Again

Hopefully because I make this post, I will be spured to actually begin this.

I really enjoy blogs. I enjoy reading blog posts and the discussion they inspire. There are so many great disability blogs around here. This (so far pathetic) blog could be a part of that! How can I turn that up?

There are so many things that I hope will be discussed here. But one thing I hope to do is talk about disability issues in Texas specifically. Texas' institutions (13 of them) need to be discussed more widely, especially in light of last year's (it's been that long??) Department of Justice report on conditions at the Lubbock State School.

I also hope to share and explore my more personal thoughts on disability. This is inspired mainly by something Kay said at The Gimp Parade and also by Dave's daily posts at Chewing the Fat.

Every single day Dave has good stores from disability ground zero. He inspires me to look for the disability in day to day life and to constantly question my attitudes.

On Blogging Against Disableism Day, Kay said something that really stuck with me:

So where are the self-reflective posts by nondisabled folks about ability, bodily privilege, fear of people with cognitive disabilities, or even angst about becoming impaired? Where is the recognition of participating in and privileging from an ableist culture? If that awareness of personal ableism exists, why doesn't any of it bleed into the comments on my blog or those of my disabled blogger friends except during explosive debates like the Ashley Treatment?

In the spirit of David's openness and in light of Kay's admonition I share a revelation I had.

I had mentioned my friend who sustained a brain injury. He is now at a residential rehabilition ceter. When I visit I often chat with my friend's roommate. He always wishes me safe travels. In saying goodbye to the roommate at the end of my most recent visit, it struck me. If I met this guy say a year earlier without his wheelchair, without speech difficulties, not in rehab, out on the street I would see a tall, bigger, slightly older Black male. He probably would not be eager to talk. I probably would be nervous if he was. We probably would not exchange pleasantries. His disability makes me "safe" and approachable to me.

Hello ableism. Hello racism.

Wheelchair Dancer often talks about the intersections of race and disability. Although I can't find the post, I seem to remember WCD wondering about disability "erasing" race. (My apologies if this isn't the case.) For example, while a person of color might otherwise be viewed suspiciously, when that person has a disability, suspicion often gives way to pity. Their race is overlooked.

Unfortunatly, I can testify, this is true.

Values

Paul Longmore has an oft-quoted argument on the values of the disability community. I had read it in Eli Clare's Exile and Pride and again this morning in Bodies in Commotion.

He explains these values as

Not self-sufficiency but self-determination,
Not independence but interdependence,
Not functional separateness but personal connection,
Not physical autonomy but human community.

Beautiful.

BADD part 2!

The weekend is here and I finally have time to go and read everyone else's Blogging Against Disablism Day posts.

I will share some of the highlights (for me, at least) and my reactions here.

Ruth at Wheelie Catholic says "It [disablism] can even happen when you’re alone, when you’ve internalized the oppression." This really struck me. When I think of disablism, it's easy to point to substandard medical care, mean jokes, no ramps. I need to remember it's also about times when, alone in my house, I feel somewhat relieved by my able body. I am ashamed to admit that. Disablism isn't always mean, it's also pitying, ignorant, and privileged.

The post that has had the most impact on me was from Blue. She says

So where are the self-reflective posts by nondisabled folks about ability, bodily privilege, fear of people with cognitive disabilities, or even angst about becoming impaired? Where is the recognition of participating in and privileging from an ableist culture?

When I read that, it was a piercing indictment. Those are things I planned on talking about when I started this blog. But it was easier to just blog about the injustices in "the world." Representations in the media. Other people's ableism.

In college I took a class called "Developmental Disabilities and Self-Advocacy." I didn't know how good it would be because it was an online class, but as it turned out, I loved it. One of the activities we had to do was to rank hypothetical disabled and non-disabled people (someone with autism, a Deaf person, a sex offender, etc) in the order that we would want to meet, want to have our children play with, and want to be. In writing about this I said

"In choosing my disability I wanted to still have the capacity to communicate all of my feelings and needs, something I know I could do if I were Deaf, but not sure I could do if I had autism. I also would rather feel like I had “my own self.” I’m not sure how to explain this. But I wanted to have a clear idea of me."

Still today, I must admit, it is easier for me to talk about self-advocacy when we are talking about physical disabilities - although I understand it is equally necessary with cognitive disabilities. It's just with cognitive disabilities, I have more of a fear and less of an understanding. (Through reading a number of disability themed blogs, I have learned a lot.)

Now my close friend has a brain injury and a cognitive disability and I feel like a shitty person. After the accident I remember a conversation with another friend who said "It would really suck if he has to use a wheelchair." At that time we were in denial that the challenge would be bigger than walking. I was shocked by my friend's comment and thought (in self-rightousness) about how being in a wheelchair isn't the end of the world and that I wouldn't have a hard time dealing with disability. Now, 3 months later, I don't even want to think about how many times I have thought "If only you could talk. If only you could just communicate."

Disability and disablism have turned out to be more tricky than I thought. Soon I will put up a post I am working on about privilege and rehabilitation. I hope that others in the disability blogging community will read it and help

I haven't finished reading all the posts, so I might share something later. Although I am pretty exhausted by what I've read and pondered so far.

Ally and Friend

As a part of Blogging Against Disablism Day 2007 I want to talk about changes in this blog and in my life.

I started this blog as an ally, an activist. I had many things to say, to ask, to discuss about disability studies and rights and representations and policy. I had great intentions, as most bloggers do. I certainly did not run out of things to say, but at the end of last year my job got busier and the holiday season came quicker than I was ready for.

I was gearing back up to start again, meaning to talk about the DOJ report on the Lubbock State School (mentioned briefly here) and, of course, Ashley X. I even had some drafts going.

However, in the beginning of February, things changed. My close friend (let's call him C) sustained a severe traumatic brain injury. Suddenly disability was at once much more personal, and yet much more foreign.

On one hand, things that I once considered in theory were happening here and now. The brain damage was severe - the doctors said C would never wake up from his coma. If he did, he probably would be in a vegetative state for the rest of his life. End-of-life issues were now immediate issues. Even with hope and positive thinking, we didn't know if C would be able to move or communicate. Then what? What does it mean when people do not look or act or talk like us? Should "we" try to fix "them?"

On the other hand, I could not really think about disability issues and rights, something I am usually very passionate about. Living in the ICU, it's hard to imagine a "social model" of anything. I wanted to be able to use the things I knew about the world of disability - to have a framework to understand all of this (in case you are wondering, there is little understanding when it comes to brain injuries). But I couldn't seem to apply what I knew. Obviously I love C, regardless of ability, but I felt a crushing loss about his injury. Even though C was still here, I was grieving. Would he ever be the same C?

This is why I want to blog against ableism. I think ableism comes from ignorance and fear. In my experience, the acquisition of a disability has come with a lot of both. I hope we all can lessen these things in society. I hope by exploring and talking and learning we can provide a better framework for when disability becomes personal. There is not just a certain set of people that is affected by disability issues. It effects all of us. At any time anyone can become disabled, become a caregiver, a decision maker, a friend of someone with a disability.

Which is what I consider myself now, a friend. My blog title identifies me as an ally. Which used to mean someone who supports the rights and self-determination of people with disabilities without necessarily having a direct stake in the game (which is not to say I didn't have friends with disabilities). But now I also consider myself a friend. I have a more personal stake in this. Or, rather, I am more aware of my personal stake in these discussions.

(As a side note, C surprised all of the medical experts and woke up. Consciousness, movement, and communication are all continuing to improve. I am continuing to learn how to cope.)

With that, I'd like to reopen my blog.

"World News" Persons of the Year

The people of the year? People with disabilities!

I was watching ABC's World News Tonight when a teaser came on for a later segment about the "Persons of the Year." With the background of a marching band member in a wheelchair, Charles Gibson said something along the lines of "these people don't know what disabled is, or at least they don't want to know."

Unfortunately, I was not able to watch the segment, but I did find the story online.

'I Hear 'Disabled' ... It Makes Me Kind of Mad'

Dec. 29, 2006 — "World News" profiled a range of individuals during 2006 who are finding ways to benefit others in the United States and abroad. We caught up with a few of those featured and have these updates as they are named "Persons of the Year."

The persons are (drum roll, please) Thomas Ellenson, Anthony Robles, and Patrick Henry Hughes, all men with a disability.

From what I understand:

Thomas Ellenson: Has cerebral palsy, became frustrated with communication device. Dad invented a new one, named "Tango." It is now on the market "unlocking the thoughts and feelings of so many."

Anthony Robles: Born with one leg, became High school sports star. An undefeated wrestling season that got him a full scholarship to Arizona State. Doesn't like the word "disabled" because he can do anything he sets his mind to. As he says, "Now people come up to me and say I'm an inspiration."

Patrick Henry Hughes: Has never been able to walk or see. He plays the trumpet in the of Louisville marching band. His father goes to all the rehearsals and learns the routines so he can wheel Patrick through the show while Patrick plays the music. Dad also works the overnight shift at UPS so he can be his son's eyes in class. Patrick made almost all As in his first semester.


Thoughts/questions:

Why did these guys "win" jointly? They were not in a joint effort to save (insert cause here). As far as I know, they don't know each other. What was so amazing about them? I don't know what they have done to "benefit others in the US and abroad." The "good deeds" seem to come more from Mr. Ellenson's and Mr. Hughes' fathers working to make the world more accesible. As far as the honorees themselves go, it seems their amazing deed is being BOTH disabled AND successful. The problem is that it’s damaging to treat this as a rare occurrence. Their service to the world? Inspirational stories of triumph over tragedy. It seems rather "supercrip"y.

Why wasn't Mr. Ellenson quoted in the story. The article tells us he is "very bright" and he obviously has an amazing communication device. Why do his parents speak about/for him?

I don't feel good about the intro that said something about how the honorees "don't know what disabled is, or at least they don't want to know." That implies ignorance as well as shame about disabilities. I feel like it's like saying, "Yes, sadly, these people are disabled. But they are so happy, they don't even notice. However, sometimes, they have to recognize they are, in fact, broken. But even then, they refuse to accept it." Also, the quote implies the terrible thing - the one that is holding them back, the one to be overcome - is disability, not society's ablism.

Furthermore, does the University of Louisville not have a Disabilities Office of sorts that coordinates services and helps make classes accessible to all students? It seems odd that the task falls to Mr. Hughes' father, who, if his son had better services, could have a better work schedule?

Finally, just because you cannot communicate with someone else doesn't mean that their thoughts and feelings are tragically locked inside themselves. Communication goes 2 ways. Maybe it's not that they can't express themselves. Maybe it's that you can't understand. This isn't to say that I disapprove of speech/communication devices. My issue is how the story seems to put all the inability on the person with the disability.

Whew. That's all for now. Up next? Disability in theater!

Grey's Anatomy

Grey's Anatomy is one of my favorite shows but lately it's been getting me down. I'm sick of the Christina/Burke story line.

A quick catch up for non-watchers: Burke is a surgeon whose hand was injured in a shooting. After surgery on it things seemed ok, but it turned out he has tremors sometimes. He is reluctant to share this at first. Then his girlfriend Christina finds out. They then work together to hide these tremors from the hospital. I feel Christina really pushed Burke to hide this. She really loves his talent and ability. Anyways, Christina goes into all the surgeries with Burke and takes over whenever he can't do the procedure.

So for the past 4 episodes, they go through great lengths to hide Burke's disability. It's seen as the most shameful thing possible. Eventually people start finding out and Christina gets worried and tells on Burke. It's dramatic/sad and Burke has to stop operating. People are disappointed that they hid stuff but moreso that Burke is disabled.

This week the head surgeon told him to "fix it." Burke says he doesn't want another surgery. Head guy says that if he didn't get his hand cured, he would be a disappointment to himself. There's also comments about the "million dollar hands" or somesuch. At the end of the episode Burke chooses to get his shoulder looked at again.

Throughout all of this, no one ever says "we love you even if you can't be a surgeon" or "there's more to you than hands or nerves" or "isn't it funny that we put so much faith and admiration in our bodies?"

Ho hum.

Babel

This weekend I saw the movie Babel. Spoiler Alert: If you don't want to know anything about it, stop reading!!

If you haven't heard about it, it follows the interrelated stories of various families in different countries. They are separated by misunderstandings - barriers of language and culture. Yet they all face the same feelings of love and grief. Reviews tend to compare it to last year's "Crash." They also tend to refer to a character as "a deaf-mute teenager."

The movie itself was pretty good. It was kinda long and I wished I had waited to rent a DVD of it, but I wasn't displeased during the showing. Plus, it brings up interesting issues of disability representation and language.

Part of the movie follows Chieko, a Deaf girl in Japan. She is very rebellious and sexual.

Many reviews seem to think she's hypersexual and frustrated because she is Deaf. While she does get upset at the way a group of hearing people mock her and her Deaf teammates ("They look at us like we're monsters"), we find in the movie that there are other reasons for her discontent. That does not stop many reviewers and probably many movie-goers from thinking her deafness, at least in part, causes her behavior.

"the young deaf Chieko, rebelling because of her handicap" -indieWIRE
"a deaf-mute teenage girl named Chieko batters against the wall of her isolation" -Boston Globe
"a deaf-mute Japanese teenager who's struggling to adjust to her handicap" -Seattle Post Intelligencer

etc. etc.

Also, most of the reviews I read refer to Chieko as "deaf-mute." In the film, she and her friends refer to themselves as "deaf-mute" (at least in translated subtitles). However, that term remains an offensive one, at least here in America. I wonder if the reviewers knew this and decided to stick with "deaf-mute" because it is used in the movie. Is it an accepted term in Japan? If the word "Negro" was used in a movie to refer to a character of African origin, would reviewers use the same word to refer to the character in their review? Or would they understand that the word is now considered to be a slur and a means of oppression, and use another term?

Moving on. In the movie, Chieko goes out with friends dancing at some sort of wild/crazy/sweaty/colorful/loud/busy disco place. (Ps. why aren't dance clubs as fun in real life as they are in the movies?) These scenes are full of flashy colors and loud noises. Then the sound cuts out, leaving the audiences eyes swimming and ears burning with silence. Slate explains it as: "a bravura nightclub sequence in which we alternate between the pulsing music of the strobe-lit dance floor and the silence of Chieko's inner experience."

Ohhh. That is what it must be like to be deaf-mute-handicapped-deformed. Because she cannot hear, she can never experience the joy of her peers. She is trapped in a quiet world, lonely to the core. No wonder she does not behave. Pity her, for you would act out, too, if you had to endure such a tragedy.

So obviously, it bothered me a bit. The first time this technique was used in the movie, I didn't mind. It was a reminder that not everyone experiences the world the same way, and I didn't perceive it as negative. But then they did it over and over while Chieko grew sadder and more isolated, and then left the club. The Denver Post describes it as "a powerful gesture that elicits your physical empathy before sending you away from the lonesome teen to enjoy the waves of sound."

For the record, most Deaf people understand sound very well. They live in a world with sounds and with people who value these sounds greatly. It is a stereotype that Deaf people "live in a world of silence." Many can appreciate some sounds at certain pitches/volumes. Sometimes they can feel the vibrations sounds cause. They certainly see the effects of sound (for example, hearing people asking them not to laugh or make other sounds because it sounds like animals).

Apart from all of this, I thought it was fun to see Japanese Sign Language in a movie. However the Boston Globe isn't sure JSL counts as a true language, saying, "the Language -- and there are six of them in "Babel" if you count the signing -- is the governing metaphor for our fall from grace..."

Lovely.

Anyways, I wondered, is the actress who played Chieko Deaf? Did this movie help open the doors to a minority group marginalized in employment?

No. Of course not. The actress, Rinko Kikuchi, is hearing. I don't have anything against hearing people, I am one myself. But I see this as a kind of blackface. There are many deaf actors and actresses out there. However, the filmmakers chose to use a hearing actress pretending to be Deaf (and go on to include some hurtful stereotypes about Deaf people). The director, Alejandro González Iñárritu explains "I was obsessed with hiring a real deaf-mute, but they are not easy to find." Which I don't believe.

Variety sheds more light on this, saying, "Each time she was invited back, Kikuchi noticed more of her competition was actually deaf. So she took it upon herself to learn sign language."

I think it's cool that this actress learned JSL because now she can communicate with a broader group of people. However, just because you learn sign language doesn't mean you are Deaf or you understand Deaf culture, or that you should pretend to be Deaf and a part of Deaf culture. Maybe I am taking this too far, but I really think in doing this role Kikuchi is using her privilege to oppress others. There obviously were talented actresses who were Deaf who were being called back to auditions. But instead a hearing girl, comes in, learns JSL, makes tons on money pretending to be Deaf, and goes back to her hearing life.

So. A few ableist stereotypes and disrespectful casting in a movie expose many ableist attitudes among movie reviews who are probably representative of the wider public. The most frustrating part is how everyone who talks about this movie goes on and on about how it's about bridging the gaps of language and exploring cultural diversity, when in reality the movie falls short in recognizing Deaf culture and the way hearing people oppress it.