Audiences and "Disability Ghettos"

I am always amazed that we have an audience. Performing at home is one thing; we've been there for years -- had time to build a base, form a community. Performing in a different town, in a different place is makes me wonder: who wants to see us perform? Who funds a dance company like ours? Who brings us to your town and why?

These questions haunt me as I read the following article: an interview of crutchmaster Bill Shannon about being a performer at the Paralympics. The title is, I think, intended as one of those journalistic plays on words:"Performance artist resists 'disabled ghetto':Disability not a crutch for skateboarding dancer," but to me the conjunction of these ideas is meaningful.

Shannon wants to talk about how his art and creativity are not tied to his disability. He wants to reinforce the idea that he is not there to fill the disability slot on any program. He is an artist. A performer. And he wants to be -- no, should be -- taken seriously as such. This is a really hard project. When funding often comes from disability related sources, you get promoted as a "disabled" artist. When disability is the first thing your audience sees, you are interpreted as a disabled artist. Disability has a way of making itself felt. And there's not much you can do about it.

That said, no one should be going around -- journalist or performer (it's not clear whose phrase it is...the quotes seem to suggest it belongs to Shannon) -- talking about disability ghettos.

GHETTOS? Seriously? In this day and age, people still use that word? What does it mean to "racialize" disability in this way -- for communities of colour, disability communities, and communities of disability and colour? Is "ghetto" really the only way people can think of to describe the marginalization of people with disability?

To use that word is to simultaneously reinvoke and reinforce a negative understanding about the lives and cultures of people of colour (and African Americans in particular). To use that word is to casually invoke a history of prejudice and hate to signal a second history of prejudice and hate. And that doesn't work. If we are to survive and support each other AND (most importantly) have memberships in both communities, we just can't go around saying stuff like that about each other. As a person of colour, this makes me question the relationship of mainstream (i.e. white) disability community to the community of disabled people of colour. It make me question my place.

People! If there is to be equality and justice in the world, we have to stop hurting each other. Only then can we work together to make a better world.

OK. Back to the question of audiences. Who comes to see us perform? The presenters we work with -- regardless of whether our funding has come from a disability related source -- seem to understand the appeal of the community to a broader audience. They do outreach to the disability community (if there is one locally -- weirdly, we often perform to absolutely no visibly disabled people). They also do outreach to the local arts and dance audience. With a little luck, our director is able to get a good message across about disability and dance to the media; she often does radio, tv, and press interviews. Sometimes, despite her best efforts, the "inspirational" "tragedy" "overcoming" story does make it to the article, but more often than not, she is able to cut most of that junk off.

People come to see us for a variety of reasons. I don't know who they are or why they come; I am just happy that they come. I do good work. My company does good work. I feel happy and fulfilled as an artist and performer. I don't think it is ever going to be possible to separate what we do from the disability angle. Disability makes what we/I do possible. Disability is there upfront and central; no one can escape or avoid its presence. It's just not the point of what we/I do.

First Day Thoughts

We're here. And wow.

The travel day was harder than I expected (red-eye and a 2-3 hour long drive), but I was able to get to the pool (warm water and hot spa) and stretch. All things considered, I woke up feeling pretty good. Traveling with (AB) dancers is so weird. You see them next to other people and they look small, but ordinary. If you watch for a while, however, flashes of beauty break out of their bodies as they lift suitcases, sit on the floor, get up and stretch, and then suddenly their dancerly-ness disappears; they could pass as non-dancers again. It's different traveling with disabled dancers. Here, I always think that people just don't get it. There's no expectation of a norm for us; everything we do is somehow extraordinary. I know that my colleagues can do more than anyone; I see that in every push or every small arm movement. But in the public spaces of airports (and possibly in public spaces everywhere), there's no hiding, no passing for normal.

Today's schedule is split up. Class in the morning; class in the early evening, and rehearsal with the community cast at night. In between, I went to the pool to swim and to do my PT stuffs. I feel good (if a little tired). The setup here is pretty cool; the studios are nice, and we have free access to the pools and training facilities. Totally, nice. Yesterday, there were auditions for the community cast, and today, we meet our new performers and rehearse with them.

The work ahead is plenty, but the dance culture here is strong. So many beautiful movers; I even overheard a conversation on the bus about dance. Two women were discussing how to manage a lift; pelvis to shoulder, distribute weight on both sides of the shoulder .... It's nice to be in a place where dancing seems to be part of the fabric of everyday life.

OK. Off to the next thing. Going to find clean clothes and start again.

Packing.

This qualifies as an entry in Tour Diaries.

I am writing because I am frozen in horror; I have been all week. Readers of the last West Coast tour blog entries will probably remember how much packing stressed me out. It's worse this year. Last time, all I had to worry about was forgetting stuff. This time, I have that to worry about AND the fact that USAirways charges $100 for your third bag. JetBlue charges $75. OK. Rationally, their policies also say that you can have medical equipment and required medical devices. As long as you don't put anything else that is regular luggage in the same bag, you should be fine; I hope that that is the case because I have stuff. Which airport am I leaving from again?


So, at the risk of boring you, here's a check list. I mean, what do dancers take on tour?

Medical Bag:

Heating pad
Tennis balls
Therabands
4" tiny ball
Ice machine, hoses and ice cuffs.

Wheel Bag:

Rear wheels
Inner tubes
Bicycle pump
Tool kit

YAY Sportaid for making the wheelbag possible. This is a different move for me; usually, I take my dance chair and my regular chair. But my regular chair is trashed and at the menders.... Soooo. Dance chair and rear wheels it is.

Regular Bag:

Costumes
Costume undergarments
Make up -- makeup brushes, makeup remover
Toiletries -- hair, face, body
Rehearsal clothes
Regular clothes
Snacks
Tea bags
Coffee
Chocolate Espresso Beans
Something. Anything that reminds me that I am a human being.

Carry On Bag:

Coffee press mug
Water bottle
Computer -- charger, DVD drive.
Kindle -- charger
Phone -- can use kindle charger
medication --- OMG. Hope I have enough/haven't forgotten anything.
Gloves
Sunglasses
Earphones

I know which pieces we are performing. But in the stress of packing, I seem to need to go through our whole rep and remind myself that we haven't done this piece for 3 years -- I won't need the costume. And then, there's the fact that the costumes all have pieces -- headbands, bras. Do I have all the bits?

Our schedule quite clearly says that we have a finite number of rehearsals, master classes, and workshops. But how cold will the studio be? Will I need tights, legwarmers, scarves AND a sweater? Every day? Or just pack 2 or 3 in the hope that there will be some double duty?

Regular clothes. Can't wander around looking like an extra from FAME! Some clothes could, potentially do double duty. Which ones? Why? Something that makes me feel comfy? Something to sleep in; we share rooms -- I always forget this one. Will I be under/over dressed?

Toiletries. So many potions and lotions. But I don't want to look like a frizz machine; I like the way my shampoo smells. I need a comb. I did pack toothpaste, face moisturizer, face cleaner, body lotion, makeup remover, make up.

We always make a run to the grocery store when we get there, but somehow, things are always easier to buy at home. And often cheaper, too. Last year, I packed a corkscrew; this year, not drinking as much. I could buy a box of emergen-c, but I got a good deal on this pack. Fruit and perishables should probably be bought there, but I did pack some carrots, chocolate gluten-free granola, energy bars (which I could probably left at home), and some chocolate espresso beans. And some of my fave coffee and tea bags.

I have the schedule. It's online, too. I have my ticket. I don't have to dig the cat out of my down jacket -- it just looks wet and relatively warm-ish. A light coat will do. I have my gloves. I have my earphones. My sunglasses are at the ready.

My ride is due here in 40 minutes. Time to finish the last of the packing, double check.

Wallet, Cellphone, ID -- print the boarding pass --

Gosh. I hope it's OK.

Unexpected Break

Sorry about that. Took an unexpected break. Life got a little overwhelming.

I've been taking classes in New York -- anatomy, kinesiology, a new modern/release technique, more rehab based gyrokinesis, and Bartenieff Fundamentals. I'm excited about all of this, of course, but will be posting first, I think, on the Bartenieff stuff because of the relationship of dance and disability in her work. (That's another post). I've travelled a long way personally and professionally.

First off though. Improvement. I have made progress; it's actually quite scary. It's not that I didn't think I would recover from the hip surgery -- though that in itself has been a long road -- it's that the work I did for that rehab has paid off in other places. I am doing better than expected. And I feel quite pleased, shocked, and a little scared.

West Coast is about to dance up and down the East Coast on tour. We're doing a series of workshops, masterclasses, etc. I'm keyed up and ready. I'm also stressed about the packing. It's amazing what you can find to fixate on. Just take my dance chair? Or just a second set of wheels? Or take both chairs.... How many pairs of shoes? What about access to good coffee? My press mug? Some of my favourite ground beans? What about food? Medical stuff? What if I don't pack enough clothing? What if I forget/lose/break part of my costume....

Nerves. More later. But I'm back.

Thinking Beyond The Label? Not Quite

And speaking of work, ...

In the airport the other day, I was delighted to see in my peripheral vision a woman in a wheelchair in an advert. I recognized her from a dance workshop we had both attended years ago, and I realized that I had caught the national tv ad for thinkbeyondthelabel.com -- a campaign to "evolve the workforce" by hiring people with disabilities. I've seen "thumbs ups" in my facebook and twitter streams, but as I watched it, I became increasingly anxious. The trouble with airports is that you can't think, so it's taken me a while -- and several conversations with Wizard -- to get this straight in my head.

The advertising campaign is the first nation-wide campaign about employment for PWD. It's on the television and the radio; there's a website. I have yet to see a paper version. It's not working for me. It's not just the slogan, "Evolve Your Workplace," (eek -- misuse! infelicities!), it's the way disability is presented.

Activists have spent a long time trying to educate people about the dangers of assuming everyone is a "little bit disabled." (Interrupt for a weird thought -- can you be a little bit black? a little bit gay?) Your small medical condition does not necessarily rise to the level of a disabling impairment. Admittedly, the dividing line is hard to define, but not everyone's back ache is a disability (though of course back ache can be disabling).

Helping people understand that difference is important -- particularly in the workplace. Knowing and appreciating that difference helps work colleagues understand accommodations (especially when those accommodations concern invisible impairments). Having your colleagues know and understand that difference can be critical to their support and to your success. A national campaign that equates disability with poor fashion sense, a tendency to talk loudly on the phone, etc., etc. undoes years of consciousness-raising.

And then, there's the things with which disability is equated: poor fashion sense, loud talking on phone, inefficacy with a copier, bad coffeemaking skills, etc. REALLY? SERIOUSLY?

On the literal face of it, none of these things can possibly be equated with disability. The campaign is more insidious -- they probably thought it was "clever" -- than that. None of these things are meant to be disabilities per se; they are meant to be obstructions to effective performance in the world of corporate culture. In corporate world, poor fashion sense, rightly or wrongly, can be a disadvantage; they can mark someone as being less than the ideal corporate human being. The idea behind the campaign is, I assume, that in the world of corporate culture, certain things matter: socially appropriate behaviour is one of them -- coffee making skills, the clothes that are seen to be professional and appropriate, skills with requisite technology -- phones and copiers. Disability, they want to say, does not prevent anyone from participating in corporate culture. A disabled person can work and be an effective part of the team. Even though she may have an "impairment' in some other realm of corporate expectation -- an employee's disability should not stop her from working.

The message is good, right?

But look at how they get there. The campaign, run by Health and Disability Advocates, is supposed to be funny; I get that. But what it does with disability strikes at years' of disability rights awareness and education. As the Wizard put it, it makes disability "icky." When you go to the Think Beyond The Label site, for example, there are a lot of resources and education/outreach materials. That's good. There's a lot of data. That's good. There's also an opportunity to send someone a postcard. Yes, you can choose a label to send a friend: "rhythm-impaired," "jargon prone," "pattern deficient" are some of your options (you are required to login for more) And then, there's a mean little bit of "humorous text." For the rhythm-impaired: "what exactly do you call that move?"

Facilitating this piece of social meanness in the name of furthering disability rights is unacceptable. Why point out the weaknesses/make fun of the idiosyncrasies of one to support the rights of another. Even in the name of humour, this seems to me to be wrong.

What if it works?

If the campaign is successful, it seems to me that we in the disability rights movement have lost a very big battle. We would need to consider how and why our strategies have failed and rethink our future educational strategies. It's not about humour; it's about how we are known in the world. If we have failed, we need to think again, because I can't see this as the way to go.

Do You Work?

I had to go to a new doctor for something I thought was clearly unrelated to my disability, but of course it came up; I was pissy. The doctor, however, persisted; legitimately, as it turns out. These new symptoms could, for him and for an obscure part of a medical textbook, clearly be part of all the other junk. I relented and felt bad about my attitude.

But then he asked if I worked.

Whether or not one is employed is a standard part of the social profile that new doctors seem to want to know -- particularly in my case, since I don't have a clear single diagnosis. "Work" for a doctor seems to serve as a bright line between genuinely disabled and neurotic, psychosomatizer. For far too many within the medical system, work serves as a talisman between a healthy coper and a drag on the medical and welfare systems.

Again, I find myself turning to Sunny Taylor's essay in the Monthly Review. Here's the first paragraph:

I have a confession to make: I do not work. I am on SSI.¹ I have very little work value (if any), and I am a drain on our country’s welfare system. I have another confession to make: I do not think this is wrong, and to be honest, I am very happy not working. Instead I spend the majority of my time doing the activity I find the most rewarding and valuable, painting.

Truly. It's now so common to conflate employment and identity at a variety of class and education levels, so common that employment itself has become a marker of social worth. And in this particular economy, employment numbers (never the people, just the fear of the numbers) have become political talismans that the two parties sling at each other in order to try and maintain the illusion that they have a stranglehold on power.

Employment is such a controlling social and moral force. Work discourse frames the discussion of how, when, and even if women have children, their value as working parents, and how they might live/work afterwards. Work discourse controls who, some wild popular imaginations, is a productive citizen and who a "welfare queen." In accident reviews and, for example, in the post-911 insurance discussions, work discourse can help assign a monetary value to some lives..... You get the picture.

And if you are a disabled person trying to work, trying to get a job, trying to retain a job, you know how difficult things can be.

For a medical professional to use work as a shorthand for disability legitimacy and personal credibility seems to fully miss the point. My answer complicates the question even further. Yes, I have a job. Some weeks, I can work up to 30 hours; some weeks I work only 3-4. But I most definitely work. And then, there's all the preparatory stuff I do to keep my body in shape and all the recovery stuff I do to undo the strain of dance. I don't think of it as "work" but a fair amount of labour is definitely involved.

"Yes," I say, "I work as a dancer for a physically integrated dance company." I then have to explain what that is and what I do. Oh, yes. The situation is complicated -- my disability is my job. What does the system do with that? I am obviously capable of focusing on something other than my own dramas and of contributing useful work to the world. Yet at the same time, it could also be that I have managed to expand my neurosis to such an extent that it defines my world -- and I get paid for it.

There's a pause. We look each other in the eye. It's a smackdown in all the usual critical ways -- white man to black woman. Non-disabled to Disabled. There's a long pause.

"In your case,....." he says, deciding to go for it. He lists some of the interactions between conditions, some interesting studies, and some treatment/followup options.

I smile, thank him, shake his hand, and leave. The sensation of having just narrowly jumped some invisible hoop pervades me. Work for better or worse, work defines who you are. What if I had been unable to work? Would he have denied me care? Been less thorough in his discussion? Or could he have been even more thorough? Were there options he forebore from mentioning because he didn't fully believe?

Work. I have rehearsal today. It's not work. It's how I live and yes, it's who I am.