Signal Boost: British Columbia: The BCCPD invites organizations to our ‘Get Prepared’ workshop.

Via Email

Fires, storms, H1N1, floods. The BC Coalition of People with Disabilities’ Emergency Preparedness Program can help.

The Get Prepared workshop will use videos, demonstrations, personal stories, and recent Lower Mainland experiences to examine emergency preparedness. We will explore the best approaches that community organizations can use in designing emergency plans that focus on people with disabilities. Krasicki & Ward Emergency Preparedness will bring a display of emergency supplies.

Learn:
– The leading approach to emergency preparedness: Functional Needs
– How to conduct safety drills and evacuations
– Tips by and from people with disabilities on what’s needed
– How to integrate emergency planning into your organization

FREE 37-page handbook: “Workplace Emergency Planning for Workers with Disabilities”

Time and Date: 12:30 – 5:00 pm, November 25th, 2010
Location: Blusson Spinal Cord Centre, 818 West 10th Avenue Vancouver BC
Cost: $65 – handbook and light refreshments included.
Hosted by the BC Coalition of People with Disabilities.
Registration Information

Registration for ‘Get Prepared’

Date: Thursday, November 25th 12:30 – 5:00 p.m.
Location: Blusson Spinal Cord Centre, 818 West 10th Ave, Vancouver
Cost: $65 includes light refreshments and “Workplace Emergency Planning for Workers with Disabilities”, a 37-page handbook.

Please click here to download the registration form and poster PDF.

The registration deadline is November 15th. Please contact sam@bccpd.bc.ca or 604-875-0188 for more information.

Unfortunately I cannot answer any questions about this event.

Recommended Reading for 22 October, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

At Astrid’s Journal, Multiplicity Myths:

I wrote this collection of myths a few years ago, intending to create a multiplicity page on my website. That never got to be, but I still like this list. I have edited some parts where appropriate.

At Tunisia Online News, Tunisian-Italian project to benefit blind people in Gafsa:

A project as part of a Tunisian-Italian partnership to promote the status and integration of the disabled in society, will soon lead to the building of a house for visually impaired and blind people in Oum Larayes in the governorate of Gafsa (South western Tunisia).

From the Los Angeles Times in the United States, Georgia settles suit on confinement of disabled people:

In a settlement that will serve as a model for enforcing the rights of the disabled, the Justice Department reached an agreement with Georgia to move many patients with mental illnesses and developmental disabilities out of the state’s notoriously dangerous psychiatric hospitals and into the community.

From 3News.co.nz, NZ offer world first service for deaf:

Until today, [15 October] New Zealanders who are hearing impaired and deaf have had to use a fax machine to make contact with 1 -1 -1.

[…]

At midday a system was switched on which allows the seven thousand members of the hearing impaired and deaf community to text for help.

From Pro Bono Australia, Judge Caps Court Costs on Disability Case -PIAC:

A decision in the Federal Court is expected to have national ramifications for public interest litigants according to the Public Interest Advocacy Centre, PIAC.

[…]

The Public Interest Advocacy Centre was acting on behalf of Julia Haraksin, who tried to book a seat on a Murrays coach from Sydney to Canberra.

Bizarrely enough, I’ve taken a Murrays bus from Sydney to Canberra myself and was just thinking about their lack of accessibility yesterday! Here’s hoping Julia Haraksin wins the case.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

‘Selfish’: House, Disability, and Agency

I’ve been rather behind on my television viewing lately, and I only recently caught up on ‘Selfish,’ the second episode of the new season of House (please be advised that this post contains significant spoilers for said episode). After watching it, I needed several weeks to ponder it before I could write about it, because it was an awful episode, and it had a whole lot of problems going on with it. I knew I wanted to open up discussion about it here, but had trouble getting a handle on how to begin.

The episode opens with a scene of a skateboarder in an indoor facility, showing off tricks for a group of wheelchair users and seemingly nondisabled adults. ‘Shredding for a Cure,’ a banner hanging in the facility alerts us. The skateboarder comes to a halt and volunteers to push one of the wheelchair users, who turns out to be her brother, around.

My hackles went up pretty much immediately. House, like seemingly every other show on television, can’t wrap its head around the idea that wheelchair users play sports. A quick YouTube search turns up a whole slew of videos of wheelchair users skating, and the opener would have been dramatically different if we’d seen someone using a wheelchair instead of a skateboard. But then, of course, we wouldn’t have had the neat hook, allowing the skater to collapse while pushing, thus setting up the medical mystery for the episode: What’s wrong with her?

Over the course of the episode, a series of diagnoses are tested and discarded. At one point, they think she needs a bone marrow transplant and a discussion about harvesting marrow from her brother is held. He, of course, is naturally excluded from this discussion, and she refuses to ask him for a donation because she thinks he ‘has it hard enough already.’

Eventually, it is determined that she has sickle cell trait. She also needs a lung, because during her rapid onset of illness, one of her lungs was very badly damaged and replaced with a transplant that started failing almost immediately. Lo and behold! Her brother is a match for a partial lung donation, but is a poor candidate for the procedure because he has muscular dystrophy, and losing a lung would shorten his life and probably degrade his quality of life.

Della, the skater, insists that she doesn’t want to ask her brother for a lung. He eventually overhears an argument and insists on donating a lung to her. Ah, how heartwarming!

Throughout the episode, her brother is repeatedly denied agency. He is told to leave her room when they discuss the need for a lung, and the parents of the children have a ferocious debate about whether they should ask  him to give a lung to his sister; no one considers approaching him to talk to him about the situation and ask him how he feels about it. I am reminded that in the United States, minors have no rights when it comes to medical care, and can be compelled to undergo procedures even if they don’t want to.

There are a whole slew of issues with the framing of this episode. Let’s start with Della, who claims to be ‘living the life her brother can’t,’ reminding us all that being a wheelchair user is The Worst Thing Ever and you are Completely Useless for Life if you use a wheelchair, but, hey, at least you’re inspiring. Obviously he could never do things like joining the science club or playing extreme sports! House reflects social attitudes when it comes to framing and thinking about disability, and this episode is a prime example of exactly the kind of message I wish pop culture would stop sending: That disability is a tragedy, that you will never be able to live the life you wanted if you are disabled, that everyone around you will have to live for you because obviously, you can’t live your own life.

And then there’s the issue with the complete denial of autonomy and agency to Hugo, the brother. He is excluded from all discussions about his sister’s medical situation that might involve his participation. People talk about him, about whether he should be asked for marrow and later a lung, about how they feel about it, but they do not talk to him. He is left to sit in the corridor. They say this is for his ‘protection,’ completely eliding the fact that he is a human being, capable of making his own decisions. Likewise, Della is denied a lot of agency; House refers to her as a ‘mindless teenybopper’ and says she’s clearly incapable of making decisions about her body and medical care.

This is not the first time House has depicted minors as patients and has made sure to remind viewers that minors are all clueless and completely unable to make sound decisions, even if they were legally able to exercise control over their medical care. It usually goes very badly, and there’s usually something infuriating and disability-related going on too; I’m reminded of the episode featuring a Cochlear implant, for example, where the patient’s mother forces her son to go through surgery even though he doesn’t want the implant. On House, disability is always terrible, and minors are always subjugated by their parents ‘because it’s the right thing to do.’

I’ve barely scratched the surface with this episode here, in the interests of not producing a small novel; if you watched it, what did you think of it? What other issues in the episode troubled you? And was the week of 27 September the worst week ever for disability on US television  (House was not the only show running a disability storyline and doing it very, very badly)?

Heel, toe

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Death: Paul Steven Miller

I’m going to copy the email I just received from Disability Rights International:

It is with great sadness, that we at Disability Rights International (DRI) mourn the death of Paul Steven Miller, a former DRI board member and a legend in the disability rights movement in the United States. Paul died at his home on October 19, 2010, following a long illness, surrounded by his family and friends.

Born with achondroplasia, a genetic condition that results in dwarfism, Paul graduated from Harvard Law School in 1986 – several years before the passage of the Americans with Disabilities Act of 1990 – and experienced firsthand the need for such legal protections when 45 law firms rejected him during his employment search, with one member of a firm telling him the reason: Their clients would think that they were running a “circus freak show.” But despite facing such overt discrimination in his early career, Paul became an internationally acclaimed expert in discrimination and disability law and was the trusted advisor on these issues to Presidents Clinton and Obama.

Following the election of Bill Clinton in 1992, Paul was appointed White House liaison to the disability community. And in 1994, Paul was appointed a Commissioner of the Equal Employment Opportunity Commission (EEOC), where he served ten years.

In 2004, Paul left the EEOC and accepted the position of professor and director of the Disability Studies Program at the University of Washington. In early 2009, Paul took a leave from the university to become Special Assistant to President Obama for managing appointments and nominations to the Department of Justice and the Department of Education. Additionally, Paul served on the Obama transition team at the Department of Labor.

Paul is survived by his wife, Jenni Mechem and his two young daughters, Naomi and Delia.

Our thoughts and love go out to them as we remember the amazing Paul Steven Miller.

Paul Steven Miller’s profile on University of Washington’s School of Law website

Paul Steven Miller’s Wikipedia page

A news report about his work from 2004

By 20 October, 2010.    deaths, disability activism, history   



“The Challenge of Mental Illness in the Justice System” – Part 1: Criminal Court

On Tuesday evening, the Chief Justice of the Supreme Court of Canada, The Right Honourable Beverley McLachlin, gave a talk in Halifax about people with a mental illness (her term, which I will use throughout) and their interactions with the justice system, both civil and criminal. For me, it was an interesting, although slightly, frustrating talk (I dislike the way people with mental illness and people who work in the medical or legal profession were treated as two different and distinct groups, with no overlap).

Like most people who follow disability-related news, I’m well aware of both the high levels of mentally ill people incarcerated in Canada and the frightening number of fatalities when someone with a mental illness interacts with the police. [Read More on this on FWD: Record of the Dead. I love policy. Publicity and the Taser. What is Justice.]

As the Chief Justice herself said, it’s an issue that many people want to sweep under the rug. I often see people wanting to pretend that each incident of a person being killed by the police as an individual issue, rather than a disturbing trend. As an activist, it’s heartening for me to know that the Chief Justice of the Supreme Court of Canada believes this is a systemic problem, and one that we need to fix.

I’m going to divide my discussion of this talk into three parts, just as the Chief Justice herself did. Part one is an introduction to the situation in Canada, as well as touching on issues that can occur when people with mental illnesses interact with the criminal justice system. Part two will focus on civil cases, specifically on people who have a diagnosed mental health condition refusing treatment and the response of the court. (I’m sure that will be fun. /sarcasm) Part three will talk about people with mental health conditions being victims of the justice system.

The Chief Justice began her talk with a brief history of the treatment and stigma around mental illness, focusing on how people used to believe that mental illness was a sin, or a sign of possession, or the fault of the mentally ill person. She then went on to detail how scientific advances have combated these stereotypes. (I wanted to move the country where mentally ill people are not blamed for having a mental health condition or considered weak or told to shut up, but I think we come at this from different perspectives.) She also touched briefly on the history of forced institutionalization in Canada, first in sanitariums outside of the city, and then in hospitals within it. She ended this section by discussing the de-institutionalization movement, which often left people with a mental illness with no skills to find a home or a job, and no ties to the community having been in the institutional setting for years. To quote my notes, which are not verbatim:

“The streets are dominated by many people with mental illness. We must now interact with them in society. Where once the legal solution was simple, now it is complex and expensive. Decent housing, drugs, hospitals, psychiatrists cost money. With so many competing demands on the health care, the claims of the mentally ill hover on the margins.”

One thing the Chief Justice highlighted in this section was the lack of hospital beds for people needing a psychiatric evaluation. When I worked in a mental health-related job, I know there were dedicated beds at the hospital for people brought in for psychiatric evaluation, but because beds were at a premium, they were sometimes given to other types of patients. This, in turn, both increases tensions between people who work within the mental health system and people who work primarily with physical illness (as though these are entirely separate things), as well as making it more difficult for police officers to bring people who may be living with a mental illness into the hospital for evaluation. Many of us can agree that a prison cell isn’t a place for someone who is having a mental health-related crisis, but sometimes there’s no place else to go.

The Chief Justice then introduced her discussion of people with mental illness and the criminal justice system by bringing up the Charter challenges to the system that existed pre-1982.

As a brief history lesson: Canada instituted the Charter of Rights and Freedoms in 1982, which guaranteed rights such as the right to be free from discrimination based on mental or physical disability. Now cases can be brought before the Supreme Court as “Charter Challenges” – the case is about whether or not the law itself is illegal by violating the Charter. In terms of people with mental illness in Canada, if they were found to be “not guilty by reason of insanity”, they were held under a Lieutenant-Governor’s Warrant, taken to an institution, and held there without any trial, without a judge, and with the case only being reviewed periodically. It was, in essence, incarceration without trial or any possibility of parole. This was Challenged as being unconstitutional, and the system had to change.

Again, to quote my not verbatim notes:

Parliament got to work and they drafted a series of provisions, known as Part 20 of the Criminal Code. These provisions are very advanced. They have set up an alternate route whereby mentally ill people who are charged with crimes are, after a hearing before a judge, declared Not Criminally Responsible. If they are declared NCR, then they do not go through the ordinary court system. They go before a NCR Board (this is Provincial). The board has an obligation to determine what is the least invasive way of looking after their illness. May give them an absolute discharge if there is no danger to the public and they can be released into society. They can give a conditional discharge, which is a discharge under medical supervision, and this can vary from part-time hospitalization to being in the community. Or they can, if the Board feels the danger to the community is such, require the person to remain in custody in a hospital.

There are reviews every year. The board deals with their cases and gets some familiarity.

This system is working very well. It works humanely. It works in a fair manner where mentally ill people can come before boards in an informal way. It is also providing adequate protection to the public. This is on the whole a positive development.

We still have problems: lack of hospital facilities. Before this system can start to operate a judge has to say that the person is NCR. Requires psychiatric assessment in a hospital. Sometimes trouble getting them into the hospital. A number of judges have spoken out about this. Reported in newspapers. Also problems in finding facilities for young people. 13 year old girl ended up having charges stayed because the authorities were unable to provide a proper youth setting for her evaluation and care. She was sent to prison instead, which was totally inappropriate. I mention these cases to show there are strains in the system.

I’ve had a bit of interaction with the Mental Health Courts from when I worked in the system. Like many things involving people with a mental illnesses, these courts are underfunded and very busy. There are very strict rules about who qualifies as “mentally ill enough” to be seen in this court, which means that people who should be here are instead sent back to the regular criminal courts. Everyone involved looks at this and knows it’s a problem, but the money isn’t there to solve it.

Recommended Reading for Wednesday, October 20, 2010

Good Day, all. It’s been a stressful week at Chez Anna (I’m putting this together at 5 a.m. my time) so forgive me for oversights, please.

Kali at Brilliant Mind, Broken Body: I am not your metaphor

This is something that has bothered me for a long time, and actually led to one of the very few spats between the boyfriend and I (quickly mended, once we both cooled off a bit). I really hate the use of disability-based metaphors. Hate them, hate them, hate them. I believe that they’re part of what makes disability such a fearful, distorted, tragic cloud to people who are able-bodied.

It’s all well and good to say they’re bad, but I think it makes more sense if I actually go through some of the more common disability metaphors so you can see what I mean

DeafMom:Embracing My Deaf Self

My life took an interesting turn at that point. Once the grief subsided and I dried the tears, I entered a new world filled with deaf and hard of hearing people. It wasn’t easy– because I had spent the previous 19 years of my life hiding my hearing aid and feeling quite uncomfortable with anything that reminded me that I was “different.” It took awhile for me to learn American Sign Language and get to the point that I embraced a deaf identity. Once I did, there was an amazing transformation in my life: Yes, I am deaf and gosh-darn-it, that’s perfectly ok.

shiva at Biodiverse Resistance: When Will We Be Paid For The Work We’ve Done?

There are several horrible things here. First, the uncritical use of the term “trainable”, dating from the workhouse-era classification of intellectually impaired people into those who could be “trained” to do “useful” work (often with “training” methods that basically amounted to torture) and those who could not (particularly disturbing coming from a “special education” teacher!). Second, the assumption that her “functioning level” (a heavily loaded and problematic term in itself) will never change throughout her lifetime, and that, despite Brown demonstrably being in reality an adult, her “functioning level” is that of a child, meaning that Masaki buys into the “eternal child” stereotype of learning-disabled people – historically and still used to deny them adult sexualities, adult roles within families, and all the basic rights, freedoms and responsibilities that anyone else is assumed to gain automatically on reaching chronological adulthood – which is perhaps even more disturbing as an attitude held by a teacher whose pupils she considers herself “mentor and so much more” to. Thirdly, the glib “wouldn’t it be nice” comment, which is more patronising “inspirational” crap, making disabled people into ciphers of innocence rather than real, flawed and complex people.

MarfMom: A Call for Posts

A Call for Birth Stories From Women With Disabilities

Whether you knew about your diagnosis ahead of time or not, whether you had a vaginal birth or a c-section, I want to hear your story. Positive birth stories are awesome, but if yours wasn’t what you hoped please feel free to submit it too because I want to keep this blog real and the reality of having a disability is that sometimes our deliveries are complicated. I’m going to leave the term disability open-ended, but I’m basically looking for high-risk pregnancies (or what would have been if you’d known your diagnosis). You don’t need to have a connective tissue disorder.

Anne at Where’s the Benefit: The Damaging Effect of how People Perceive disability benefits

If you are one of society’s more vulnerable members, you will have to fight for everything and wade through reams and reams of red tape. That is the experience that many of us have. And people who become eligible for disability benefits and try to claim them are often completely shocked. Some do not have the energy, emotional strength and/or intellectual capacity to go through all of the form-filling and bureaucracy involved in applying and apppealing.

But so long as the myth persists that it’s simple and easy to apply for disability benefits, people will believe that anyone who says it’s not is making a fuss over nothing, or sticking up for so-called scroungers – and when people become eligible for these benefits and try to apply, they will continue to be absolutely gobsmacked when they find out how difficult it is.

In The News

Canada: The National Post: Bygone Braille. “Advocates blame funding shortages, not enough qualified teachers, and decisions by administrators to deny Braille instruction to children with low vision because of an emphasis on encouraging these students to read print. Educators say this assessment couldn’t be further from the truth and argue that today’s diagnostic tools have honed the art of identifying those who truly require Braille instruction and those who don’t.”

Australia: Australia Misses the Plane on Accessible Tourism. “Based on general population statistics of age acquired disabilities the total expenditure of this group in the travel sector is likely to exceed 22% in ten years time. Not only is this relevant to Australia’s domestic tourism market but the majority of Australia’s inbound tourism is sourced from countries with similar age demographics.”

UK Learning Disability Coalition protests in Birmingham at Government cuts. “The campaigners from Birmingham, many of whom use social care support, held up “Cuts Incident” boards displaying the frontline services which they fear will be affected by the Government’s Budget and Comprehensive Spending Review and subsequent cuts that will be made by local councils.”

Pondering Preludes

Spoilers for Farscape: the third part of “Liars, Guns and Money” in Season 2 and, in Season 3, “Season of Death” and something you really really really won’t want spoiled for the second part of “Self-Inflicted Wounds”.

I like to keep DVD boxsets on hand for my study breaks, and my latest show is a 1990s/2000s Australian/US television show called Farscape. It’s a really fun show about an astronaut who gets sucked through a wormhole and is forced to align himself with a bunch of aliens in some far-off part of the universe – watch it, do! – but that’s not what I want to talk about.

Towards the end of the second season, a minor recurring character called Rorf loses an eye to an enemy, to put it in the least graphic terms possible. I started to get a sense of premonition, although I wasn’t sure what it was about just yet. Rorf is killed in battle towards the end of the episode. At the start of the third season, Zhaan, one of the main characters, saves the life of Aeryn, another key character, at the cost of her own health. She’s dying, she tells her fellow crew members for a number of episodes. No, they say, we’re going to get you to a planet, not too far away, where you can be healed. No, she says, I’m going to die. And, good as her word, she ends up sacrificing her life for the good of the crew before they can get her to a planet where she can be healed.

What I got out of these two instances is the idea that injury is a symbolic prelude to death. That, if you’re altered from what you have been, life isn’t worth living anymore, that you’re only good for giving up everything for those who are “whole”. That’s a pretty distressing message to be putting out there.

Have you found similar representations of disability or injury in popular culture?

Guest Post: Matchstick Girl

Amy Gravino is a certified college coach for individuals with Asperger’s Syndrome, and is diagnosed as having AS herself. She is currently attending graduate school at Caldwell College in Caldwell, NJ, where she is working to obtain her Masters degree in Applied Behavior Analysis. Amy is also authoring the book, “The Naughty Autie,” which chronicles her experiences with dating, relationships, and sexuality as a woman on the autism spectrum. (For more information, please visit www.amygravino.com.)

Editor’s Content Note: This post discusses being locked in a closet, and may trigger a claustrophobic reaction.

It all starts with a doorknob.

The palm of my hand wraps around cool metal. Smooth and solid against my skin, gaining me entrance to my place of peace. I can hear the other children’s voices somewhere distant, far away on the Big Toy. They play outside, running over hot blacktop, skin freckling in the sun.  But I am in here, in the dark.

I move into the closet slowly, acutely aware of my Velcroed sneakers touching the tiled floor, one step at a time.  The shoes are too tight, and my feet are throbbing and cramped. They’re trapped, along with the rest of me.  My muscles are tense and twisted in preparation for the onslaught of adolescence soon to come.  I’m in the middle of the closet now, standing right below the light bulb. Without hesitation, I sink to the floor and arrange myself in a cross-legged position.  I have no concept or inkling that any of what I am doing is not normal.  I don’t even think that anyone notices me retreating in here day after day. I’m a matchstick girl—legs spindly and awkward, all too sensitive, waiting to be set alight by the outside world.

I try to breathe, for what seems like the first time all day. Tiny hisses of air pass through my clenched teeth, which are aching behind omnipresent metal braces. I can feel the blood rushing through my gums to the enamel, and back again.  So much awareness, and yet it is this same awareness that fails me when I try to interact with my peers.

Thoughts of past and present social failings dart through my mind, each delivering a momentary but painful sting: a student’s science project in Mrs. St. Pierre’s classroom two years ago.  A flood of red, followed by a loud rumble and a hiss from a homemade volcano sends me running out of the room screaming.  Gym class two days earlier: a silent mantra—I will hit the ball this time, I will hit the ball this time. And I did—with my face, courtesy of an intentionally too-hard lob from the other side of the net.  Home Economics, one year ago. Untrained hands move clumsily, twitching from the sewing machine’s vibrations.  I’m bent too far over, and it’s only seconds later when a mousey brown strip of my Rapunzel-esque hair catches beneath the needle.  My classmates stand nearby, taking in the spectacle, making no move to help me.  While I shriek, they laugh.

The emotions that poured out of me in each of these situations come back to me now, as powerful as they were when I first felt them.  I become so lost in my anything-but-pleasant reverie that I do not notice the closet door slowly shutting behind me.  The sudden click of the lock jolts me upright.

“Haha, you’re locked in the closet!” one voice jeers.

“You’re not allowed to come out!” another joins in.

Two girls. Ella Ringway and Kelly Rockpoint. I recognize them immediately. Why are they doing this? What did I do wrong? I grab the doorknob and it turns, but the door won’t open. A swell of panic rises in my chest.

“Please, let me out! Please!” I cry.  But the taunting continues.  With all the might my miniscule form can muster, I push against the door, but their backs are up against it on the other side, and I feel the weight of their bodies countering my efforts.

“Come on, you guys! Let me out of here!” I again implore. But they ignore me, and I can hear them laughing at my expense. My safe haven is now a prison, and I cannot escape.

Eventually, Mrs. Plotz, the math teacher whose closet I am trapped in, arrives, and sets me free, shooing Ella and Kelly to their desks so that class can begin. I emerge from the closet as slowly as I went into it, nerves destroyed and heart scarred from my ordeal. My sadness and anger are barely concealed as I find myself forced to complete long-division problems with my former captors.

You call this justice? Does the Geneva Convention mean nothing to you people? I wonder while fuming silently.

But this was middle school, and there was no justice to be found. Not for anyone, but especially not for me. This continued all through high school, unrelenting, unending. I was, I thought, trapped in an invisible closet, one of my own making, unable to connect to anyone or anything. It is only years later that I now see how they were the ones truly in the dark.

This precise memory—of the closet, of being locked in by my peers—has not passed through the fore of my mind in a long time.  It had no reason to until last year, when I received a message on Myspace from Ella herself. I was surprised more than anything else, and did not know what to expect when I started to read it.  What could she possibly have to say to me? We had neither seen nor spoken to each other since graduation, and I couldn’t imagine why she would have a need to write to me.  It was only after I’d read the entire message that I realized she had apologized for how she’d treated me. She said she wished she’d known more about Asperger’s syndrome at the time, and that maybe if she had, she would have acted differently.  But the would-haves and could-haves meant nothing to me.  What did mean something was that, out of all the people who’d tormented me back then, Ella was the only one who had the courage to come out and apologize for it.

Sometimes I can still feel the closet around me.  The odor of mildew and old math books collecting dust is as strong in my mind now as it was then, but other smells now provoke other memories. They are locked up tight, while I sit in front of the door to keep them from getting out.

Interested in submitting a guest post to FWD? Read our call for guest posts here for more information!

Institutional Research Boards, Syphilis, and You!

The United States government recently disclosed that in the 1940s, American public health doctors deliberately infected almost 700 Guatemalans, including some people institutionalized for mental illness, with syphilis. Although those infected were given antibiotics, it’s impossible to say how many died or experienced long term health consequences from the infection. The research was performed by the United States Public Health Service, which means it took place entirely under government control and oversight and used government funding from the National Institute of Health.

The worst part (well, there are lots of worst parts) is that nobody seems to have been covering this up. The main doctor involved was also involved with the Tuskegee experiments on black men and a professor researching Tuskegee uncovered details of the Guatemalan experiments in the doctor’s personal papers. The researcher presented the information at a conference in January, but the information didn’t go anywhere. It was only after she wrote it up for publication and sent a draft to a former director of the Centers for Disease Control that the government realized – or noticed – what had happened.

All of this strongly suggests that there should be some kind of rules and regulations – a policy – to prevent the government from conducting that kind of health research. To be required to treat human beings as humans, rather than non-sentient objects to be literally experimented on. To make sure that if something like this were ever to happen again, someone would have to take official responsibility and do whatever possible to make restitution. And there are. After World War II, in response to the terrible human experimentation carried out by the Nazis, the Counsel for War Crimes developed the Nuremberg Code, which is the basis of the United States’ current policy. The ethical guidelines from the Code were later made into formal law in the United States – in direct response to atrocities like Tuskegee – so there are currently federal regulations (Title 45, Part 46, if you’re interested) governing research on any human subjects. The policy has six major principles:

  • the proposed research design is scientifically sound & will not unnecessarily expose subjects to risk;
  • risks to subjects are reasonable in relation to anticipated benefits to subjects and the importance of knowledge that may reasonably be expected to result;
  • subject selection is equitable;
  • additional safeguards are required for vulnerable subjects (pregnant women, children, and prisoners);
  • informed consent is obtained from research subjects; and
  • risks to subjects are minimized.

All proposed experiments that involve experimenting on humans must be written up and submitted to the National Institute of Health, where they’re reviewed by the Human Research Subjects Advisory Committee. Most universities have their own internal board to review research involving human subjects and are accountable to the NIH for their actions.

So. Is that policy good enough to prevent another horror like this from occurring? Well, if the Guatemalan experiments had been written up and submitted for review, they certainly would not have passed. The research would unnecessarily expose subjects to risk that is far out of proportion to any potential benefit to them (none that I can see). There was significant research benefit – we learned a lot about how penicillin acts on the syphilis infection and how syphilis tests work, things we had not been able to learn from previous experiments on non-human subjects. Subject selection certainly was not equitable – the study picked extremely vulnerable people, including prisoners and PWDs, who did not receive any additional safeguards. Risk to people was not at all minimized. And most horrifically, no informed consent was obtained, because the people infected did not get any information and definitely did not consent.

But it’s easy to imagine the possibility that some horrible things could still happen. Take the prohibition on “unnecessarily expos[ing] subjects to risk.” What would the NIH consider necessary risk? Or a bigger question, what do they consider to be a risk? If they determine some risk exists, is there more incentive for them to overlook some risk when the potential knowledge benefits of the research are really big? There are more detailed regulations that discuss some of these issues, but it’s hard to craft statements that can apply to every potential situation that could come up.

Beyond that, there’s potential problems in implementation. You can imagine a group of people who believed that the quest for larger human knowledge and saving a whole lot of lives was more important than any single individual – they would make different decisions than a group of people who believed that any individual is more important than saving lives. There are complex rules governing the composition of review boards to ensure diversity, but it’s hard to ensure a good balance – and it’s also complicated by the number of different review boards that exist.

Finally – there’s the question of enforcement. The NIH can’t follow up on every single scientist and experiment to make sure they’re carried out exactly as described in the application. What is there to prevent a scientist from falsifying the writeup of their research and carrying out unauthorized experiments? This part is mainly carried out by the scientific community itself, which requires peer review in order to publish the  results of research. This method of enforcement saves the government money but might be inexact.

Despite all these potential problems, we’ve created a complicated policy like this instead of banning all experiments that involve humans for clear reasons. I’ve been a subject in a whole host of experiments, including one measuring the effect of the personality of lab personnel in desensitization experiments. I contributed to the study and now have a fondness for, rather than a terror of, tarantulas.

So have we created the right policy? The best policy? A good policy? I don’t know. Our review of the policy gave us only a little bit of answer and a whole lot of questions. It turns out that’s often how policy works, and the kinds of problems with this policy are the same kinds of problems we see in a lot of policies. There’s the problem of specificity – how do you write a policy that says exactly what you want? There’s the problem of implementation – how do you get people to do what the policy says? And then there’s the problem of enforcement – how do you make sure that people are really following the policy? It’s easy to make sure that the rules apply to the most extreme examples – the Guatemalas, and Tuskegees, the Milgrams and the Stanford Prison Experiments – but it’s harder to address the cases nearer the line between ok and not ok.

Further reading and reference:

Various National Policies on Research on Human Subjects

By 19 October, 2010.    news, policy