The video is subtitled.
Title Image: Reflections from MIUSA’s WILD2010
Wild Women with Disabilities Speak Out
Global Fund for Women
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.]]>
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.]]>
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
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.
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.]]>
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.]]>
This seems like an especially timely matter this week as ADAPT protests in Washington, DC. These protests have gotten essentially no coverage in the media or anywhere else, despite the fact that they deal with some very critical issues. Forcible institutionalisation still happens, it’s a serious problem, and we continue to fight for the right to live in our communities, among our friends and family. Housing discrimination is another major obstacle we encounter; Mia Mingus is documenting her search for accessible housing in Berkeley, widely regarded as a very disability friendly city, on Twitter, and the results are frustrating:
“Well, I mean, it’s not that many stairs. My grandmother’s handicapped and she can do it.”
“Does she really need to be able to get her wheelchair into the bathroom?”
“You’re helping her? Ha. You look like you can barely walk yourself.”
I regularly encounter pushback when it comes to the idea that we belong in our communities, not in institutions. Appealing to basic humanity doesn’t seem to work, and neither does pointing out the economics. It’s cheaper to provide community-based care than it is to warehouse people in institutions. Saying that needless institutionalisation is against the law doesn’t seem to have much of an impact either.
A similar case recently came up in Florida, where Michele Haddad sued for the right to community-based care and won. Haddad was backed by the Department of Justice, which has been cracking down on enforcement of Olmstead and fighting for the rights of people with disabilities in the United States to live in our own communities. When we talk about unnecessary institutionalisation and forced institutionalisation, cases like hers come to my mind; she was effectively told she had to live in an institution if she wanted to get care. So, yeah, she could have ‘chosen’ to do so, but this clearly would have been a false choice, and it was also against her expressed wishes.
So, what’s happening in New Jersey?
New Jersey is too broke to move 1,850 people with developmental disabilities out of institutions in the next five years, so a lawsuit demanding it do so should be dismissed, an attorney representing the state said [yesterday].
Oh. The cost argument comes up a lot when it comes to disability rights. Everything costs too much, whether it’s making a business accessible or providing people with community based care, even when people are provided with evidence to the contrary, like a demonstration that meeting legal obligations (and doing the right thing) will actually be lower cost than the system currently in use. People say it ‘costs too much’ and ‘maybe later’ and we are expected to wait, and we do, until we realise the money’s never coming.
“Every state says ‘we don’t have the money now,’” said Samuel Bagenstos, a deputy attorney general from the U.S. Justice’s Department’s civil rights division.
According to the department, he said, “It’s $70,000 cheaper to serve a person in the community’’ than in an institution. “The state would save money because they could close a wing, a floor, a building.’’
The DOJ is on the case, which is good, because making a federal case (literally!) out of these things is difficult without either deep pockets, or the backing of the federal government. The Civil Rights Division is supposed to represent the government’s interests in civil rights cases and it’s very exciting to see it taking a more active role in disability rights cases.
The story in New Jersey gets better, though. You see, the ‘we can’t pay for it’ defense was actually the second defense presented by the state in an attempt to get the suit thrown out. What was the first? I’m glad you asked.
…that the state cannot be sued and the 20-year-old disabilities act violates states’ rights and should be declared invalid.
This defense was thrown out, which is a very good thing, because we do not want the Americans with Disabilities Act being deemed invalid on the grounds that it violates states’ rights. That would be very, very bad. The ADA is one of the primary mechanisms of enforcement for disability rights in the United States and numerous gains we’ve made legally and socially hinge on this piece of legislation. By making it clear that the sovereign immunity defense won’t fly in this case, the judge also laid the groundwork for throwing out this defense if people try to use it in other states in the future.
The case in New Jersey will proceed to trial, despite the best efforts of the state. The only logical verdict seems clear to me and hopefully it will seem clear to the judge as well.]]>
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.]]>
The article opens with a discussion of the rise in autism diagnoses over the last half of the 20th century, and points out that growing numbers of people diagnosed with autism as children are growing into adulthood, with an estimated 88,000 autistic adults in the US today and numbers that will only grow larger in the coming decades. All well and good, an interesting thing to talk about, but the sole focus of the article is on parents of autistic people.
What to do for the wave of children with autism when they grow into adults? There are an estimated 88,000 such adults today, and their parents all face the anxiety that hundreds of thousands more parents will confront in coming years.
Ah, yes, the parents. Yes, by all means, let’s focus on the ‘anxiety’ of the parents, because that is the important thing here; let’s not talk, for example, about the pressure to institutionalise autistic adults and what that means for actual autistic adults, no, let’s focus on what that means for the parents. Let’s not talk about lack of social equality for people with disabilities in general, about ableism and discrimination, about why it is that parents and caregivers are taken as authorities on disability over actual people with disabilities. Let’s not talk about the very real fears that people with autism have about being institutionalised and abused. The story links to a longer piece discussing the growing numbers of autistic adults, and again focusing on what parents are supposed to do, and concludes:
Then, those of you who are struggling with this question in your own life, please use the comments to discuss your plans and fears for your children — and let us know how the rest of us can “actively root” for them as they navigate the future.
Notice anyone missing from this statement? I sure did.
Despite discussing the fact that there are autistic adults right now, their opinions were not solicited, and parents were invited to tell readers how to support adults with autism. Parents. Not autistic adults. I guess we would have nothing of interest or relevance to say, eh? In the comments, which I do not recommend, an autistic adults did speak up, but not to challenge the narrative put forward in the article, that parents, rather than actual people with autism, should be the trustworthy sources of information on this issue.
Anna’s written here about self-appointed ‘advocates’ speaking for people with autism and all the problems embedded in that. This is a serious issue for many people with disabilities, but with autism, it is perhaps most stark, and most striking. We have major autism organisations without a single person with autism on their boards. Run entirely by parents, and sometimes actively rejecting input and requests for discussion from autistic people.
Of course, the comments exploded with a furor of ridiculousness as people demonstrated their ignorance about the deinstitutionalisation movement and other topics. Rank hatred oozed out of many of the comments, and if autistic adults hadn’t already been basically excluded already, they certainly wouldn’t have wanted to join in the conversation after scrolling through the comments to get to the submission box. The article made it crystal clear that commentary from us wasn’t deemed necessary or desirable, as did the comments.
It’s natural and understandable for parents to be concerned about the welfare of their children, and parents fighting hard to keep their children out of institutions and abusive situations most definitely have reason to be worried about what will happen when they die. I’m not saying parents don’t matter, but I am saying that it is not appropriate to position them as authorities over actual people with autism, including their own children. I am saying that people without autism should not be spokespeople for people with autism, that any conversation about ‘what to do with autistic adults’ should include autistic adults.
Yes, I would expect a parenting blog to focus on parenting, but an important part of parenting, to my understanding, seems to be supporting autonomy and self determination for your children, allowing them to speak for themselves, allowing them to become fully integrated members of society. This is most definitely an issue of relevance to parents, and part of parenting is knowing when to speak, and when to listen. It’s time to listen to people with autism, not their parents, and that includes autistic parents who may have some insightful input into this discussion; the underlying assumption in this article is that no parents have autism, and that is demonstrably untrue.
We want to talk about how to ‘support’ autistic adults? How about asking actual people with autism for their opinion on the matter instead of hosting free-for alls filled with ignorance and hatred in the comment sections of major newspapers?]]>
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
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.
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:
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.