This post is about the book version of Wicked, not the musical (they’re quite dissimilar). There’s one minor spoiler for the musical, and I’ve tried to minimise the spoilers about the book, though this is a book review so watch out!

Wicked is concerned with the story of the Wicked Witch of the West from Baum’s The Wizard of Oz, which is a fabulous premise, I’m sure you’ll agree. Well, having seen the musical previously, I was a little apprehensive about social justice concerns in the book. And we get off to a flying start with this section of the first scene:

‘[…]What a Witch. Psychologically warped; possessed by demons. Insane. Not a pretty picture.’

‘She was castrated at birth,’ replied the Tin Woodman calmly. She was born hermaphroditic, or maybe entirely male.’

And the ‘patronizing speculations,’ as the Wicked Witch of the West, Elphaba, thinks of these remarks (she’s spying on them in this scene) don’t end there. So, naturally, I was wary from there on out. Look, there’s lots I could talk about in this review: what I found to be a half-baked treatment of race, the truly gorgeous worldbuilding, many “what the pancake” moments, some of the most rounded characters I’ve found in fiction. But I think the treatment of Elphaba’s sister, Nessarose, in terms of her being disabled, needs a whole review to itself.

Before I get to her, though, I should point out that Nessarose is not the only disabled character in Wicked. There’s one memorable paragraph in which Elphaba remembers the last time she sees her old school friend, Tibbett. She’s nursing him and it’s the first time she sees him since he became an “invalid”.

Then, a year ago, pale invalid Tibbett was carted to the Home for the Incurables. He wasn’t too far gone to recognise her even behind her veil and silences. Weak, unable to shit or piss without help, his skin falling in rags and parchment, he was better at life than she was. He selfishly required that she be an individual, and he addressed her by her name. He joked, he remembered stories, he criticized old friends for abandoning him, he noticed the differences in how she moved from day to day, how she thought. He reminded her that she did think. Under the scrutiny of his tired frame she was re-created, against her will, as an individual. Or nearly.

So he’s portrayed as one of the “Incurables,” far gone into hopelessness, an object of pity. Yet still with his inner strength – which, while it is conveyed with tenderness and some depth, is ultimately a vehicle for a Very Special Lesson for Elphaba. And we never get to hear his voice; he’s just here, briefly, portrayed through the voice and memory of his carer. Which is something we’ve all encountered before.

So, to Nessarose, who is described by her sister as having been ‘horribly disfigured from birth’ as she doesn’t have arms. Whose movement is described by the narrator in sinuous, snake-like terms, bizarrely fascinating to look at. Who is conveyed as so pretty and charming, but so helpless and unfortunate, poor dear. Who just can’t get a man because who wants to be with someone like her?

No. No no no no. No. And I thought the sickly sweetness of the character in the musical was bad. It’s like Maguire was trying to cram as many disability tropes in as possible.

But that’s not all there is to Nessarose. She’s a major political figure, which is pretty cool. However, she’s a tyrant, which is… on the one hand, a powerful disabled woman? That’s pretty cool. On the other, another disabled villain? Are you quite serious? What really ties the characterisation of Nessarose into a complex ball of flat out ableism and confusing hints of marvellousness is how her religiousness is treated. There is likewise a little more nuance here. All the way through reading, I was constantly wondering how it was going to play out: was she going to be the unfortunate disabled person of faith who gets manipulated into being a Very Special Lesson to one and all? Was she going to turn into a dangerous figure, driven by religious extremism and her rage about her unfortunate (unfortunates in this paragraph are sarcastic, by the by!) disability? I certainly wasn’t expecting either her faith or her disability to be treated respectfully. And you know something? I was right. She ends up being a theocratic tyrant who has some pretty nasty effects on her people. A thousand points if you too were betting on an evil disabled dictator.

I want to touch on some of the discrepancies between the book and the musical. Anyone who has seen the musical will remember the scene in which Nessarose arises from her chair in one of those “It’s a happy piece of popular culture and I can walk!” moments. Which is bad enough, but, hang on, she doesn’t use a wheela chair in the book! I’m just wondering why on earth the makers of the musical decided Nessarose should be changed to a four-limbed wheelchair user. It’s as though impairments are interchangeable and a wheelchair is a universally applicable marker of disability. I think it would have been great if they’d decided to be true to the book and employ actors who don’t have arms for the musical. I guess we can dream!

In conclusion: skip the book unless you are really into quality worldbuilding and some pretty beautiful characterisations.

©2010 FWD/Forward. All Rights Reserved.

Do you do any creative things (artwork, web design, creative writing, photography, playing a musical instrument or instruments, crafts, knitting) for fun? If so, what are they, and what do you enjoy about them? Please feel free to share links if you have them!

Alternately, are there any creative things, works, or folks that you’ve been inspired by as of late [please warn for TV show/movie/book spoilers in comments]?

©2010 FWD/Forward. All Rights Reserved.

Many news outlets covered the event, including CNN. ‘Obama marks 20th anniversary of landmark disabled rights law‘ features not one, but two videos.

Guess how many of them are captioned.

You know what’s a really bad idea? Not captioning stories about the Americans With Disabilities Act. You know what’s an even worse idea? Not captioning stories about events attended by Marlee Matlin. Matlin’s on the case on Twitter:

@CNN – ironic that your coverage of ADA ceremony with @barackobama at @whitehouse ISN’T CAPTIONED!http://tinyurl.com/326npmy

Feel free to Tweet @CNN and ask why their story about the ADAhttp://tinyurl.com/326npmy WASN’T captioned! FAIL!

@KyraCNN your story on ADA & its future WASN’T captioned on CNN on line. http://tinyurl.com/326npmy

Still no word from @CNN about lack of captions on their internet story about accomplishments of the Americans with Disability Act.

The points Matlin is raising are important. Especially given that a bill improving media accessibility just cleared the House of Representatives, this is more important now than ever, because the government is actually starting to think seriously about these issues and it’s taking steps to improve media accessibility. As Matlin points out, that bill doesn’t mandate captioning for web-only content. If content hits the airwaves, it has to be captioned, and when it is displayed online, those captions have to be made available. But if content is developed specifically for a website? No captions needed, under the bill’s terms.

We need Internet captions. We need them now.

CNN has a feedback form and they say they welcome comments. Internet, you know what to do.

©2010 FWD/Forward. All Rights Reserved.

Sandra Graf (SUI) nears the 20km mark during the 2010 Paris Marathon. Photo by Flickr User siobh.ie, Creative Commons License.

Alex Nesbitt at Digital Podcast: USA Network Uses Fake Blind Guy to Celebrate Americans With Disabilties Act (h/t Media dis&dat)

A sighted person is playing a blind person, and there are not any real blind actors on the show that I know of.

What does that say about their real respect for the ADA.

If they wanted to make this about people with disabilities why not extend the principles they claim and find a blind actor to play the part. After all, if the CIA can do it why not Hollywood.

ephemeralhope at If I was walking through a sad art gallery…: You Know You’re Blind When…

I am sixteen years old. Many people believe that I am too young to instruct my elders in how they should be treating people. However, I have lived all my life with a disability that has affected the way people perceive me, I know how it influences the way I feel about myself and choose to live my life. I will not judge you for your point of view towards me and my disability; I will only say that I respect those who see me before they see my disability more than the people that only see me as the blind girl. I do not deny my blindness, nor do I deny my independence and determination to prove that there is more to a person than their disability.

Remember this: if you ever became disabled you would still want to be treated as the person you are today, so do I.

Rhianon Elan Gutierrez at PGA Diversity: We Are the Audience Too: Responsibility as Creators

I am a filmmaker and I have a hearing loss. I understand both sides of the experience: as a creator and as an audience member.

I know how difficult it is to raise money to have the equipment you need, the actors you want, the location that’s beautiful, and the crew you know you need to feed and pay. I’m passionate about the process but what makes it challenging (and ultimately more rewarding) is the responsibilities that I have not only to my goals, my craft, and to my team, but to my audience. During the process of making my films and even afterwards, I make a commitment to be respectful of the access and communication needs and abilities of my cast and crew. I learn new things every day from them and about them. When it comes to my audience, I think about the one person of two hundred. It’s easy to forget this person, but I’ve been this person so I know that I must remind myself of those moments. I love the experience of making films and I especially love to see the impact that my films have on others and the difference that it makes when they can follow the story. I know I am not alone in sharing this sentiment.

Steve Kolowich at Inside Higher Ed: For One, for All

When advocates for students with disabilities asked Stephen Rehberg, an associate academic professional at Georgia Tech’s Center of Enhanced Teaching and Learning, to help create workshops to teach science and technology faculty members how better to accommodate disabled students, Rehberg’s answer was simple: “No.”

“Trying to teach faculty about accessibility is a dead end,” Rehberg said last week, during a session as Blackboard’s annual user conference here. “They’re not going to come to the workshops, and [if] they get there, they’re going to glaze over. I said, ‘I’m not going to waste my time or the grant money.’ ”

kissestokashmir at Your fucking culture alienates me: Something I have been thinking about a lot

And what a weird thing to care about. Who would mourn the loss of their birth defect? (Syndactyly is the official name of my condition.) I would most likely feel different about this if it was located on a more visible part of my body, such as the hands, or actually impeded my functioning. But it didn’t. It was just something unique about me, something that set me apart from everyone else I knew and I enjoyed having something that was unique to me and didn’t know that I enjoyed it until it was gone. I guess what I’m trying to say is that there’s no point in robbing people of what makes them different or unique and they may very well end up resenting you for the imposition into their lives. What you may consider a defect or an oddity, they may consider a vital characteristic of their personality. And you do not have the right to take it from them or to characterize what it means for them.

Astrid von Woerkom at Astrid’s Journal: Autistic Student Denied Education, Loses Court Battle

This is sad. What is sadder, is that quite a number of students with disabilities are left without education for reasons similar to A.’s. School distritcts excuse lack of education by the argument that they don’t have the resources to educate “difficult” students. Even in countries like the Netherlands, where school attendance is compulsory – I don’t know about the UK -, students are left behind to sit at home.

©2010 FWD/Forward. All Rights Reserved.

Tragedy struck! She’s inspirational! She refused to give in! Miracles! Determination! You can do anything if you try! Seriously, I think this article managed to hit every single square on the disability bingo card. I’d like to commend Doug Robinson for coming up with a tough act to follow. I’m sure I couldn’t possibly find another article even close to the amazingness of this one. It is just not possible. The world would collapse if there were two, you know what I’m sayin’?

Writing about the Supercrip stereotype at Bitch, Annaham said:

The myth of the Level Playing Field holds that American society gives everyone—no matter what their background or present circumstances—equal chances to succeed, and that most of the problems that marginalized groups have traditionally faced have already been solved. All folks have to do is work hard, have a good attitude, and their success will be imminent! Therefore, if there’s a Level Playing Field, there is no reason that people with disabilities can’t do superhuman things and succeed. Of course, the Level Playing Field is not real (hence its mythic status). Yet, many people who are effectively not marginalized regularly tell those who are that they, too, can “make it” if they just work hard and/or visualize their success. And so Supercrip remains the exception that many abled folks like to bring up; using similar logic, non-fictional Supercrips throughout the ages—along with many other people from marginalized groups who have “made it”–supposedly “prove” the existence of the Level Playing Field.

This profile of a woman with disabilities hits all of these issues right on the nose. Readers are reminded again and again that she refused to give up, refused to listen to doctors, insisted on doing things ‘the hard way.’ She used a manual chair instead of an electric one. She pursued a degree in singing even though her mean voice teacher said her voice was ugly. She won’t sit back and live high on the hog of government benefits, nosiree, she’s not the handout-taking type.

If you just try hard enough, you can accomplish anything. You just have to want it enough. These narratives are particularly pervasive in US society, where we are trained from a young age to believe in the American Dream and Bootstraps and other cultural myths so internalised, we often don’t even recognise them when we express them. Many of us believe, on some level, that people who work hard get what they deserve, and people in trouble got there because they didn’t work hard enough. These attitudes contribute directly to resistance when it comes to combating discrimination, because apparently if we just tried harder, ableism and discrimination would go away.

Curiously enough, she doesn’t mind handouts from G-d, just things like antidiscrimination laws and government benefits. This emphasis on spirituality is not a terribly surprising thing to see in a Mormon publication, but the piece is rife with references about how ‘blessed’ she feels, and it sets up a classic and unbeatable narrative: Why can’t you be more like her? She’s not angry and bitter like you! Why can’t you just get a job already? She did it!

“I was told a long time ago by a friend that feeling angry will stop your progress,” she says, “that if you feel sorry for yourself, if you’re going to feel bad, just give yourself 10 minutes, and then it’s over and you go on. Some things you can’t change.”

Quotes like that never get used to beat us up and remind us we’re being bad people, of course. They never are weaponised in the form of demanding questions asking why we can’t be more like that nice, inspirational lady who doesn’t let her disability get her down. Women like this are never pointed to as role models and are never used to abuse the rest of us for not just being better good cripples.

Depictions like this are actively harmful. As Annaham pointed out, Supercrip narratives are also extremely common. The media loves stories like this and eats them up, presenting them to readers and viewers with a pre-packaged narrative that everyone knows and understands because they have seen it before. When nondisabled people encounter the same story over and over again, they expect all people with disabilities to be like this, and they find the reality, that we are unique individuals with different types of attitudes and bodies and approaches to disability, highly unsettling.

These narratives hinder conversations about disability discrimination, and for many disabled readers and viewers, they are highly alienating.

©2010 FWD/Forward. All Rights Reserved.

Tonight is for us, and about us! Tonight is a time for us to celebrate our accomplishments and to redouble our efforts to bring about true equality for all persons with disabilities in Canada and around the world.

This year, Canadians with disabilities are celebrating Canada’s ratification of the UN Convention on the Rights of Persons With Disabilities (CRPD). While it may not provide us with a lot of new rights, it sets out in far greater detail than any human rights code or the Charter of Rights and Freedoms ever did what a truly accessible and inclusive Canada can look like, in important areas of life that are critical to our participation in the economic, political and social life of our communities – transportation, employment, education, communications, access to information, etc. The Convention also requires Canada to collect and disseminate data and to submit a comprehensive report to the Secretary-General of the United Nations within two years after ratification and every four years thereafter on measures taken, and civil society is to be directly involved in the development of these reports. This means involving us!

The development of this Convention traveled a unique path. It took the least amount of time of any UN Convention to be concluded, and it involved far more participation from civil society than ever before. That means involvement by us, and many groups representing persons with disabilities participated actively in the negotiations at the UN that resulted in this Convention. There are important lessons to be learned from having this kind of direct participation in developing any new initiative that directly affects our lives.

Last year, the President of the Alliance for Equality of Blind Canadians, Robin East, developed a new way of addressing our needs and aspirations. He coined the new phrase, “rights holders.” We are Rights Holders! What does he mean?

Too often, governments like to lump all of us, consumers, parents, service providers, etc. under the same umbrella of “stakeholders,” and while all of these groups may very well have a “stake” in the outcome of a new piece of legislation, policy or program, we are the ones most affected. We are different, and must see ourselves as “rights holders,” and not just another group of mere stakeholders. What this means is that we must occupy the primary and preeminent place at any table that is discussing anything that directly impacts our quality of life.

You are all familiar with the favourite phrase of the disability rights movement, “Nothing about us without us!” Now that Canada has ratified the UN Convention, it is critical that we rights holders participate as directly in its implementation as we did in its design, to ensure that it makes a tangible difference in the lives of all Canadians with disabilities, to make it become Canada’s national disabilities Act.

By contrast, the much heralded Accessibility for Ontarians With Disabilities Act (AODA) continues to move at a snail’s pace. After over five years, only one of the initial five accessibility standards has been issued as a regulation, though more are expected later this year. It is hard to imagine that Ontario is even close to being on track to achieve full accessibility by the far off date of 2025, and it is hoped that Canada’s ratification of the UN Convention will spur some renewed commitment and action to the AODA.

It is too often argued by representatives from governments and the obligated sectors that they “would like to do the things we wand and need, but these changes will simply cost too much.” We have countered that the real barriers are not cost, but a lack of political will and a question of priorities.

The Ontario Human Rights Code has covered persons with various disabilities since 1982. Governments, the public and private sectors have had over 25 years to make their premises, websites, products and programs fully accessible. How much more time do they need? If they have ignored their responsibilities and dragged their feet over all these years, stop blaming us – stop blaming the victims. It’s simply not our fault.

After the preposterous expenditure of an estimated $1.3 billion (that’s billion) on security for the G-8 and G-20 Summits, and countless millions of dollars on our involvement in the war in Afghanistan, persons with disabilities never want to hear the cost excuse ever again … never again! Resources are not unlimited, but whenever a government really wants to do something, it seems to magically find a way to finance its priorities.

So what am I asking you to do?

1. Write letters to the Editor of your local newspaper, raising disability issues;

2. Ask all candidates for Mayor and Council in the upcoming municipal election about their platforms, and what they commit to do to advance our agenda;

3. Get more involved in the disability rights movement. Join a group like the Alliance for Equality of Blind Canadians (AEBC), Citizens With Disabilities Ontario (CDWO) and sign up to receive updates from the Accessibility for Ontarians With Disabilities Act alliance, or find the consumer organization in your area that best represents your issues and ideas.

In closing, I want to mention just one more point. Many of us who have been on the front lines, in the leadership of our movement for many, many years are getting old and growing tired. We need you to get more involved. We need your energy, skills and new ideas. We cannot expect the system to hand us our rightful place, our history teaches us that it rarely does! Moving our agenda and achieving our goals is up to us. We must make it happen.

Some of you will be familiar with the phrase “Full Participation and Equality.” It’s an excellent phrase. It’s not a new phrase. It was the theme of the International Year of the Disabled Person (IYDP) way back in 1981.

Since then, we have come a part of the way up this road, but we still have far, too far to travel. Today, we seek legislation and new programs that will lead to that elusive goal, but today we must spend far too much of our time preventing the introduction of new barriers.

It’s time governments, the private and public sectors recognized our value, and commit to work with us to realize the IYDP motto.

We want our rights. When do we want them? Now!

©2010 FWD/Forward. All Rights Reserved.

Warren Spires is the president of Right to Play Canada, and the organizer of the Right to Play charity Skate. Chantal Petitclerc is a disabled athlete, one of Right to Play’s ambassadors. (Photo by Flickr user NailaJ, Creative Commons License)

RMJ at Deeply Problematic: Reminder: Disability Carnival!

The original due date was yesterday, but I’m going to extend my call for submissions to the day of the carnival, Thursday July 29, at 9 am EST!

Amy Cohen Efron at Deaf World As Eye See It: HR3101 Passed Unanimously!

As of 3:35pm – A tweet from Pratik Patel (@ppatel) who is a New York entrepreneur, running a business, working at University, and a passionate advocate for the blind and other causes, with a huge announcement!

This is fantastic. #HR3101 passes with a unanimous vote in the House of Representatives.

UNANIMOUS???? No opposing vote? It is voice vote that was passed today at the House of Representative with no one opposing. Not even one “nay” been voiced! Pratik Patel witnessed it on C-SPAN channel today at around 3:35pm.

(HR 3101 is the Twenty First Century Communications and Video Accessibility Act, designed to make communications more accessible for people with disabilities! Congratulations to everyone who worked so hard to get this bill passed.)

Lisa Factora-Borchers at My Ecdysis: Dear Sister Anthology

Call For Submission

Dear Sister is an anthology of letters and other works created for survivors of sexual violence from other survivors and allies. It is a collection of hope and strength through words and art.

Kathji Wolfe at The Washington Blade: Get to know a queer crip (via Media dis&dat)

One in five Americans (51.2 million) has a disability and from three to five million people are LGBTQ and have disabilities, according to the U.S. Census Bureau. I am one of many who are disabled in the queer community. We are of all races, classes, ages, genders and occupations. Reclaiming the pejorative terms “queer” and “cripple,” increasing numbers of us proudly call ourselves “queer crips.”

Yet our presence isn’t well known or always welcomed in the LGBTQ community. Many places (from bars to shops) and events (such as conferences) in the queer community aren’t accessible to folks with disabilities. My friend, Hugh Gallagher, used a wheelchair. Gallagher, the author of “FDR’s Splendid Deception,” worked on Capitol Hill. “I can only get into one gay bar [in Washington, D.C.],” he told me in 2004, the year he died.

NASA: Astronaut Caldwell Dyson Sends Sign Language Message From Space Station (via @MarleeMatlin, be advised, there’s a bit of patronisation)

The International Space Station has had guests from all over the world, representing myriad languages. But until NASA astronaut Tracy Caldwell Dyson came aboard, one language was still not represented. Said to be the fourth most commonly used language in the United States, American Sign Language, or ASL, made its debut on the space station in a special video recorded by Caldwell Dyson.

Transcript below the fold.

(Video opens on a woman in the International Space Station. Her hair is floating around her head.)

Hi I’m NASA astronaut Tracy Caldwell-Dyson. Here I live on the International Space Station. We Say ISS. The space station is about 220 miles over Earth. That’s pretty fat! Traveling to the space station is very fast, faster than a speeding bullet. Wow. I want to communicate the importance of what NASA is doing here in space and on the ISS. The school for the deaf has graduated many students who have gone on to do wonderful things. One thing I have learned is that deaf people can do anything. The only thing that can’t do is hear. Maybe some day you can fly into space and live on the ISS. For more information about what NASA is doing in space on the ISS, go to the web, type: www.nasa.gov/station

Now some quick questions people asked me:

Question: What is your job on the ISS?

Answer: Well everyday, maybe I work to help build things on the ISS. Some days I help to maintain the ISS, and most of the day I do science (chemistry). Some days I communicate with people all around the world. That is what I think is very important.

Question: How did you become interested in sign language?

Answer: Long time ago, when I was a young high school student, I met a girl who’s deaf; she’s same as me, a sprinter on the track team. So she taught me how to sign.

Question: How did you learn so much sign language?

Answer: Well, after high school, I went to college and when I wasn’t in class for chemistry, I was in class for sign language. I went to more places to learn sign language. After college, I went to graduate school. I learned more sign language because I taught chemistry to students and I had one student who was deaf. She needed help understanding chemistry because she had a teacher who wasn’t deaf, and she couldn’t watch the teacher, read and watch the interpreter all at the same time. It was difficult to understand chemistry (for her). I helped her and she helped me learn new vocabulary words. Like before, I didn’t know how to sign chemistry electrons…words like that.

Okay, well what’s all the time I have for questions. Thank you very much. I’m Tracy Caldwell-Dyson and I hope you have a wonderful day. Bye!

(she grins and floats away)

©2010 FWD/Forward. All Rights Reserved.

How do you convey that you’re not a touchy-feely person without coming across as rude or a prude? Ever since starting my freshman year of college, I’ve encountered a startlingly high number of males who think it’s appropriate to massage my shoulder in class, put their hand on my leg when we’re eating lunch together, or pat me on the head when they walk by me. I find this uncomfortable and would like to tell them to stop, but at the same time I know that not everyone has the same physical boundaries. In regard to innocuous things like hugs, is it ever polite or reasonable to say “No, thank you”? T.S. / Chelmsford

A perfectly reasonable question to ask, and one of particular relevance to me because I don’t really like being touched by people I do not know well, or people I know well, honestly, except in set circumstances when I can prepare for it. I know that some FWD readers have sensory issues surrounding touch, for a wide variety of reasons, and I thought this letter would be a good one to highlight for Dear Imprudence before I even read Miss Conduct’s answer.

Of course you can say no to a hug; it’s your body. Keep in mind, though, that those “males” you are in school with are figuring out their physical boundaries and social selves as well. I’m not saying this to tell you to put up with being touched in a way you don’t want, but to point out that college is a big social experiment lab, and the guys don’t really know what they’re doing, either.

So, as long as you’re all working in the same social laboratory, be a good lab partner. Assert your boundaries bluntly and with humor: “It’s hard enough to concentrate in Econ 1 – one more back rub by ‘the invisible hand’ and I’m going to pass out in there, OK?” “Did you seriously just pat my head? Oh no you didn’t.” People will get the idea that T.S. isn’t so much a touchy-feely type and will start leaving you alone. Maybe some folks will think you’re rude or a prude. The others will think you’re a nice, slightly bossy person who doesn’t like to be touched by strangers. Trust me, you could do worse.

Ok, so, the first sentence is strong. Go, Miss Conduct, go. That’s the way to lead things off with a bang. You are absolutely allowed to express your bodily autonomy and to say ‘no, please do not touch me,’ and that doesn’t make you rude or a prude. It just makes you someone who prefers to not be touched, for whatever reason, particularly by random people.

But where Miss Conduct goes from there? It’s a locomotive hurtling down a hill without any brakes on. Are you telling me, Miss Conduct, that college-age ‘guys don’t really know what they’re doing’ when they force unwanted intimate touch on people? Were they tuning out for the ‘keep your hands to yourselves’ lesson in kindgergarten, perhaps? Au contraire, Miss Conduct, they know exactly what they are doing, because the hand on the leg/spontaneous backrub are two moves straight out of any number of men’s advice magazines telling college-aged men how to ‘get chicks.’

You can’t tell me this is a social laboratory. By college, the same social attitudes and norms present in society in general about bodies and who gets to control them are well established. Young men handling their classmates are joining a long and venerable tradition. It’s called ‘rape culture,’ and it absolutely starts with an ‘innocuous’ backrub in some cases.

I like that Miss Conduct came up with some snappy comebacks with the goal of getting people to stop touching you without making A Scene out of it, a common problem in environments like classrooms. But even this advice leaves me with a sour taste, because it puts the burden on T. S. to fight rape culture by being ‘nice,’ if ‘slightly bossy.’ I personally favour a ‘pardon me?’ or a ‘what are you doing?’ or just a snarled ‘don’t touch me’ when I am not interested in being nice to people who are violating my personal space and exerting ownership and control of my body and I do not appreciate being told that I am under an obligation to be nice to people who are touching me without my consent.

It’s bad enough that I feel constantly forced to ‘accept’ things like handshakes and hugs when they make me deeply uncomfortable because to do otherwise is to Make A Scene. A thousand little cuts occur as I allow my boundaries to be violated in the interests of making nice, of facilitating social interactions, of just getting through an interaction so I can move on to the next thing. There’s a very limited circle of people I enjoy hugging and even fewer people I will initiate hugs with, and if some random person started rubbing my back, they would do so at their own peril. I bite and I can move pretty fast when I want to, you get my drift?

How do you respond when people force unwanted touch on you? Do you find yourself compromising your personal boundaries in order to avoid drama in social interactions?

©2010 FWD/Forward. All Rights Reserved.

Here are are some of Rawk’s pieces:

‘Body Mapping–Never Give Up’ is an embroidery on canvas piece that I find intensely visually interesting. Interacting with it personally, it speaks to a lot of the disassociation I feel from my own body as a transgender person struggling with the aspects of my body that are not in alignment with my gender identity, and also to my own ongoing exploration of my body, and the social attitudes about body and propriety that act to reinforce the sometimes overwhelming disassociative emotions I experience.

‘Moar Bubblz.’

Rawk erases and recreates drawings to mirror an epileptic view of the world in which grounds are swiftly changing underfoot, identities are erased and recreated and cultural knowledge comes by personal directives.

You can see a video interview with Rawk here (with a spinning demonstration!). Here’s a transcript, kindly provided for me by Rawk:

My name is Wolfie E. Rawk and I moved to Philadelphia in 2008, and I came here because of the queer, transgender and arts community. My medium of choice is fabric art and fibers. And this piece is called, tentatively, “Stick with your kind” I think it’s about violence and being trans. It’s like, “stick with your kind,” like, someone else telling you that but also internally thinking that for safety. Well, I use fabric as a medium because I think it’s really utilitarian, being a transgender and disabled person I have like a really fragmented view of realities sort of? Or like, like, I have epilepsy and when I have seizures it’s kind of like it can be, like, a really violent jarring break from reality, or it can be this really sort of like soft like sedated experience. I make my own yarn, some of it is like this stuff right here. Using fabric in my work I can like mirror this sense of violence that I’ve had internally and also, like, done to me. And I can sort of make steps to heal that by sewing the pieces of fabric or by mending them or kind of recreating this sense of reality that more matches my internal existence. I think art for social change, in my interpretation, is kind of…there’s an internal process where art can be very healing or have this really healing power that can kind of soothe wounds that are inflicted on people, either on an individual level or on a community level. My visual experience as a person with epilepsy is like having this really like double time, superimposed, fragmented reality when I have seizures sometimes. The visuals just like hit me, kind of like almost like hit me in the eyeballs. (laughs) It’s hard to explain, but I think that’s why I layered the tissue paper so much and also had this violent aspect of tearing it. I think that I wanna continue working with transgender and queer people on, like, community healing projects. I think that having that extra money just really invigorated the project, like, I wouldn’t have been able to get a spinning wheel or like the batting for the quilts or a quilting frame, things that are really important that I could have done the project without but it would have been a lot harder I think. My epilepsy as well, it’s kind of like this repetition of like the seizing and the convulsing and how that can actually be calming I think. There’s a lot of ableism out there that looks at disability like it’s undesirable or like it’s kind of like a life experience that isn’t worthwhile or kind of like should be bred out of people. But I don’t experience it that way at all, I wouldn’t give it up. (laughs) Like art and social change for me, kind of, lifts up those voices that are routinely suppressed or ignored or shut down and it gives them space in the world (laughs).

©2010 FWD/Forward. All Rights Reserved.

Representation is not mandated or guaranteed for people undergoing immigration proceedings:

Some were able to hire lawyers, others received pro bono representation – but there is no automatic right to court-appointed counsel, and most were not represented, the report said. (source)

I know I couldn’t represent myself in immigration proceedings and have a fighting chance at winning, personally, and I have a lot less working against me than many immigration detainees do. The fact that counsel is not appointed for people who may be navigating an unfamiliar legal system in a language they may not understand is, to be blunt, a horrific miscarriage of justice.

The ACLU concludes its summary of the situation with this rather damning commentary:

Due process is part of judicial integrity. It’s a basic principle that this country has decided to prioritize. It’s one of our greatest exports — we send people all over the world to talk about rule of law and how to reform judicial systems but we’re not doing it here in our fastest growing judicial system [the immigration courts].

Not every non-citizen with a mental disability is entitled to remain in the United States; but everyone is entitled to a fair hearing and a chance to defend his or her rights. If the US government is going to detain and deport individuals with mental disabilities, it must do so in a way that respects their human rights, honors US human rights commitments, and ensures fair and accurate court decisions.

The circumstances and situations documented in this study, incorporating interviews with 104 people, are something that the United States should be deeply ashamed of. The justice system in the United States is often touted as a paragon of equal access and fairness; we are told that everyone has access to due process, to representation in court, to the right to understand legal proceedings. Yet, for disabled immigration detainees:

Deficiencies exist throughout the arrest, detention, removal, and deportation process, violating the human rights of affected individuals and offending both American and international standards of justice. The shortcomings include no right to appointed counsel; inflexible detention policies; lack of substantive or operative guidance for attorneys and judges as to how courts should achieve fair hearings for people with mental disabilities; and inadequately coordinated care and social services to aid detainees while in custody and upon release.

The report documents cases of people who did not understand what deportation meant and lacked the ability to comprehend deportation proceedings; one subject asked to be deported to New York, for example. Some interview subjects had intellectual disabilities or untreated mental illnesses that made it functionally impossible to understand what was happening, while others were in extreme emotional distress and had difficulty comprehending the proceedings, let alone communicating. At least two cases included US citizens wrongfully subjected to deportation proceedings. One North Carolina native had bipolar disorder, was unable to understand the case against him, and could not represent himself in court, so he was deported to Mexico. Another, a US citizen since childhood, would have been deported if it weren’t for the actions of an attorney with the Florida Immigrant Advocacy Centre.

The report urges Congress to require appointment of lawyers for all people with mental disabilities in immigration courts. It recommends mandatory training for immigration judges to recognize mental disabilities, and calls for repeal of a regulation allowing a mentally disabled detainee to be represented in court by the warden of the detention facility. (source)

This recommendation would certainly be a step in the right direction if it was followed. It’s clear that we have been subjecting disabled detainees to grave injustice, and it’s going to take a lot of work to remedy that. People with disabilities are also poorly served in the US court system in general, but attorneys at the ACLU point out that deportation proceedings are among the most complex legal matters people can encounter, with the fewest protections in place; if there’s any place where inability to understand court proceedings has high stakes, a deportation hearing is definitely high on the list.

“Owing to their mental disability, people may not be able to share their experience with the judge in a way that helps him understand that they have a mental condition or a valid claim,” says Deborah Fowler, Texas Appleseed’s legal director. “This is particularly true for asylum seekers who have suffered trauma or persecution in their home countries.” (source)

Another serious problem for people trapped in immigration detention is that it can be stressful, exacerbating mental health issues and causing emotional distress for people with intellectual disabilities. Being shuffled from facility to facility has documented ill health effects on nondisabled people, and those effects can be even worse for people with disabilities, especially when they are denied adequate care and treatment. Judges, uncertain about what to do with detainees who clearly do not understand the proceedings, can place cases in a form of legal limbo, leaving people adrift in the immigrant detention system for years.

If this report outrages you as much as it does me, I urge you to contact Congress to tell them that you would like to see this report followed up, and want to see Congress taking the concluding recommendations seriously. If you are in the US, your own Representative is the best bet for a contact and/or you can write your US Senators. If you are outside the United States, please consider contacting a member of the House Subcommittee on Immigration, Citizenship, Refugees, Border Security, and International Law or the Senate Subcomittee on Immigration, Refugees, and Border Security and explaining that while you are not in the United States, you are gravely concerned by this report and feel that it reflects poorly on the position of the US in international society (and anything else you care to add). You can also drop a line to President Barack Obama, should you feel so inclined.

©2010 FWD/Forward. All Rights Reserved.