Hands Turn Hostile and Harmful: Homophobia and Transphobia in Health Care Centers (Rafael Mazin)

91 - Medical Treatment of People with Intersex Conditions as Torture and Cruel, Inhuman, or Degrading Treatment or Punishment (Anne Tamar-Mattis)

105 - Torturous “Treatment?” Assessing Government and Donor Responsibilities for Abuses in Drug Detention Centers from a Human Rights Perspective (Rebecca Schleifer & Richard Elliott)

123 - Privatizing Cruelty—Torture, Inhumane and Degrading Treatment in Non-Governmental Drug Rehabilitation Centers (Roxanne Saucier & Daniel Wolfe)

133 - Denial of Pain Treatment and the Prohibition Against Torture and Ill-Treatment (Diederik Lohman & Tamar Ezer)

141 - Joint Statement from the American Psychiatric Association and the World Psychiatric Association in Response to the Report of the Special Rapporteur

151 - Response by the Special Rapporteur to the Joint Statement by the American Psychiatric Association and the World Psychiatric Association

155 - An International Comparison of Mechanisms in Mental Health Monitoring (Judy Laing & Rachel Murray)

169 - Implementing a Paradigm Shift: Implementing the Convention on the Rights of Persons with Disabilities in the Context of Mental Disability Law (Peter Bartlett)

181 - Compliance is Unreasonable: The Human Rights Implications of Compliance-Based Behavioral Interventions under the Convention Against Torture and the Convention on the Rights of Persons with Disabilities (Lydia Brown)

195 - “You That Hide Behind Walls:” The Relationship Between the Convention on the Rights of Persons with Disabilities and the Convention Against Torture and the Treatment of Institutionalized Forensic Patients (Professor Michael L. Perlin & Meredith R. Schriver)

219 - On Torture, Ill-Treatment and People with Psychosocial and Intellectual Disabilities: Some Thoughts About the Report of the Special Rapporteur (Robert Dinerstein)

227 - A Response to the Report by Juan E. Méndez, Special Rapporteur on Torture, Dealing with Torture in the Context of Health Care, as it Pertains to Nonconsensual Psychiatric Interventions (Tina Minkowitz)

247 - The Role of Global Psychiatry in Advancing Human Rights (Oliver Lewis)

263 - Torture in Health Care Settings: Urgent Issues and Challenging Questions (Yuval Ginbar & James Welsh)

277 - Legal Capacity, Informed Consent, and Stigmatized Identities: Reform and Remedy Efforts in Central and Eastern Europe (Claude Cahn)

291 - Torture and Ill-Treatment Against African Persons with Psychosocial Disabilities In and Out of Health Care Settings (Shuaib Chalklen, Hisayo Katsui, Masa Anisic)

299 - Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment on Torture in Healthcare Settings (Juan E. Méndez)

26 February 2014

GUSA Exec 2014 Disability Questionnaire: Thomas Lloyd and Jimmy Ramirez

I have condensed the questions, which appeared in long-form in the questionnaire sent to candidates with background information and examples, to highlight each candidate's answer. These are the responses provided by Thomas and Jimmy. You can also read the other responses from Trevor and Omika, Zach and Dan, and Ben and Sam.

Image description: Thomas Lloyd, a young white man with short blond hair, and Jimmy Ramirez, a young Latino man with short dark brown hair and glasses, smiling and laughing at the camera. They are in Lau with many books on shelves visible behind them. The test in the middle at the bottom says in large letters, THOMAS AND JIMMY FOR GUSA. 

Question 1

What would you do or change to combat ableism (disability oppression, prejudice against the disabled) and make Georgetown a more welcoming and inclusive campus for disabled students if elected?

A culture that permits Ableism, like most forms of discrimination, is made up of language, micro-aggressions, and formal systems of oppression. Unlike many of the other D7(+) identities though, ableism isn’t as visibly addressed or unwelcome at Georgetown. Students and professors use many ableist phrases in classrooms, without even someone batting an eyelash. Discussions and events about disability are held without any disabled advocates or just disabled people in the planning conversation. This often allows disability to be seen solely in medical terms, rather than as an element of diversity, that our society should make efforts to work to remove unfair burden from. And when a disabled student or faculty or staff member has to endure all of these microagressions or more overt forms of oppression, such as being forced to take an MLOA, or having few resources other than the ARC, they have few means of seeking recourse.

To combat ableism, there are a few things that are necessary: education, visibility, and advocacy. Before getting in to how our platform, and our experiences influence all three, there is one thing that is essential to point out. Jimmy as a homeless advocate, and myself as an LGBTQ advocate, we believe in a principle that you phrase clearly in your work: nothing about us, without us. We acknowledge that good allyship, requires that we allow those who case the most about issues be the ones to take the lead and direct us on where to put our resources. These suggestions then, are always subject to review and revision by the disabled advocates that we would want to recruit to our executive.

On the education end, we would take a third of the GUSA fund’s budget and allocate it to the “What’s a Hoya” fund. The What’s a Hoya program has drawn hundreds of freshmen in to GUSA sponsored talks with faculty and staff on issues of 1) Safety 2) Mentorship 3) Diversity. What we want to do is tie thousands of dollars of funding and that powerful housing incentive to student events that are put on by student leaders and groups on these issues. Any event then on disability, put on by the disabled advocates and or their allies, would not only get a higher profile and funding level, but also would reach a whole new range of students from their first year here at the hilltop.

Also on the education end, we would be happy to use any excess executive discretionary funding, or excess SAO funding, to prepare a media campaign to end the use of certain phrases and words, including those that we may not even think about today (a list based off of your glossary of ableist terms and phrases). Any executive communication would be checked for use of any of these phrases or words to ensure that the executive itself does not commit any micro-aggressions.

Finally on the education end, in our platform, and through our endorsements, we have committed yourself to advocating for certain parts of the Cura Personalis initiative, perhaps incorporating studies on disability in to new or extant courses (obviously sensitive to make sure these classes don’t reinforce systems of oppression) is a way to add this awareness to our extant channels of advocacy.

Visibility is accomplished not just with the language campaign that would take place, but also in whom we would recruit to the executive. As the President of the most diverse Pride Board in years, I have learned how important it is to have an organization be lead by a chorus of different voices, who on occasion help me check and unpack my own privilege, but who also bring fascinating perspectives and ideas to the table that help us make a change that can include everyone. Jimmy also understands this, as the student leader who spear-headed the diversity initiative in the Corp so that they would track demographic information as a company/ We would recruit a similarly diverse exec, and while that means in part to a secretary position on disability, and a disabled representative on the What’s a Hoya Fund/Program, but also to any other position to which a disabled student would apply on the exec for which they have a passion and are qualified, we would make every attempt to ensure that they are supported. Recognizing disabled students AND faculty through our Hoya of the Week, AND Faculty of the Week programs, could also help raise the profile of disabled students at Georgetown.

As for advocacy, well, all of the above is part of advocacy, but we would want to encourage all programs related to disability have an advocacy or administrative component where possible. When Pride brought Mia Mingus comes to mind, where not only did she speak to students, but she also joined administrators for a luncheon, where she could discuss disability rights with them, beginning to give them a better understanding of disability justice. More on advocacy will follow in the later questions.

Question 2

What would you do if elected to ensure that conversations and initiatives on diversity, especially those managed or initiated by the GUSA Executive, meaningfully include disability and disabled members of the campus community?

As RA’s Jimmy and I have had to spend at least an entire day learning about each of the D7 identities. Now, one week does not an advocate make, and we did not limit our ally ship to learning during this one day. That said we do know that having these conversations with the RA staff greatly increased the sensitivity of RAs to ableism, and made them better equipped to deal with it when confronted. At the start of the new exec, I would seek to have all members of the exec undergo similar D7 based team building exercises, especially during the summer term. This would make the executive more sensitive to issues important to the disability rights community, but also set a tone in any writings, advocacy, and conversations going forward.

As for campus initiatives, the approach of the What’s a Hoya fund, and its housing incentive assignment process, would first and foremost believe in the principle of “nothing about us without us.” The idea of turning the What’s a Hoya program over to the student leaders, such as yourself, is to ensure that not only are the conversations about identities being had in a way that truly represents those identities but also allows those advocates to pick the topic of conversation. We are creating the financial and publicity incentives for groups to address disability going forward.

Should the campaigns I listed in #1 be carried out, it would make it more difficult for conversations to include ableist language, or to further oppress disabled people.

Question 3

If elected, what steps will you take to advocate on behalf of a plan to create and sustain a Disability Cultural Center at Georgetown?

WE would work with student leaders to help create a clear set of steps for the university to take to create the DCC. This will require securing funding, space, and staff among other things, but we are enthusiastic to offer any and all help that you or any other student leader would require to accomplish those things. We would push for spaces in new buildings to be included, or for existing spaces that are not used to be set aside for the establishment of the DCC. We would finance more publications similar to the pamphlet you designed to raise awareness about the effort. As per “nothing about us without us” we would want to set up meetings with administrators as soon as possible, before the year ends, including all stakeholders including those outside of the executive in the meetings. 

My only experience or knowledge of creating a center rather, is the LGBTQ resource center, which we all know was born out of massive protests after a period of great violence. Hopefully, we won’t experience a similar set of hate crimes that could breed that sense of urgency. Instead, we would highlight cases of ableism to the administration to continue to make our case. In the interim, we would want to facilitate the coordination of disability related programming and resources as a DCC ultimately would. This includes taking elements of the no wrong door campaign and incorporating them in to easier to digest media, and marking all disability related What’s a Hoya events in our GUSA weekly email. 

Question 4

What steps will you take, if elected, to increase visibility and representation of disabled students (both with apparent and invisible disabilities) in leadership roles on campus, whether in GUSA or elsewhere?

We would recruit disabled students (both with apparent and invisible disabilities) to the executive board, including in a continuation of the GUSA undersecretary for disability affairs, and with their help choose the appropriate people to serve on the “What’s a Hoya” Board to make sure that the conversation about disability is one that is never left out and never misrepresented.

We have in our budget a $1500 allocation for co-sponsorships and programs related to disability in addition to the larger What’s a Hoya Fund. This is money that could be used to sponsor an initiative to get more students with disabilities to run for leadership positions in different student groups, or to support events that raise the profile of extant student leaders with disabilities. 

Question 5

What steps will you take if elected to investigate the full range of accessibility barriers at Georgetown and advocate for meaningful progress from the administration in addressing them?

That $1500 allocation can again be used to help conduct this survey of barriers to access at Georgetown, we would hand off any and all lists to those in facilities, planning, and residential education, to ensure that no future building has the same barriers to access that we have already identified, and that we can begin o phase out the barriers that already exist. Even without that allocation, we would work to make sure that all new plans for buildings, and any long term planning involves investment in accessible spaces. 

When planning Mia Mingus, I learned about the difficulty (and price) of securing an ASL interpreter. It should be a priority of the University and of all funding boards to have money set aside for making events open to everyone. I would advocate at the budget summit, or at least in future budget summits, for the establishment of a separate fund be set aside for events to be made more accessible to all students, and reduce the barriers to providing any form of interpretation for any student group.  

Question 6

Conversations about disability that occur in classes, student organization sponsored events, departmental sponsored events, and administration sponsored programming frequently omit the perspectives of disabled people both during the planning process and during the actual event. What would you do if elected to advocate for meaningful inclusion of disabled people in conversations about us on campus?

As I think all of the above answers have demonstrated, we have a commitment to “nothing about us without us” for all types of diversity. Events that GUSA sponsors would be put on by disabled student leaders themselves, and advertised with our complete student listserv. Attendance at these events would sky-rocket given the What’s A Hoya incentive, which is currently drawing hundreds of freshmen in to packed rooms to hear faculty panels on mentorship. We have the finances and the will to recruit and assist any and all disabled students who want a leadership position, so that more of these events will take place. Our language campaign, and team building exercises, will begin to build a sensitivity in to this campus. With all of these steps, we hope to make Georgetown more accessible to all.

GUSA Exec 2014 Disability Questionnaire: Ben Weiss and Sam Greco

I have condensed the questions, which appeared in long-form in the questionnaire sent to candidates with background information and examples, to highlight each candidate's answer. These are the responses provided by Ben and Sam. You can also read responses from Trevor and Omika, Zach and Dan, and Thomas and Jimmy.

Image description: Sam Greco, a young white man with short light brown hair, and Ben Weiss, a young white man with dark brown hair, sitting on the steps in front of Copley Hall's gray stone facade, smiling at the camera. At the bottom is a dark blue banner with white text with the Facebook icon for Ben and Sam for GUSA, the Twitter icon for @VoteBenandSam #achieveyours and the website benandsamforgusa.com, with large text BEN AND SAM. 

Question 1

What would you do or change to combat ableism (disability oppression, prejudice against the disabled) and make Georgetown a more welcoming and inclusive campus for disabled students if elected?

Our main priority will be is empowering each individual student so they can achieve their goals. We will use this same approach for every student and every community at Georgetown. We will provide the resources disabled students need so that their Georgetown experience can be the best possible.  It is self-evident that Georgetown does not currently provide the resources that ensure accessibility at Georgetown. Unfortunately, real change will only come through a cultural shift in the collective Georgetown psyche.

The first step to combating the problem of ableism on Georgetown’s campus is to start a dialogue around the issue that ensures that all students recognize the causes of the current, unacceptable campus attitude.  We recognize disability as an issue of diversity, in which much-needed campus dialogue can only come through engaging students of diverse backgrounds. We plan to use the unique nature of GUSA as a bully pulpit to galvanize the university’s attention and dialogue around disability issues, among others. With this in mind, our cabinet will work with Lecture Fund to bring in speakers on ableism to grow this dialogue on campus.

We hope that by supporting a campus-wide accessibility survey that you worked on over the past semester, we will be able to assess the current campus sentiment, and then identify the problem areas that are revealed. This will produce a very productive narrative regarding the current status on campus.  We will engage student leaders from all across campus in these discussions. We plan to be facilitators to these discussion, but envision the greatest stakeholders as the leaders of these discussions.

Furthermore, the No Wrong Door guide should be provided at New Student Orientation so that students are immediately aware of the resources that are available to them. The location of these resources should become second nature to anyone that needs them, and by providing them in this guide, we  can help students feel at home.

We hope you would engage with our administration and help our GUSA guide dialogue and policy around ableism  at Georgetown  This is not a topic limited to a specific group of people.  The discussion needs to involve the entire campus, and it starts with involving our entire cabinet.  In initiatives they are pursuing, accessibility should be in the forefront of their planning so that all Georgetown students can be involved in any student program or initiative.

Question 2

What would you do if elected to ensure that conversations and initiatives on diversity, especially those managed or initiated by the GUSA Executive, meaningfully include disability and disabled members of the campus community?

First, we will create a Secretary for Disability within our cabinet to advocate specifically for disabled members of the campus community. This person’s primary responsibility will be to converse with members of the disabled community and ensure that all involved parties are consulted meaningful and regularly. Based on these conversations, the Secretary will advocate for the initiatives put forward by those with disabilities.

Additionally, we will work to publicize and encourage events through our access to benefits reform and the creation of a personalizable events calendar on HoyaLife.com. Access to benefits reform will allow individual students to reserve rooms, rent equipment from the CSE or SAC, and have access to select benefits that recognized student groups already have. This will allow students to reserve adequate space and hold more successful events that can be supported, at least in part, by Georgetown.

The second policy piece, the customizable calendar of events on HoyaLife.com, will allow any student to pick what topic areas interest them and receive emails regarding events, speakers, and opportunities related to those interests. For disabled students and those wanting to be involved in the conversation, this calendar will allow them to easily learn about events. These students will then be able to effectively educate themselves and contribute to the continual conversation. We will shape our policies heavily on input from the conversations at these events.

For students who cannot access these resources online, we will provide the online resources through GUSA office  at all times

Question 3

If elected, what steps will you take to advocate on behalf of a plan to create and sustain a Disability Cultural Center at Georgetown?

As stated in our platform, we will support ongoing efforts to establish a Disability Cultural Center on Georgetown’s campus. It is essential that the Georgetown community understands the necessity for a Disability Cultural Center on campus. Through their already established relationships with Georgetown administrators as GUSA senators, we will work to initiate new conversations about the importance of funding this center to support all disabled students on campus.

Until it is, they will utilize GUSA resources to advertise cultural opportunities for disabled students at our university and expand the conversation around disability as a form of diversity. They will ensure that the voices of disabled students are heard in their ongoing mission to include every identity in the goals of student government.

As Lydia and this brochure advocating for a Disability Cultural Center at Georgetown remind us, it is an identity that has been too often forgotten in the past. We will work to change that.

Question 4

What steps will you take, if elected, to increase visibility and representation of disabled students (both with apparent and invisible disabilities) in leadership roles on campus, whether in GUSA or elsewhere?

The GUSA Executive, under both Clara and Vail and Nate and Adam, worked to increase the diversity of the GUSA Senate and Executive along a variety of axes, including improved representation of women, members of the LGBTQIA* community, and students of color. Yet there is very little representation of disabled people—either with visible or invisible disabilities—across student organizations, leadership initiatives, and GUSA.

We would be pleased to work with you and build off your advocacy for those with disabilities at Georgetown. Therefore, we will work to establish a Disability Cultural Center that would coordinate peer mentor programs, leadership training, guest lectures and symposia for students with disabilities. We hope this Cultural Center who go a long way towards ridding Georgetown of a debilitating culture of ableism that risks robbing Hoyas of individuality and identity. We hope this Cultural Center would help disabled students earn leadership roles on campus and more effectively advocate for the disabled community in general. Just as the Women’s Center seeks to ensure equity for female Hoyas and the LGBTQ resource center seeks to ensure equity for LGBTQIA*-identifying Hoyas, so too would the Disability Cultural Center seek to ensure equity for the disabled community at Georgetown.

Second, we will work to create uniform standards for accessibility at student group events, ensuring that every student has every opportunity to attend every event. This kind of accessibility for any student group event would better aid disabled students in running for leadership positions.

Finally, one of the best things that GUSA could do would be to advocate for disability reforms at Georgetown. Indeed, GUSA is unique as its institution in that it acts as the main voice of Georgetown students. We will break down GUSA’s own barriers for participation in GUSA events and elections.

We want to further empower disabled students at Georgetown by taking an active role in their representation. Our Disability Cultural Center would not only help galvanize the community around one institution, but will hopefully better focus the voices of many into one unified voice more effective in its relationship with the University administration. We look forward to hearing more from the disabled community at Georgetown in the Executive and in the last hours of this campaign.

Question 5

What steps will you take if elected to investigate the full range of accessibility barriers at Georgetown and advocate for meaningful progress from the administration in addressing them?

The issues here need to be framed in conversation with the university administration in the context of the urgency these problems prompt. A fundamental function of the administration should be to address such hurdles with definitive action and inclusion of students in the discussion. Clearly this has been lacking.

To be clear, we do not see the GUSA Executive as the solver of every problem and the arbiter of higher justice. Our view of the office in question is one of promotion and advocacy on behalf of the students. We have a number of initiatives we would like to start, but at heart, the function of GUSA is to react to wrongs suffered by the students and act as a powerful force opening dialogue with the university on how to solve these problems.

Our proposal on how to handle the issue of accessibility barriers and urge the creation of meaningful and lasting policies from the administration is to use the weight of GUSA as an elected voice of the students to open up these conversations and convey to the administration the sense of urgency with which these must be addressed. While the university may see the quality of lighting in the classroom as an issue they can push to the back of their agenda, we are here to stress the importance of addressing the quality of lighting, communicating to the university that this is an issue with serious health risks to certain students.

Our job is to be open. Any Executive ticket who cannot acknowledge the limits to their own knowledge does not deserve to appear on the ballot. As GUSA President and Vice President, we will work to be accessible, so you can come to us and tell us that the events occurring at the university are not providing disability accommodations.  In building a more open and inclusive Georgetown, we view our role as hearing everything students have to say and then fighting for them and the changes they wish to see.

When you ask us how we will investigate the full range of accessibility barriers at Georgetown, what we hear is that you and others have seen pressing issues on the Hilltop. We want to listen to what you have to say, and then solicit responses from other students who have seen similar issues. We will draw from the students for issues to pursue. Our slogan is Working for You for a reason: we intend to be your voice, with whatever weight our office may bring.

When you ask us how we will advocate for meaningful progress from the administration in addressing these barriers, we hear that you want us to stand up for you and others who for a multitude of reasons cannot stand up for themselves. Our pledge to the Georgetown community is to hear rather than simply listen, and to work with the administration. That is why we have begun to build a team involving people like GUSA Senator Abbey McNaughton, who has worked on accessibility and plans to continue working. When we pull in as many voices as possible, we can identify the pressing issues while forming a coalition of those willing to work with the administration to affect real change.

Question 6

Conversations about disability that occur in classes, student organization sponsored events, departmental sponsored events, and administration sponsored programming frequently omit the perspectives of disabled people both during the planning process and during the actual event. What would you do if elected to advocate for meaningful inclusion of disabled people in conversations about us on campus?

We believe that the heart of the issue is publicity. The Georgetown community is inherently a vibrant, active, and intellectually curious one. We want to learn. We want to understand. We want to be included in conversations so that we can better understand every issue and advocate for different student groups. Many pluralism-related events and groups receive organizational aid from GUSA and the university, but there is clearly a lack in support of disability education and awareness events.

We intend to rectify that. GUSA, and in particular the President and Vice President, should act as an arm for outreach, working for the inclusion of disabled persons in conversations and events on campus. We want to work with the administration and other student groups to centralize the events process through HoyaLife.com so all students can publicize their events and learn about other upcoming events. This will have two effects:

First, we will be able to generate publicity for these very conversations that are lacking in support. There are many at this university who are willing and yearning to be involved in such discussions, and increased publicity will strengthen these conversations while allowing for the greater participation and education our community.

The other benefit of centralizing events will create a succinct collection of upcoming programs for all students. This way, an event that focuses on disability access and advocacy can include all students in the conversation. We don’t pretend to have some higher knowledge of which programs must be bolstered and which can prosper on their own. We want to include all involved parties in the conversation so that we can determine who should participate in an event, and eventually, what policies will best serve disabled students at Georgetown.

We will work to create a proactive GUSA. Could we promise to include you and your events in a weekly email, buried under a heap of other student events? Sure, but that barely scratches the surface of what we are capable of and what a GUSA executive should be doing. We want every voice included in the policymaking process. If you feel the best course of action is to send out an all school email detailing an upcoming event, we can work to make that happen. If there is an administration-sponsored event occurring regarding disabilities that does not include disabled students and you want us to fight to change that, we’ll work to accomplish that. We want GUSA to be an organization that works for the students; we will always work for you.