I’m going to copy the email I just received from Disability Rights International:
It is with great sadness, that we at Disability Rights International (DRI) mourn the death of Paul Steven Miller, a former DRI board member and a legend in the disability rights movement in the United States. Paul died at his home on October 19, 2010, following a long illness, surrounded by his family and friends.
Born with achondroplasia, a genetic condition that results in dwarfism, Paul graduated from Harvard Law School in 1986 – several years before the passage of the Americans with Disabilities Act of 1990 – and experienced firsthand the need for such legal protections when 45 law firms rejected him during his employment search, with one member of a firm telling him the reason: Their clients would think that they were running a “circus freak show.” But despite facing such overt discrimination in his early career, Paul became an internationally acclaimed expert in discrimination and disability law and was the trusted advisor on these issues to Presidents Clinton and Obama.
Following the election of Bill Clinton in 1992, Paul was appointed White House liaison to the disability community. And in 1994, Paul was appointed a Commissioner of the Equal Employment Opportunity Commission (EEOC), where he served ten years.
In 2004, Paul left the EEOC and accepted the position of professor and director of the Disability Studies Program at the University of Washington. In early 2009, Paul took a leave from the university to become Special Assistant to President Obama for managing appointments and nominations to the Department of Justice and the Department of Education. Additionally, Paul served on the Obama transition team at the Department of Labor.
Paul is survived by his wife, Jenni Mechem and his two young daughters, Naomi and Delia.
Our thoughts and love go out to them as we remember the amazing Paul Steven Miller.
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.
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.
If you were lying awake last night thinking “You know what I need? I need to read a well-written, engaging book that deals with Deaf cultural history in the US, and that includes discussion of gender, race, and class distinctions. Gosh, if only I knew of such a book!”, I have exciting news: Signs of Resistance: American Deaf Cultural History, 1900-1942 is totally the perfect book for you!
Although the book is basically chronological, Burch divides the subject into overall themes and discusses them at length. She starts with the Oralism vs Sign Language in Schools issue, then discusses the growing Deaf community, Deaf-focused Associations and Clubs (including Deaf athletes competing in mainstream sports), barriers to Deaf people and working, and legal issues that Deaf people faced, including proposed bans on Deaf-Deaf marriages (think of the children!) and bans on Deaf people driving.
Throughout, Burch discusses intersectionality. While the chapters are primarily focused (due to sources) on white Gallaudet-educated men, she devotes time in every chapter to discussing how white women in the same situations were treated, and how Black Deaf people had almost entirely different experiences from white Deaf people, such as the segregated school system and racism within the Deaf community. I’m pretty certain this is Burch’s earliest work, and I know her later stuff focuses a lot more on these issues.
One thing I really liked about this book as well is that Burch puts a short sketch of the life of various Deaf people in every chapter. This gives us someone to “root” for, as well as someone to celebrate or make note of. It’s easy to look at a book like this, that talks about broad cultures, and forget that individuals were actually involved in it. I also like that, for the most part, these were people I hadn’t heard of. While Gallaudet and Clerc are discussed – they have to be, really, for any history of Deaf education in the US – the life sketches are of people like Alice Taylor Terry or Thomas Francis Fox.
I found the text very engaging, and not difficult to read. Like most people, I’ve groaned my way through dull prose that made me want to sleep rather than read, but Burch’s writing kept me wanting to stay up late reading.
I give this book 5/5 stars, and would totally recommend it to anyone. The only thing that makes me eager to put it aside is that I have some of Burch’s later books and edited anthologies in my To Be Read (TBR) pile.
When writing in my own space, I tend to make a lot of jokes about how much I enjoy doing “history in the future!”, by which I mean a lot of primary sources are on-line. Last year, for example, I randomly put the name of one of the people I was writing about into Google, and out popped a bunch of articles he’d written about his theories on Deaf people in the 1860s, which drastically changed my thesis.
For those of us who like to highlight disability related history, the internet can be a huge boon. Whereas as little as five years ago, reading Susan Burch’s description of the Hotchkiss videos for the National Association of the Deaf would have been my only way of learning about them, various video-sharing websites (especially YouTube) allow for us to see these videos, and get a better idea of their impact and importance, for ourselves.
Transcript, as provided by pdurr on YouTube:
Description: John Hotchkiss is an older white man wearing a suit and signing for the camera.
Excerpt of Hotchkiss discussing memories of old hartford from the NAD Motion Picture Project
translation of excerpt by P. Durr – NOTE translation’s accuracy is not confirmed.
“Another time Clerc called a boy who had passed by his house asking, “Please tell (name sign of bent L handshape going downward from top of lips to bottom of chin indicating a beard) S-T-E-W-A-R-D to please have wood delivered to me.” “My pleasure,” the boy replied and went on his way. But this boy completely forgot about this message as his mind was set on playing. Thus, it totally slipped his mind to inform Steward (name sign) of Clerc’s message of his need for wood and Clerc never received any.
A few days passed and again Clerc approached this boy, tapping him with his walking stick and holding him by the shoulders. “I told YOU to PLEASE tell Steward to bring me wood and you said, ‘Ah huh, Yes, Yes, Yes’ but instead you went off and completely forgot. Darn you for forgetting.” and he went off in a huff. As days went by, Clerc would continue to bump into this boy and would always say “Darn, you’re the boy who forgot” (hand at mouth) and stomp off.
The boy was embarrassed and became weary of Clerc’s insults so he decided to go to him and asking his forgiveness for having forgotten to deliver the message to which Clerc let out a joyful laugh and said “alright, you are forgiven, you are forgiven, be on your way.” And with that they departed.
Context, of course, is important. Hotchkiss is telling a story about Laurent Clerc, who is considered the father of the US Deaf Community – for certain definitions of Community, which I will get to in a moment. Dr. John Hotchkiss himself is a very important member of the Deaf community, having been part of the first generation of Deaf students to attend Gallaudet University. Once he graduated he took up teaching, and was a passionate advocate for the continued used of Sign Language in teaching Deaf children.
In the 1910s, the National Association of the Deaf began making several films of Sign Language masters such as Hotchins, and they toured the country. While they were mostly seen by Deaf students, there were hearing students who also saw these ‘silent’ films, exposing them to “the beautiful language” as well.
These films were created as a means of combating the oralist movement (requiring Deaf people to learn to lip read and articulate verbally, a movement that also attempted to ban Sign Language in schools), as well as recording the history of US Deaf people. Looking at the present, the increasingly easy access to video technology is leading to a similar growth in easily accessible videos by and for Deaf people, many of them on YouTube.
What is not obvious from this one video but would be if you went seeking out the rest of the National Association of the Deaf videos from roughly this time period is that “the beautiful language” that they’re preserving is pretty much the beautiful language of white men with the means to attend Gallaudet University. Gallaudet accepted one class of women pupils, and then refused to accept any more for over a decade. Even afterwards, women pupils were discouraged from attending, because they risked “stealing” jobs from more-deserving men. As well, there was a great divide between white and non-white/people of colour in terms of Deaf education. There was a segregated Deaf school system in parts of the US, and Black Deaf schools developed their own form of Sign Language. You can read a bit more about this at the Black ASL Project. Historians like Susan Burch make it very clear that there was no attempt by white Deaf leaders to support Black Deaf people, and only limited support in the non-segregated school system of the North and Western US.
I like to highlight some things in disability history because I find it frustrating that, if you want to learn about the history of disability in a non-specialized context, you’re probably only going to learn the tragedies. I’ve taken classes that have talked about forced sterilization and the eugenics movement, both in North America and abroad, but never had a class that dealt with the foundation of the Deaf press, say, or the National Fraternal Order of the Deaf – even in classes that were about Fraternal Orders in the US. I’ve taken classes that have focused on the resistance of marginalized people, but somehow fail to mention decades of resistance by people with disabilities, and often fail to mention even the success of the Americans with Disabilities Act.
We have a history that is more than tragedy, that is more than the last 20 years of fighting. It is not all brave plucky fighters, and it is certainly not all wonderful people who had no prejudices and only celebrated good things. People with disabilities are people, and I think talking a great deal more about this history is part of the way we fight against stereotypes and the boxes people put us in.
Commenting note: I am, as I said, on Thesis Time right now, which basically means I’m hardly at all around. If you decide to comment, please keep commenting policies in mind, and I’ll do my best to keep up with them.
Recently, I was on the commuter train home. I happened to be reading Susan Schweik’s bookUgly Laws: Disability in Public for a research paper. Two middle-aged women sat down opposite me, and one inquired as to what book I was reading.
Image: A grey banner divided in three parts. A photo of a young Helen Keller is in the center. On the right, it reads “Political Activist. Radical Thinker. Suffragist. Pacifist. Journalist. Socialist. Who was she?” On the left it reads “Helen Keller Mythbusting Day 2010”
A few years ago someone on a feminist site posted a list of the top 100 historic women in the US, and the list included Helen Keller. A commenter mentioned being surprised to find that out, because… well, what did Helen Keller actually do?
The answer to that question is what this Blogswam is all about.
First, I’d like to thank the wonderful, amazing, and totally awesome Jhameia of Intersectionality Dreaming for making our awesome banner while travelling across Canada! Thank you, Jha, you are awesome!
Second, if you post something for Helen Keller Mythbusting Day, please leave a link here in the comments.
The committee approved my thesis proposal (and I passed my French Proficiency Exam – necessary for Canadianists) and thus I’m now at the stage of my MA where I’m researching, reading secondary sources, and writing stuff up.
[When I lay it out like that it looks so sad and boring. This is the bit where I get to do what I want, in the archives! Looking at letters and school records! I get to apply theories and see if they work, and maybe even develop my own! This is totally my idea of how to have a fun summer! Also, the archives are air-conditioned, which helps.]
My particular project is focusing on the development of residential schools for blind and deaf children and youths. I’m looking at how and why they were founded, what their teaching methods were, and who they hired to work there. I’m also looking at the types of jobs that these children were trained for, and what that says about the way disabled children were perceived by society at large in Nineteenth Century Canada.
I’m also wondering exactly how many blind piano tuners and deaf printing-press operators the province of Nova Scotia thought it could support.
I’ve written before that the history I do is explicitly political. It’s partly about a part of our past that is highly neglected, and partly about arguing, simply by doing it, that this history is important, that it has long-term consequences that we’re still feeling.
But I also write it because people with disabilities have a past, a present, and a future. Because we’re important enough that having a history that’s not just focused on a few Great Examples – Helen Keller, Louise Braille, Beethoven, Terry Fox – isn’t enough. Because knowing how things turned out in the past might give us some insight into how things might be in the future.
Another reason I’m doing this is because it challenges people, and asks them to think.
Every time I tell people I’m doing disability history, “centering the experiences of people with disabilities in the historic narrative”, they are taken aback. They’re surprised. Just by doing history in my department, and telling people how awesome my research is, I’m making more of them think about disability, and about people with disabilities. Without ever having a conversation about language, people in my department have stopped referring to people doing unthinkable things as “mentally insane”. Without my ever leading a classroom discussion about theory and frameworks, my classmates discussed the assumptions about disability presented in several of the readings we did.
These are small things. If I’m lucky, I’ve made 30 to 40 people reconsider their ideas of disability and think about people with disabilities in the past.
My name is Anna. I’m what some people in North America would call a person with a disability, and some people in the UK would call a disabled person. My husband, many of my friends, all of my co-bloggers, and a large number of our commenters are also people with disabilities/disabled people.
Your blogger, Carol King, would instead refer to us as “the disabled”, and as pawns of the religious right. In her blog post Kevorkian and the Right to Choose , she wrote:
The “right-to-lifers” enlisted the disabled in their cause when they cautioned that allowing people to choose to die would soon become their “duty to die.”
I’m pretty angry about that. Not offended, Ms Magazine, angry. You see, I’m really tired of “the disabled” being treated like we’re unthinking masses. I’m especially tired of the feminist movement – you know, one that allegedly wants equal rights for all people, including women with disabilities – doing this. It makes me angry because I’m a feminist as well as a woman as well as a person with a disability as well as someone who is not the pawn of anyone, thank you very much.
Some people with disabilities support the right to die. Others do not. Others do in some cases and not in others. Each of us has come to the conclusions we have because we are reasoning individuals. Gosh, some of us are even feminists who use a feminist lens to come to our decisions, regardless of which of the many places on that particular spectrum of opinion we find ourselves.
People with disabilities deserve better treatment than you have given them. We are not a throw-away line so you can score some sort of points. We are people, and I’m appalled that a feminist blog like Ms would publish something that would treat us as otherwise.
Frankly, I am so fucking tired of this shit. I’m tired of smiling while feminist organisations treat people with disabilities like they’re afterthoughts and problems to be solved. Like we’re just pawns in politics, like we need to be appeased but never spoken to or considered, like we’re too angry or not angry enough, like we have to push this fucking rock of dis/ableism uphill while you – our “sisters” – stand by and politely look away.
“We will achieve our rights and the respect we deserve as women with disabilities.” “Because the issues of women with disabilities have often been excluded, the goal this year was to make sure the concerns of disabled women were addressed.” Oh, hell, just watch the whole damned thing – it’s subtitled – and see the commitment feminists made to women with disabilities. Ask yourself, seriously, Ms Magazine, why your new blog has decided not to talk much about women with disabilities. “No woman who attends this conference should be able to leave Beijing without thinking about the rights of women with disabilities.” Do you?
You know what? If that’s something you can’t do, let me sum it up:
Nothing about us without us.
You wanna talk “about” “the disabled”? How about talking to us? How about letting us talk for ourselves?
How about treating us – people with disabilities – the way you would like women like yourselves to be treated? As though we have some understanding of our own experiences, our own opinions, our own thoughts. As though our thoughts do not belong to anyone but ourselves?
As though we are thinking beings?
Again, my name is Anna. I, like you, am a woman, and I am also a person with a disability. And we deserve better from you.
I encourage you today to check out Gender Across Border’s Blog(swarm) for International Women’s Day. Throughout the day, the GAB editorial board (including Emily Heroy, Colleen Hodgetts, Jessica Mack, Carrie Polansky, Erin Rickard, Elizabeth Switaj and Tatiana McKinney) will be updating GAB to highlight particular posts. It’s never too late to participate!
There were two themes, and I, of course, took this one:
Describe a particular organization, person, or moment in history that helped to mobilize a meaningful change in equal rights for all.
I think it’s fairly clear that I admire Helen Keller, and resent the way what she did with her life has been reduced to parody, the subject of infantile jokes about people who are Deaf-Blind, and forgotten about. When people bother to tell bits of her story, about her learning words at a well after weeks of patient tutoring from Anne Sullivan, it becomes a form of Inspiration that’s based entirely on pity. Oh, how tragic her life could have been, shrouded in darkness and silence. And then she learned to speak! And all was well!
I’m going to interrupt this post to point you towards a previous one I wrote about Keller: Feminist Icons
[This part is actually quoted from the book Lies my Teacher Told Me.]
Keller’s commitment to socialism stemmed from her experience as a disabled person and from her sympathy for others with handicaps. She began by working to simplify the alphabet for the blind, but soon came to realize that to deal solely with blindness was to treat symptom, not cause. Through research she learned that blindness was not distributed randomly throughout the population but was concentrated in the lower class. Men who were poor might be blinded in industrial accidents or by inadequate medical care; poor women who became prostitutes faced the additional danger of syphilitic blindness. Thus Keller learned how the social class system controls people’s opportunities in life, sometimes determining even whether they can see. Keller’s research was not just book-learning: “I have visited sweatshops, factories, crowded slums. If I could not see it, I could smell it.”
I think Helen Keller changed the world, or at least did an awful lot of work towards changing it. But, even with focusing on her achievements, on her work, it’s important to put her in context.
Helen Keller was a white middle-class woman from the US. She was young and pretty and very talented. Before she became famous as The Deaf-Blind Girl (because, of course, there can only be one Deaf-Blind Girl, and she is always white), Laura Bridgman was The Deaf-Blind Girl. And Bridgman was not as pretty, not as nice, and not as accomplished as Keller.
I mention Laura Bridgman because, if the whole purpose of the Helen Keller Narrative was Nice Deaf-Blind Girl Does Good (and thus you, gentle reader, should put your life in proper perspective!), then Bridgman fits almost the same bill. She learned to read and write, wrote letters to her fans, was on public display with ribbons to hide her eyes, and was just as famous as Keller. So why is our dominant narrative Keller and not Bridgman?
Well, what better way to discount someone’s radical roots than to turn them into an Inspiring Story, and nothing more?
So, for International Women’s Day, I want to remind readers that there are certain stories that we tell about certain women, and that these stories have a purpose.
I’m reading The Great Cat Massacre and Other Episodes in French Cultural History, by Robert Darnton. I’ve just finished the first chapter, which makes some interesting arguments about folk tales and their use in determining what non-elites/peasants thought about… well, anything in a time period where most of them lived nasty, brutish and short, unrecorded lives.
His argument is basically that one cannot just look at folktales – whether raw, or prettied up for modern audiences, or in translation or whatever – and determine much of anything. Instead, one needs to do two things: First, one needs to look at all the surviving folktales, all the variations, and pick up the themes. Second, one needs to compare those themes to the themes one gets from folktales in other regions. It’s only in the comparison of themes that one can sort anything, and even then it’s feeling around in the dark and hoping you can sort out the elephant from the cake.
ANYWAY, what I find very interesting (as an historian who looks for hints and tips of history of disability) is where people are totally talking about disability while at the same time dismissing it or not even acknowledging it.
It’s problematic, of course, to try and apply our modern notions of disability to the past and call it good. Even the concept of disability didn’t really exist the way it does now until sometime around the industrial revolution, and there are tons of examples of people being described by contemporaries in ways that modern audiences would consider “disabled”, but that’s never anyone’s concern. So, you’ll read in the past people described as taking to their beds for months at a time, having tics and the like, but no one remarks on it as anything other than just how that particular person is.
There are ten references that could be read as an opportunity to discuss mental health in A Midwife’s Tale. Ulrich mentions four people who are considered insane by the people around them – John Howard is described on page 67 as having “sank into hopeless insanity”; Rebecca Foster is “mentis inops” according to a letter outlined on page 127; and both Tabitha and Mary Sewall are described by Ulrich as suffering from “mental illness” or derangement on page 260. Three people commit suicide, including James Purrington. One of Ballard’s patients seems to suffer from post-partum depression, while Ballard herself describes her mental state as one that reads as familiar to many people with depression on page 226.
There are a variety of reasons the author might not have gone into that discussion – the one I think is going on is that the book was published in 1990 and there was even less discussion of disability in history then than there is now – but it did stand out to me.
The Great Cat Massacre does something a bit different though, at least in the first chapter.
In describing what French peasant did when hard times were really hard, Darnton writes:
…life on the road meant ceaseless scavenging for food. The drifters raided chicken coops, milked untended cows, stole laundry drying on hedges, snipped of horses’ tails (good for selling to upholsterers), and lacerated and disguised their bodies in order to pass as invalids wherever alms were being given out. … They became smugglers, highwaymen, pickpockets, prostitutes. And in the end they surrendered in hopitaux, pestilential poor houses, or else crawled under a bush or a hay loft and died…
Yes, of course Darnton. You describe a life of abject misery and back-breaking labour, so obviously people faked being disabled all the time.
Throughout this first chapter he says things like (in describing a folktale) “…two discharged soldiers draw lots to see which shall have his eyes put out. Desperate for food, they can think of no way to survive except by operating as a team of beggars, the blind man and his keeper” (pg 38), describes Simple Simon as “the harmless village idiot” (pg 40), talks about Rapunzel’s lover being blinded (pg 52), and witches adding additional hunches to hunchbacked beggars just because (pg 53).
And yet, obviously people faked being disabled all the time. Because there was nothing going on that might lead to actual disabilities.
I know, it’s a throw-away comment in a book originally published in 1984 (disability-focused history is more accepted now – we even have an association), but it bugs me. It’s not a unique occurrence, and it’s difficult to know quite how to respond.
For me, of course, the thing it does most is highlight people’s biases. When I previously tried to discuss this in a class, I could not actually get the professor to understand my complaint. “But people do fake disabilities all the time!” was her response, and there are only so many hours in a day one can give towards advocacy work.
But people with disabilities are quite common in the literature, if you actually pay attention to it.