Category Archives: autonomy

Wild Women With Disabilities Speak Out

The video is subtitled.

Transcription:

Title Image: Reflections from MIUSA’s WILD2010
Wild Women with Disabilities Speak Out
Global Fund for Women

[Drumming]
Narrator: In August, I had the privilege of representing the Global Fund for Women at the Women’s Institute on Leadership and Development, or WILD, a three-week program hosted by Mobility International USA. Women disability rights activists came from 34 countries to a serene natural setting in Eugene, Oregon. They came to share with each other their wisdom and strategies for how to win recognition, inclusion and rights for the disability community. During the final week, WILD alumni and representatives from international organisations particpated by networking, mentoring, and discussing gender, disability and development.

From these incredible women, I learned how it feels to be excluded from the mainstream women’s movement in India, how it feesl to be marginalized in a male-led disability rights movement in Botswana, and the importance of bringing women with different disabilities together for a stronger and more unified voice in every country.

I was so proud that the Global Fund for Women had provided seed grants to many of these grassroots leaders who had experienced other funders telling them “We don’t do disability.” I was overjoyed to be able to say “Yes, we recognize the importance of investing in women with disabilities.”

Some of our grantees shared with me what receiving a Global Fund Grant meant to them.

Jasmina: I’m Jasmina Risteska from Macedonia, and I’m working for an organisation, Mobility Challenge. Our focus is women with disabilites and their inclusion in every aspect of social life. The great work the Global Fund for women is doing is that they support us in the most difficult moment for us, that is, our beginning, and thank you very much Global Fund for your support.
[La, la, la, la, la]

Ekaete: Hi, my name is Ekaete Umoh. I’m the Executive Director of Family-Centered Initiatives for Challenged Persons, an NGO working with women and girls with disabilities based in Nigera and a Grantee of Global Fund for Women. I really want to thank Global Fund for Women for giving us the foundation which we are standing on today. In 2004 we got about $6,000 from Global Fund for Women to support our organisation and since then things have really changed. The money came when we needed it the most and it was so strengthening, it gave us the energy to move on. With that money we’ve been able to do a lot for our organisation, and the issues of women with disabilities in Nigeria has been brought to the front burner.

[La, la, la, la, la]

Karine: I am Karine from Armenia. I am the President of Agate Center for Women with Special Needs NGO. Our NGO was founded thanks to the grant provided by Global Fund for Women in 2007. I want to thank them for their support and trust. They were the first who trusted us.

[La, la, la, la, la]

Alicia: My name is Alicia Contreras and I am disability activist. Thanks to the Global Fund I got a grant and I started a women’s program in Mexico. I started the first independent living center for women with disabilities, and without the Global Fund I would not be able to do it. My advice for those who think you can’t do it, do it, try it, start it.

Narrator: After the program, women returned home energized to overcome challenges and raise the visibility of women with disabilities in their communities. I, too, left eager to be a stronger ally to the global women’s disability rights movement. These loud, proud and passionate women have deeply inspired me and I will hold their vision, songs, and laughter with me forever.

We want to be a part of your community.

Recommended Reading for 12 November, 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?

Sydney Morning Herald: Why I’m not in the queue for the disabled loo by Liz Ellis.

There was a debate over policy and procedure but ultimately it came down to human conscience, something that I am incredibly appreciative of. But should I really have to rely on human conscience overriding policy and procedure?

The Globe and Mail: The sound (and sight and feel) of music for the deaf by Jill Mahoney.

Frank Russo helps make music for the deaf.

Working with a team of researchers, the Ryerson psychology professor invented a chair that allows deaf people to feel music through vibrations. He also works with both deaf and hearing musicians to compose music that focuses on vibrations and vision rather than sound.

The Los Angeles Times: Mentally ill prisoners get a second chance by Lee Romney.

Mental health courts are operating in 29 California counties, helping offenders and reducing crime in their communities.

As I mentioned a few days ago, I’m writing for the NSW Don’t DIS My ABILITY campaign at present. Here, have some tacky self-promotion!

…and I’m feeling good

This will be a bit of a shock if you’re invested in disabled bodies as broken and horrible and unlovable, so brace yourself.

I love mine.

Who Gets to Speak?

I’ve been thinking about this man ever since, and the way he read me as abled. But mostly I’ve been thinking about assumptions about the kinds of people who do disability advocacy. Namely, there’s a strong perception amongst the abled public that people with disabilities are unable to advocate for ourselves. Supposedly, our abled family and friends do it all for us.

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

The Challenge of Mental Illness in the Justice System Part 3: Victims

This is the third in a three-part post about a talk given by the Chief Justice of the Supreme Court of Canada, The Right Honourable Beverley McLachlin, about the interactions between people who are mentally ill (her term) and the justice system of Canada. Part 1 briefly discussed the history of the treatment of people with mental illness in Canada, and then described the current situation with regards to the criminal court system. Part 2 discussed the interactions between people with a mental illness and the civil courts. Part 3 will discuss the mentally ill as victims of the justice system.

This post will discuss violence against people with disabilities.

All quotes are from my notes and are not verbatim.

Many Canadians will be familiar with several stories of people diagnosed with a mental health condition being killed by police officers. Byron DeBassige, 28, was shot and killed by police officers in February 2008 (Toronto). Howard Hyde, 45, was tasered and killed by police officers in November 2007 (Halifax). Ashley Smith, 19, committed suicide in jail while prison guards watched in October 2007 (Kitchener). Reyal Jensen Jardine-Douglas, 25, was shot and killed by police officers in August 2010 (Toronto). While Robert Dziekanski does not appear to have had a mental illness, his “irrational” behaviour after having been detained in the airport for 10 hours is the reason police officers gave for tasering him multiple times and leaving him to die in October 2007 (Vancouver).

The Chief Justice specifically focused on the case of Byron DeBassige, reading from the Toronto Star article I linked above. She went on to state that she believes that the police wouldn’t have shot DeBassige over two lemons and a knife had they known he was ill. In light of the other cases I’ve linked to, I don’t agree with her – in several of those cases the police were firmly and repeatedly told the person they killed was mentally ill. I don’t believe police officers as a whole have risen above the ableist prejudices that lead to psychophobia (fear of people with mental health conditions), simply because there’s been no real attempt in Canada to combat it.[1. There is, however, an attempt to point out that “mental illness costs Canadians $51 Billion a year“. I don’t think we battle prejudice against mental health conditions by talking about how much it costs, especially since I think it would be more accurate to say “discrimination and stigma related to mental health conditions costs the economy $51 Billion a year”, but what do I know? I’m just a crazy lady.]

The Chief Justice went on to discuss how prejudice and fear can affect people with a mental illness: “I’d like to shift the focus to millions of mentally ill people who do not break the criminal law, who remain untreated or inadequately treated, and at liberty. Too often they are simply victims: Victims of discrimination, ignorance, societal inefficiency, and sometimes of violence that too often ends with their death.”

As a woman with a diagnosed mental health condition, I’m twice as likely as my non-disabled counterparts to be the victim of a violent crime, including rape. [Source is PDF] I’m also significantly less likely to be violent than my counterparts. And yet, even on FWD (in comments that are unapproved), it’s not rare for people to equate my diagnosis with abuse. It’s not uncommon for me to be sitting in a classroom of people who know that I campaign for disability rights and have talked a lot about the prejudices that face people with mental health conditions and have my classmates talk about how “crazy” people are violent. After learning I was going to this talk, one of my classmates told me that, should she ever murder someone, she’d claim temporary insanity and just spend a few months in care and then be released. All I could think of was Ashley Smith, who threw crab apples at the postman and died in jail.

The stark truth is too often we discriminate against the ill. We pass them lying on the street but ignore pleas for housing, reluctant to give them jobs even when they’ve struggled valiantly to overcome their illness. We marganilise them.

We need to know more if we’re going to avoid the specter of mentally ill as victims. Related to this is the lack of social coordination on behalf of the mentally ill. All who play a role in an ill person’s life must find ways to communicate and talk to each other. They fall through the cracks. There must be better communication between agencies if we are to prevent more mentally ill people from becoming victims.

This last quote is, in sum, why I felt a lot of frustration with this talk. Throughout, the Chief Justice talked about agencies, she talked about police officers, parole officers, and judges, she talked about what people can do. At no point did she quote an actual person with a mental illness. At no point did she suggest that people talk to those of us who have a mental health condition, and find out what we want and need. At no point did she talk about attempts by the justice system to include people with mental health conditions on tribunals or in the discussions about how the justice system can do better on this issue. Nothing about us without us really shouldn’t be a daring concept, but it seems it is.

Despite all of my complaining, I actually did enjoy this talk. It’s not very often that people admit that prejudice and fear play a strong part in the way people with mental illnesses are treated, by society in general and the justice system in particular. As a Canadian, it makes me happy that the Chief Justice of the Supreme Court is speaking about this, because her authority lends weight to what she’s speaking of, and because I know the Supreme Court is aware of the issues that she’s raising. I also appreciate that she takes the time to speak on this issue often. I was recently emailed the text of a similar talk she gave in 2005. Making law students and lawyers (as well as the general public) aware of these issues may help prevent future cases like Ashley Smith’s suicide.

I would obviously like that more awareness of these issues was addressed in a helpful and thoughtful manner in the newspapers, in classrooms, and on the internet. Chief Justice McLachlin is doing good work, and I’m very glad of the opportunity presented by Dalhousie University to see her talk in person.

Dal News wrote about this presentation as well.

“The Challenge of Mental Illness in the Justice System” – Part 2: Civil Court

This is the second in a three-part post about a talk given by the Chief Justice of the Supreme Court of Canada, The Right Honourable Beverley McLachlin, about the interactions between people who are mentally ill (her term) and the justice system of Canada. Part 1 briefly discussed the history of the treatment of people with mental illness in Canada, and then described the current situation with regards to the criminal court system. This part will discuss the interactions between people with a mental illness and the civil courts. (Everything in quotes is from my notes, which are not verbatim.)

One of the anecdotes the Chief Justice opened her talk with was about an incident that occurred when she was articling. She discussed receiving a phone call from a woman who had been institutionalized, and told her that she only had two minutes to be on the phone. “I’ve been locked up, and I need to get out,” she whispered. The Chief Justice related how this woman had been forcedly institutionalized by her very respectable husband, who decided she was “overly emotionally, somewhat hysterical, had convinced the doctor to sign the papers. The authorities had come and she was taken to the mental institution.”

I got the impression – perhaps wrongly – that the Chief Justice wanted us to see this woman as someone who had been wrongfully institutionalized because she wasn’t actually mentally ill. She told the anecdote as part of the history of institutionalization, having just described it as a way “to get rid of someone you didn’t want, like a wife giving you trouble.” [s.e. smith wrote about this a bit when reviewing Fingersmith at this ain’t living.] This is a pretty common narrative when people discuss fear of institutionalization, and you’ll often see this story play out in pop culture. It gives the impression that forced institutionalization isn’t wrong, except when it’s someone who’s totally sane. The mentally ill, on the other hand, can be treated without care.

The focus of this section of her talk was on the “difficult ethical and legal problems” arising in the civil court. “On the one hand lies liberty of the individual, and the right of the individual to make decisions. On the other lies the tragic reality that the mentally ill cannot make rational decisions. Surely, their loved ones argue, we should be able to impose treatment to the point where they can have the capacity to make rational decisions about his or her treatment.”

Again, the Chief Justice focused on the change in how people with mental illness can legally be treated as a result of the Charter. She touched briefly on the history of forced hospitalisation, and how this had originally been forced treatment as well. Now, apparently, people are only forced into hospitalisation if they’re considered a danger to themselves or others. (From what I’ve gathered talking to people in Canada who have been hospitalised as a result of mental illness, there’s a lot of pressure to agree. This can vary from loved ones saying “We just want what’s best for you!” and the attendant guilt-related issues, to “if you don’t agree we’ll call the police and you can go to the asylum instead”.)

In describing “the issue being whether the person possess sufficient cognitive ability to make rational treatment decisions about his or her health”, the Chief Justice focused on the particulars of one case, referred to as the Starson Case. [There’s a brief overview of it on Wikipedia, and here are some follow-up news articles and discussion.]

Again, according to my notes:

At the time of the action Professor Starson was detained in a psychiatric hospital as a result of a finding of Not Criminally Responsible. The physicians believed he needed medication, but Professor Starson refused. His physicians found that he was not capable of making a decision with respect to his medical treatment.

He applied to the Ontario Capacity and Consent board to review that decision. The Board agreed with the doctors. He was in almost total denial of the illness (Wikipedia tells me he was diagnosed with Bipolar Disorder) so could not relate information to his disorder.

The matter was appealed to the courts and the lower courts in Ontario ruled he was capable of making decisions. This case then went to Supreme Court and the issue was the interpretation of the test for capacity. The majority ruled that Professor Starson had the capacity to make a choice and accordingly the Board’s order was overturned.

The story doesn’t end there. After the Supreme Court decision in 2003, his condition deteriorated. In 2005, his treating physicians found him incapable of managing his care. With his mother providing substitute consent, doctor’s began medicating. In 2007 he was discharged to outpatient status. In 2009, he was still contesting the decision to be forced into treatment.

The Chief Justice then went on to describe the debate about the treatment of people who are mentally ill as being between those that argue that the law should never permit mandatory treatment, and those who argue that mandatory treatment should be expanded to cover more instances than it does. In Canada, she said, “Liberty can be curtailed only exceptionally – when there is genuine risk of harm to his or herself or others, or when a person is cleary incapable of making decisions necessary for medical care.”

One of things I noted in this section of her talk was the very distancing language the Chief Justice used throughout. While at one point she did describe how we can feel sympathy for Professor Starson’s fight to determine his own treatment versus that of his mother’s fight to get him the treatment she felt he needed, most of the time the Chief Justice spoke as though no one in the audience would ever be touched by these decisions. As I said in the first part of this, I’m uncomfortable with a circle drawn around people with a mental health condition, and another around people who work in the legal or medical profession, with no overlap. The whole thing read a bit too much like “you can tell who’s crazy by looking at them, so I know none of you are.”

There is one more part to this discussion, which focuses on the mentally ill as victims of the justice system.

“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.

ADAPT Protests partially lock-down White House! Media Yawns, Changes Subject

I spent most of my weekend pretty much glued to Twitter following ADAPT’s latest action in Washington, DC and wondering where the media was, especially after a huge group of wheelchair users blockaded one of the White House gates and 16 people were arrested. I actually thought that the White House security arresting a group of people with disabilities would surely be the sort of thing that the media would pick up on.

Foolish me! Just like with the Arnieville protests that s.e. wrote about last week, the media is basically ignoring this four-day-long protest in Washington in favour of more important things. Despite repeated hunts by me and several other people, the only mention of the protest, “partial White House lockdown”, arrests, and march is this CNN report, which only quotes White House staff and the ADAPT webpage. Apparently CNN couldn’t even find someone from ADAPT to quote directly. (Also, the photos of the event that ADAPT have posted make it clear that CNN’s report is factually inaccurate.)

[If you would like to read NationalADAPT’s tweets, a good place to start is their September 18th tweet, and just keep going from there. Their timeline includes a variety of photos taken of the event, and also will point you towards other tweeters that were there.]

ADAPT has been protesting at the White House at least once a year (sometimes twice a year) since 1997, and has been holding protests in other cities across the US for 25 years. The focus of their protests for the last 11 years has been the Olmstead Decision and the Community Choice Act.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.

On Sunday, ADAPT held a funeral, complete with casket, to both mourn and bring attention to the number of people with disabilities who have died in nursing homes around the country while fighting to get out of them. Monday involved marching directly on the White House. While CNN reports that 9 people handcuffed themselves to the White House gates, the ADAPT photos and Reports make it clear that far more than 9 people were involved in this action.

The Park Police had closed the sidewalk and street in front of the White House around 10 in the morning as ADAPT approached. When the police used an SUV to block ADAPT and the sidewalk, the bulk of ADAPT charged into the intersection of 15th and G Streets stopping traffic completely. The police had believed they had successfully stopped the line of activists when suddenly all the traffic was stopped and the intersection was packed with activists.

“The people they thought were meek or expendable,” said Jennifer McPhail about the police force, “were the people who had taken their power.”

While ADAPT’s actions continue today across Washington, DC, members who are required to attend court this morning after being arrested have been illegally challenged at the court to produce documentation for their service animals, and need to bring attention to ADA violations to the very people one would expect to be enforcing the ADA.

When a local Washington paper was challenged on their decision not to report anything about the ADAPT protests, their response was first that they don’t cover national protests and then, when it was pointed out this was also a local protest, that it was a matter of debate, and there were protests every day in DC. Other media sources haven’t responded to questions about their lack of coverage.

I do understand this, to a point. Certainly I’ve attended protests that have received very little media coverage, and most of that in either local papers or in grass roots news organizations. However, at what point do we start to seriously question why multi-day – or, in the case of Arnieville, multi-week – protests by people with disabilities are getting ignored? The ADAPT actions have decades of history, and touch on issues that are hot-button topics in the US right now, such as health care, funding for social programs, and the standard of living.

And yet, still, despite everything: we protest, and are ignored.

Body Image & Disability: An Entry Into The Conversation

A long time ago, I said this:

People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.

Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.

But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.

These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.[1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.]

At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.

I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.

As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!

I think there’s so much here to talk about. Please, tell me your thoughts.

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Reproductive Justice is for Everyone, Even People You Don’t Like

There’s a sign on the wall of a local clinic which says, according to my paraphrasing memory:

You have the right to decide if you want to have children or not, and to determine their number, timing, and spacing.

The clinic provides reproductive health services to low income members of the community, and plays an important role in ensuring that people have access to everything from safer sex supplies to prenatal care. I’m a big fan of theirs, and I’m a big fan of that sign, which I think embodies the core of reproductive rights and justice. Everyone has the right to make decisions about their own bodies, and one of the core values of the reproductive rights movement should be supporting people in this. Supporting all people, leading all kinds of lives, making all kinds of decisions.

Educating people so they can make more informed choices. Helping people access services to allow them to carry out the choices they are making, whether that’s a decision to get an abortion or to have a child or to get some birth control. Fighting sexual assault and rape as violations to bodily autonomy.

Recognising that while a choice might not be one you would make personally, you can still support someone in making that choice, and you can still enable that person’s ability to make decisions freely. As soon as we start making decisions about the ‘right’ kind of families and the ‘right’ number of children and the ‘right’ number of abortions to have, the concept of reproductive justice starts to fall apart. Who decides these things? Who is the arbiter of whether someone is making the ‘right’ choices?

There’s one group that gets left out of a lot of reproductive justice discussions: People with disabilities.

I’ve seen the decision to have a child with disabilities compared to child abuse, whether we’re talking about a child with a prenatal diagnosis, or a child born to parents with an increased risk of having a child with disabilities. I’ve seen disabled parents treated as though they are committing child abuse simply by being disabled, and being parents. I’ve seen people act like people with disabilities don’t need access to sexual education, because obviously we don’t have sex. I very rarely see any of these actions labeled as what they are, which is ableism.

Denial of reproductive rights to people with disabilities is ableism. Denial of our needs in the reproductive justice discussion is also ableism. Telling us we don’t belong at the table is ableism. We deserve reproductive justice too, and we have needs that are not being addressed by the current reproductive rights movement.

One of the problems with attempting to bring disability into reproductive justice conversations is that people act like the issues we cite are things of the past; they aren’t important, because they don’t happen anymore. People with disabilities are never involuntarily sterilised to prevent them from having children. Children are never taken from disabled parents. People are never shamed for deciding to continue pregnancies when a prenatal diagnosis indicates that the baby will be born with disabilities.

Well, these things are not in the past. They are happening right now.

A few recent cases from here in the United States: A child was taken from blind parents, solely because her parents were blind. It took intervention on the part of the National Federation of the Blind to restore the child to her home. The children of a disabled woman were denied visitation rights on the grounds that it would upset them to see their mother. A quadriplegic woman was told she couldn’t be a good parent. These are just three recent, high profile cases where parents were told they couldn’t care for their children because of their disabilities. Believe me, there’s more where that came from.

As for forcible sterilisation, the Ashley X case attracted a great deal of attention in feminist communities, but it’s far from the only one. Last week, we linked to a story about drugs that suppress sexual desire being used in autism ‘treatment.’ In Central and South America, forcible sterilisation, particularly of Indigenous women, is widespread and the United States has a history of sterilising Indigenous women as well. Tessa Savicki, a Massachusetts mother of nine, is suing after a hospital sterilised her without her consent during an unrelated medical procedure in 2006.

If sterilisation of people with disabilities isn’t a problem anymore, how come someone wrote a bill in 2009 to bar forced sterilisation of people with disabilities?

In a conversation at dinner the other night, I had to physically restrain myself when one of the people at the table attempted to argue that a mutual acquaintance was being ‘irresponsible’ by having a child at her age, ‘because it might be born disabled.’ This is not the only conversation like that I’ve witnessed, on or offline.

For people with disabilities, the reproductive justice discussion is extremely personal. People debate whether we should be allowed to have children, people believe that compromising our bodily autonomy is acceptable for the ‘greater good,’ and people debate whether or not we should have been born. For people who were born with disabilities, hearing people claim that parents having disabled children is akin to child abuse is rather appalling.

The thing about reproductive justice is that it’s not just for the people you like and the people you agree with. It’s not just for young, nondisabled, cisgender women who want to use birth control right now and have access to abortions, with the possibility of having children later. It’s also for parents of large families. It’s also for disabled parents. It’s also for religious parents. It’s also for disabled children. It’s also for people who are not interested in having children. It’s for everyone living in a body, no matter what kind of body it is, no matter what kind of life that person leads. Reproductive justice, true justice, should be all-encompassing.

Excluding people with disabilities from the conversation by either being actively hostile or dismissing our concerns is not reproductive justice.

Working Towards the Neutral Place

Something that I see coming up a lot in discussions about language is the argument that, by asking people to refrain from using words that refer to disability as pejoratives because they reinforce the idea that disability is categorically bad, people engaging in discussions about language are saying that disability is a bed of roses with a unicorn and a platter of cupcakes on the side. This is, as I said in a recent ‘Today in Journalism,’ so not true, and I wanted to pull that discussion out of that post, because it’s important, and it deserves its own post:

The thing about terms like ‘suffers from’ and ‘victim of’ is that if someone self identifies with them, that’s fine. But when they get used as generic terms to refer to people with disabilities in general, it sets a precedent. It tells people that disability is suffering, and that people with disabilities are victims. The reason that we ask people to use neutral language when talking about disability is not because we want to tell other people how to feel about their disabilities, but because we don’t want to tell nondisabled people to think negatively about disability.

This is an important thing, when talking about language. There’s a big difference between identifying with a term and using it, and using a term in general to refer to everyone like you, or, in the case of nondisabled people, using a term you’ve heard someone use as self identification to refer to everyone like that person. If the media presented disability in neutral terms, ‘The locals known Ray Magallan, a man with cerebral palsy who…,’ it allows readers to approach the article with neutrality. But here, from the very start, the subject of the article is a victim.

Asking people to think about the language they use generally is not about telling people that all disabilities are awesome! And terrific! And superfun! Nor is it about telling people how they should feel about their disabilities. What it’s about is working towards the neutral place: The place where disability in general is value neutral, rather than universally good or bad.

Speaking for myself and myself only, there are some things about my disabilities that I like, and that I am glad to have as part of my identity. There are other things about my disabilities that I dislike, and strongly wish would Go Away. And there are a lot of things that just are, that I don’t feel strongly about one way or the other. I don’t like society assigning values to my identities, or deciding that because I feel a particular way about a specific disability, all people who share that disability must feel like I do; I want society to view them neutrally, and that’s one of the reasons that I want to get people thinking about the language they use and how they use it.

The language isn’t the problem. It’s the underlying attitudes that are the problem. Disability is used as a shorthand for ‘bad’ because it is understood to be bad. The goal here is not to try and effect a switch, to disability as ‘good,’ but to get people to view it neutrally, and to allow individual people with disabled identities to shape their own approach to disability. To give people autonomy, and to make nondisabled people understand that when one person says ‘I hate my disabilities’ that person is speaking for ouself, just as the person who says ‘I love my disabilities’ is also speaking for ouself.

It’s also, of course, about getting people to confront the role of ableism in their lives, and to look at how it manifests, but that’s only one facet of conversations about language. People who are stuck on ‘oh, I need to just not use these words’ are missing the much larger discussion, that these words are code for attitudes and beliefs, and that when we talk about these words, we confront those beliefs. By working towards disability as neutral, we are allowing many people with disabilities self determination and autonomy, although not all people with disabilities will necessarily agree that working towards the neutral place is a shared goal, or even something that should happen at all.

Telling a person with disabilities who identifies ou personal experience as difficult, or painful, or unpleasant, or frustrating, or simply bad: ‘how can you say disability is bad!’ is every bit as policing as calling disability in general  a tragedy, because it’s denying someone’s lived experience, and it’s denying something that someone is articulating right in front of you. Someone who hates ou disabilities or who hates aspects of them isn’t ‘betraying the movement’ or ‘wrong,’ and the goal of language discussions isn’t to hound people who feel that way into changing their minds about how they feel about their bodies and brains.

It’s about creating a space for everyone, a space where people can self identify how they like, and feel the way they like, without being judged or shamed not just by society, but also by fellow people with disabilities. There is room for all identities and lines of thought in a world where disability is a neutral identity, and people are allowed to shape it and feel about it the way they want to, rather than being pressured to perform, think, and believe in a particular way for the benefit of others.