The Art of the Bathroom and Disability Events

I'm here for an event. A disability event. An event to which I RSVP'ed as soon as invitations went out. An event organized around disability and the arts. I would be attending in support of a powerful disability project. Then, less than six hours before it is due to begin, I get a phone call explaining that "x and y want to be perfectly clear with me that if I am to attend, the bathroom is inaccessible." The voice goes on to explain that she is being "very clear with me. People will help me if I want it," but I need to know that the building is totally accessible but the bathroom is not. She starts to say that I should let her know. Then, she changes her mind; I don't have to tell her whether or not I am coming.

The phone calls begin. Everyone wants me to know that they are really sorry. That they never would have chosen this as a location if they'd known. That there are strong men on hand who will help. No one wanted to exclude me.

1. This is at an event organized for a disability project.
   
2. This is at an event where a good number of organizers (and attendees) know me.
3. This is at an event where I have been in independent email correspondence with the hosts -- and mentioned in particular another event that I had hoped to attend (that they attended) but which was inaccessible -- weeks ago.
4. THIS IS AN EVENT ORGANIZED FOR A DISABILITY SPECIFIC PROJECT.

No one checked the bathroom.

I feel like the voice who called me is making it my problem. She's embarrassed (as well she should be), but in her perfect clarity, she made it my problem. If I choose to come, I should know. And be prepared. And truly, she didn't mean it that way, but I don't think she handled the call well. Yes, I know; she had to call a stranger and say that the bathroom was inaccessible. She didn't understand what that would mean to me personally.

I feel really unwanted. (Yes, I know it's not personal). And also really bad, awkward, and out of place. If I go, people are going to be weird about it. If I don't go, people are going to think *I* am being weird about it.

It's an event at which food and drink will be served. If I had known days instead of hours before, I would have planned around it. You know. Taken one for principle and played one for team! I would have had fun at the party! But I've been drinking with abandon today, to make up for yesterday's long flight and day with basically nothing to drink. Add to that a post-surgery body; response and reflex time is a little different. I feel scared to go and not yet be able to trust my body. I feel really vulnerable to this new body and uncertain about its limits. And I feel really shy, awkward, and unwelcome. It's this last feeling combined with a certain feeling of cavalierness that's preventing me from putting on a pad and just going. The inaccessibility, the flight, the body, the drinking.... those I have no choice about. But I could just put on a pad and go. Except that I'm not going to; I'm going to use the time, as I had originally planned, to rest, nap, and recover.

So, yes. Or no. Anyway. I am not going.

I am not not going because they didn't plan; though in principle this should probably be my primary reasoning. These are mostly people I know, though; I want to be there to support them and their work. No. I am not going because I can't trust my body not to need to go for the time it would take to get there, be at the event, and get to a bathroom not at that event. I am not going because I am embarrassed to be there - incorrectly or not, it's how I feel. And it outweighs my desire to support the project. My closer friends will, I hope, understand.

Today

Sometimes, all you have is the blog equivalent of a facebook update. This would be one of those days.

GOOD NEWS: lifted movement restrictions on hip extension. Not so much on external rotation, but I am not rotating anywhere that thing is burned in so tight. So, next stage of PT.
GOOD NEWS: I am Kindle 2+ (HOORAY!) More later. Smile.
GOOD NEWS: The house has siding and windows. Makes a difference.

Bad news -- My laptop has a logic board error. Well, that makes sense, eh?
Bad news -- I'm deeply tired and my hip hurts.
Bad news -- The cat is still grieving and the bloodcurdling yowls are getting to me.
Bad news -- Not enough coffee. Might be why I am tired?

It's a long road, but today, I feel like I am making progress. All right. To bed. Less salubrious adventure this time. Cat. Ice cuffs. Heating pad.

My Docs

I'm about to [insert appropriate verb] away my docs. You have no idea how hard it is to say that.

I can't decide whether the right word is giving away (too battered, I think), getting rid of (there's no joy in it for me), throwing away (too painful), separating myself (WTF? addiction?), parting from (divorce?)...

In my closet is a pair of black doc martens. They were everything to me. I drooled over them as a teenager; I bought my first pair myself -- with money I earned working as a cashier at Sainsbury's and at a car parts shop. It took me over two years (summer job pay) to save enough money for them. I wore them -- with black tights and short skirts, with jeans, with leggings, with .... I wore them to university (grad and under), I wore them in my first job. I wore them when the disability stuff started. I wore them with the orthotics that stretched them out and ruined the inner sole mold. I stopped wearing them when I started to use a wheelchair. They hurt, and besides, I felt weak; I didn't think you could kick some shit from a chair.

They've sat in my closet unworn since 2002/3. I take them out occasionally and put them on to see if my feet again feel right in them. They don't. But I don't throw those boots away and nor do I buy a new pair to replace them. It wouldn't be two years or so of saving this time. I could just buy a pair of docs. But I don't.

The woman-girl who bought those shoes doesn't exist anymore. Buying something for its fashion worthiness instead of its function was one of my first strikes for freedom from the penny-pinching of my childhood. I sooooo wanted those shoes. And I bought them. It cost me. But I have them (still). The girl-woman who bought those shoes experimented with her sexuality, her body image, her lifestyles and values. She walked miles; she kicked ass; she travelled; she was gawky, gutsy, overweight, smart, scared, powerful, shy, insecure, and desirous of a meaningfilled place in this world.

Yeah, those boots were with me in the perilous transitions from teen to young professional. I made it, you know? And the literal and figurative weight of those boots (they are heavy) gave me confidence as I stomped my way to what I saw as the top.

If you've been around for a while, you might remember that I like shoes. I really like shoes. And my most recent take on them has been to treat them as ornaments. I wasn't going to be walking in them, so I was going to wear the most ridiculous, high-heeled, fancy, ugly, exceptional shoes I could find. When this started, I was willing to take some pain (the shape of my feet changed), but I was going to wear, goddammit, the pretty shoes that had never been mine.

Hip surgery, weirdly, has brought more changes -- now, I wear Uggs (jeez, yes, I have sunk *low*). But honestly, they are sooo comfortable and warm. They have a modicum of fashion status -- sort of, more if you live in LA??; they are flat, wide and loose in the box, rounded at the edges, and have that capacity for a high arch/high top of foot bit (way, technical, me). They are the ideal disability boot. There was a thread a while back on Feministe in which Jill wished the economy would kill Uggs. Oh, I know how to kill them. Simply inform the designers and brandmarketers that there is a substantial disability niche for the Ugg boot. That would turn them off. I don't think I will be buying the pale pink Ugg boot (or shoulder bag -- last year's?), but I will certainly be visiting the Soho store to get me some ugly goodness.

That pair of docs is one of the last few material artifacts of my pre-disability life. As I did less stomping and my walk became more a stumpy shuffle, those boots supported my feet. Eventually, though, I stopped wearing them. The orthotics (which didn't work) reshaped the inner part; the weight was too much; the boot didn't fit.... Now, however, I look at the uneven wear and tear on them, their misshapenness, and the other myriad signs of age; I can see that they served me well and that I -- and not they -- am to blame for their disuse.

I think now I can part with those boots because I know that that woman isn't coming back and that I don't need her to exist anymore. More to the point? I need the space in my closet.

Universal Design and Social Class

Allow me to express inarticulate incoherent screams of rage and, and, and ...I am disappointedly resigned to the repackaging of universal design as a upper middle class privilege that goes hand in hand with the desire to age in place.

This is what I think happened. Somehow or other, the products and designs of the early universal designers were ugly. Unbelievably ugly -- because they focused on functionality. This was important because functionality was missing. And the disabled people involved in the early years of universal design recognized that for access to be widespread, the solutions had to be functional across a wide range of bodies, cheap to build and install, and durable. Form had to meet function; there were issues of justice and principle at stake.

From the outside, however, these initial solutions looked/look very different. If you didn't/don't have access to the thinking, an awareness of the history, and/or a commitment to the principle, the solutions could look very different. They could look UGLY. And, I would argue, that principles aside, these days, regardless of your commitment to disability rights, there is still an aesthetic argument to be made that the early solutions were the medical model of design and style.

In the early years, people were still figuring out the hows -- the how could we make this happen, how to address that disability? What could they do that the disabled person, an institution, and/or a business could afford? What were the viable options? The result: UGLY, but functional (mostly, sort of) design. And really, it didn't matter. People needed to be focused on environmental barriers and bodily needs; they needed to create low budget but effective solutions. Their solutions were cost effective, but ugly.

This was because, on the one hand, disability was seen as a niche market; few takers, not much need, no real understanding of disabled people as needing much more than functionality in their functional environments. It is easy to see how a kind of slippery slope came about. The clients were disabled; they should be lucky they have access; never mind about ugly access. Besides, even given the rules and regulations -- more accurately guidelines -- of the ADA and equivalent legislation -- everyone understands that, for the most part, each solution is going to be different.

Personalized, individual solutions were necessary, yes; standards were available, yes; but somehow the beauty got left behind. Disabled people didn't want aesthetics to limit access. No use having a pretty house if you can't get in the door, pee, cook .... There's no point in having beauty if your local businesses state they can't afford the design solution.


I understand how and why it happened. That doesn't excuse what happened next/is happening now. The baby boomers are retiring. This is a demographic segment that has come to be marketed as a privileged group. According to marketing experts, advertising groups, housing builders, vacation industry types, etc. etc., this segment expects (I should say up until 4 months ago) to retire in a wealthy-ish manner. They were presented to us and to themselves -- even though it wasn't true for everyone -- as perhaps the most wealthy group of retirees ever. They are, supposedly, a group that has "earned" and come to expect the best, the luxury, the privilege... And now this group of baby boomers has suddenly discovered that not even they can avoid aging. As they look around themselves at the products and environments for aging, they have discovered a distasteful world in which the threat of disability is around every corner.

"Aging in Place" is not just a recent buzzword/catch-phrase; it is a movement with its own national council. It is a philosophy of products and lifestyle that will enable senior citizens to live independently for as long as they can. It is a promise of freedom, of maintained lifestyle, of independence, value, and, cynically, it is a rich vein for entrepreneurs. It is NOT, however, anything to do with disability per se. Yes, I know. It looks like a duck, quacks like a duck, and eats duck food, but it turns out to be a swan. As marketed to retirees, the aging in place movement slides gracefully over disability, disability rights, the independent living movement, the history and the politics, the sacrifice and the courage. It stands upon all of this work without acknowledging the debt and moves to this:

Today's New York Times sports 2 articles on universal design. The first is an aging in place thing -- baby boomers find UD ugly, want highend UD to go with their Gaggenau kitchen appliances (your basic electric cooktop starts at around 3K: *that* kind of high end. The one in the article is a cheerful $5, 600 (Gaggenau donated many products), but you could buy a cheaper one for $680... but really who'd want that?) and color changing aroma therapy bathtubs. No one wants to age in a place that looks like a rehab institution.

Oh, true! But one could ask also why rehab institutions are ugly. Could it possibly be because the larger markets have neglected universal design as a viable aesthetic choice, because architects and designers see only the functional? Because the money and will have not been there to design beautiful functionality? Because the humanity has not been there to understand the value of beauty? Because there is an implicit understanding that beauty is the province of those who can afford it? Michael Graves alone is not enough to change the world.

The second piece is about universal design (versus aging in place): a French wheelchair user brings US-based universal design principles back to his home outside Paris. It goes on to talk about all the things M. Prodel has done for his place. Some of them are relatively small -- height of outlets and switches; others are more substantial -- an elevator and 20ft pool in a heated spa room. Throughout, the article stresses relative unfamiliarity of universal design principles in France, the stylish nature of M. Prodel's house (modern and minimalist), the rarity of such projects, and the pressures on M. Prodel to help/advise others: the "my x is in a wheelchair, too!" syndrome (my phrasing).

Reading between the lines, I see a real difference here in architectural clients. Nowhere is the cost of M. Prodel's project splashed about -- in fact, reading between the lines, I get the impression that though M. Prodel is obviously wealthy enough to buy and renovate the place, he is not doing a "high end" splashy renovation where the cost and high endedness are the message: UD is not scrubby. Rather, the project and any possible "luxuries", 4 years in the making so far, seem to be tailored to his needs. If M. Prodel spends 600K USD or more, it won't be because he felt the need to show what he could afford; it will be because the UD movement has to move beyond functionality and because designers and architects have to understand that beauty without function is no longer a winning proposition for ANY segment of the market. M. Prodel has sophisticated tastes and complicated needs; his house reflects that.

I have some investment in this whole issue. I know first hand that an accessible renovation is pricey. Very pricey. I know what these things cost, and I know that part of the cost is simply from the fact that it will be years, probably, before my contractor builds and installs stuff like this and that it will be years, probably, before Mr. A is asked to design stuff like what I want. Part of my point is that I should not have had to ask him to design ex nihilo; it should have been available, and it should have been beautiful.

When so many disabled people are unable to get suitable housing (by whatever means), it seems insensitive at the very least to trumpet high end semi accessible (for this is not currently accessible for the most part -- the 600K only means that it can be made wheelchair accessible should the need arise) housing as a fashion statement/buzzword. Where is the justice in that? When the lucky baby boomers who can afford it retire to their purple tubs, who will offer non-institutional residences to those whose bank balances are smaller or to those who fought for justice and equal access, who fought to bring universal design to the forefront and received no payment for it?

Sex and Disability: Possibly NSFW Depending On Where You W

I've been waiting until VD (no, not *that* vd) was over to talk about sex and disability -- don't want to confuse love and sex necessarily. And, besides, it sometimes takes a while to get up the balls to do it (why don't we often say have the tits -- actually, my bff and I in college did say that, but it was certainly never standard usage).

First, get your juices going with some simply fantastic photography by David Steinberg. I hadn't heard about this project until recently; I don't even know whether the book actually came out -- I couldn't find it obviously on the web. Mr. Steinberg describes his work:

Since 2000, I have been taking photos of disabled people having sex. There are almost no photographic images in public circulation that show disabled people being sexy, let alone sexual, in any kind of genuine, non-fetishized way. It is my hope to begin to fill this void by producing images that demonstrate the simple fact that people with disabilities are just as richly, emotionally, intimately, lovingly, passionately, and playfully sexual with their partners as everyone else.

The web teaser shows 6 white couples doing the heterosexual nasty in a variety of different ways -- up close and deeply personal. It is as intimate a look at someone else's sex life as you could ever want. These aren't super bodies; they are just body bodies -- different ages, different disabilities making love. Hey, David Steinberg! What about some queerness or crips of colour or queer crips of colour? AND, btw -- not directed at Mr. Steinberg -- I am tired of "as anyone else" work. What if people were to explore disability, cripdom ... whatever you call it ... as a thing in and of itself -- without reference to the "norm." Oh -- going out on a limb here as a kind of thought/fantasy exercise -- what would it mean to fetishize disability in a disability positive and sex positive way (i.e. not the way it usually shows up on teh internetz)?

Time for some more juice stimulation: This links to the work of Sonja and Michael Inselman. The project is nude photography of a bunch of paralympic athletics; the pictures are for a 2006 calendar. The photography and bodies are absolutely stunning. In fact, they are perfect -- perhaps even too perfect. Not a lump of cellulite, fold of fat. Yeah, they are athletes, but would it hurt to make such a high art calendar of a wider range of bodies? (One friend comments ... Why are they mostly amputees? Is there a comment to be made here?) For the moment though, I offer the link as a way of looking at sexy, sexy bodies.

Longer term readers of this blog might remember this discussion of sex as the Wizard and I see (and have) it. I have to say that at this point, hip surgery has changed the calculus immensely; I'd underestimated the role hips play in my pleasure and in our sex together. Let me put it this way. The man may or may not be as stiff as a board -- overshare -- but he is certainly as inflexible as one. We've been relying on my flexibility as a way of compensating for his narrow range of motion and for my inability to bear weight through my legs and on my right shoulder. Now, however, I have significant movement restrictions and he is STILL inflexible (how'd that happen?)

And, getting close to the truth here, hips play a big part in how I move and respond to all kinds of sexual stimulation. It's not just a case of can I open my legs or not - mostly not or at least not beyond 20 degrees of rotation. I can't arch or bend either. I am really pretty pissed off about this. Granted my hip is much more stable and pain free; true there are any number of links that say you can have sex starting at about now. But seriously... I have no idea how anyone gets to penis-in-vagina sex given our various bodies at the moment.

Fortunately, if I can manage to lie still and not wriggle or arch or turn or (yeah, no... mostly, I can't) .... there are plenty of other options -- sex ain't all about the penetration (thank god). And (thank god), communication is an important part of the mechanics. It's tough to be reenvisioning our life together, my body, and my body's place in our relationship -- don't get me wrong. And, yes, I am often down about it -- but there's no good time for such a reevaluation. I remind myself daily that we would be negotiating physical change even if I hadn't had the surgery (and now that the surgical pain is over, I/we stand a better chance of creating something new, different, and interesting).

Another day. Pulls off sweater over head (gingerly avoiding right shoulder). Wrestles pants to the ground (gingerly avoiding right hip). Gathers all the equipment necessary for going to bed (heating pad, gameready ice cuffs, gazillions of pillows, wedges, cat). Locates anti-spazz pills, finds water glass, fills it. Sets alarm. Pulls on layers and layers of night clothes. Looks for hat -- no, not tonight.

Puts it all aside. Tonight, I'm going to get lucky. We will start with holding. Who knows what we will do. We're going to start the whole experiment (again)!

Sexy Shirt Design Here (it's the best I could find without being overly gendered or offensive -- not an endorsement. I just liked the image).

Deep breath. Away it goes.

How We Are With Each Other

A good chunk of this blog talks about relations between disabled and non; equally as important, though, is the question of how we are with each other. My language here is meaningful and somehow deeply resonant within me. It's not my phrase: "how we are with each other" was a passing usage from a disabled friend of mine -- we were talking about something and suddenly found ourselves looking deeply at uncomfortable encounters with other disabled people.

This is a hard post to write -- gonna have to look at some ugly stuff -- but I think it is an important question. It's easy, in theory, to be all disability rights, all pro-equality, justice, and stuff -- but what happens when we are offline and not consciously presenting our most yay, right on personas?

OK. So. Umm. I often feel uncomfortable when someone else's impairment kicks me out of my familiar world view; I become uncomfortable around other less familiar to me at least disabled people. For example:

• I feel embarrassed when for impairment reasons I am unable comprehensively to communicate what I have to say and equally awkward when I am unable or don't know how to respond extensively and in the same spirit to someone else's communcation. What happens when I can't understand what you are saying? Or when I can't make you -- see that? *make* you -- understand what *I* am saying?
• I feel uncomfortable when I am meeting someone new; I don't want to somehow fall afoul of the obvious disability thing to do or not do. Or, worse, just assume that something is OK because it kinda is with most people I know with this impairment. I feel like I should know, but I know that I should just ask. And I feel awkward about asking because I think I should know because I'm all cool with disability, right?
• I don't want to hurt anyone's feelings with my word choices, but I do. I feel self-conscious and like I screwed up when I use the word "crazy" -- even if the person with whom I am speaking doesn't have a psych impairment. I never use the r-word; I'm even somewhat careful about saying something is insane; but somehow crazy pops on out as if there were no filter. The other day, I panicked because I shorthanded a conversation and ended up using a deeply offensive word. I didn't mean to give offence -- and as it turned out, I didn't -- but I wasn't paying attention.
• I hate asking for help from another disabled person; I assume most people will ask if they want assistance with cutting food or lifting something, but that doesn't mean that I won't feel uncomfortable about helping out.
  
• I don't want to be seen as one of those disabled people. I separate my disabled community and my disabled friends from the disabled people our culture deems less desirable; we are the "good ones."
  

I said earlier that the phrase "how we are with each other" meant a lot to me. I didn't want to get going on the more familiar topic of the disability hierarchy or disability shame -- though that is also an important question. Nor did I want to write about how we should be with each other. As citizens of a common land, we know how we should be. That might not necessarily be the same as how we should act or what we should do. I wanted to write about how we are in face to face contact, about how we encounter each other on the street, about our fears for and about each other and ourselves.

How we are with each other alternates between a sense of community and state of fear. How are with each other depends a lot on what we do with internalized disability prejudice and our own fears for our wellbeing, access to resources, and place in this world. How we are with each other is a product of our generosity and grace. How we are with each other is how we treat each other, react to each other, and touch each other. How we are with each other depends on where we are with ourselves.

Wheelchair Rage: The Other Side

Today, Ruth@WheelieCatholic talks about wheelchair rage, the out of control anger, spite, malice, temper that happens when people have to navigate around wheelchair users. I love the way she turns it around: It is not we who rage because we use chairs; it is the members of the general walking public who "assault, bully," and attempt to intimidate chair users.

I liked the post a lot, and then, I got hung up on the word "rage." You know? When something gets starts bouncing around in your brain? Yesterday, it was the theme tune to Dexter: today, its the word rage. Rage. RAGE. rage. I dragged the sound of it out to such an extent that it became onomatopoeic; then, I wondered how people use the word. What kinds of feelings and actions do we cluster under the umbrella of rage?

As is usual in such moments, I turned to the online OED (subscription only). And sure enough, there were some good entries. Obsolete usages such as

1. intr. a. To behave wantonly, licentiously, or riotously with (a person); to romp, frolic, play. b. To indulge riotously or wantonly in (an action, practice, etc.).

And my second faves:

8. trans. (refl.). To bring or put oneself into some (calmer) state by raging.

9. intr. colloq. (Austral. and N.Z.). To enjoy oneself unrestrainedly, usually at a party, nightclub, etc. (typically implying the consumption of alcohol or recreational drugs); to ‘party’.

There's a moment, you know, in every encounter when you could pull back and let the person who's being an ass, be an ass. There's a moment in every angry interaction where you could just suppress your anger and walk away. It's a moment where you have full control, a choice. And instead of doing the right thing, you fully intentionally go ahead and enjoy the bad. Oh, yes. You might even say you indulge. There's something there; you let go, unrestrainedly, licentiously, wantonly (though probably not in that sexual sense). You rage your way into a sense of tranquility and you somewhat enjoy it.

I know that when I let go I can hear my voice get hard and sarky. I dig down and become biting -- I love the feeling of satisfaction when I pull off some deeply cutting and absurd putdown/comment. I love how quick I can be; I'm not hurt so I'm not lost for words. I'm raging. I let the torrents of feeling pour through me, washing out that anger; from a distance, I see myself enjoying myself. I have no shame that I am in a public scene -- and scene it is: this is a performance. And when I am done, I take a figurative bow and leave. Ahh. That feels better: I've drawn a little blood. Score: I've been behaving badly in public.

The last time I took down a walkie -- last week -- it was with movement and not words. I'd had a day of it in New York. This time, though, I was out with my crip buds. He looks up; he sees me. There's a clear look of confusion and panic on his face; he doesn't know which way to move -- left? right? I keep coming with the force that only power wheels can give you. He dances -- literally -- a river dance of panic. His feet both lift off the ground and touch; I don't hit him, but only because he ducks under the scaffolding. My last glimpse is of his "oh-shit" there's another one out there, too! I laugh. It's rude to laugh outloud like this. I laugh so hard that I begin to cry; the amusement spreads through the group of us. He must have heard.

OK. So, not raging -- just the performance of rage. The last time I actually raged on someone, with anger and with a sense of performance? Well, there's this incident here -- I chase down a woman and start banging on her car; the comments section list a couple of other angry wheelies out there, too. Oh yes? There's this scene in which I literally meltdown at the airport (and get as good as I give!). Beyond that? I've not really had the chance to riotously frolic, as I wantonly party in rage; Wizard can't remember an incident, either. Hip surgery apparently makes me a nicer less confrontational person.

So Not Funny

I have a dry verging on dour sense of humour. Very few mainstream comedy acts/shows/artists/ clips make me laugh out loud. I also don't find the below funny.

Between the "one-eyed Scottish idiot," (yes, that's a real quote) who's running the UK and the Saturday Night Live version of New York governor Paterson (on which see the unintentionally ironically "inspirational" Clarkson NYT piece here and William Peace movement piece here), you can sort of see the logic that leads to assessments of the global economy as crippled. How can "crippled" leaders resolve "crippled, paralyzed" states? Anyone up for some blind leading the blind jokes?

Disability in itself is not funny in these kinds of scenarios -- I reserve the right for those of us with disability and those of you who live with and know our worlds to laugh at the shit that happens -- because that *is* funny. And I also don't buy the argument I saw floating around in the bad New Yorker Obama cover discussion -- It's actually pretty funny among those of us who know.... we're just worried about what the mainstream audience might think. The elite are not allowed to poke fun at disability because they are sophisticated and know better. See the recent flap about Carol Thatcher and the golliwogs. Mock, if you must, Paterson and Brown for what you see as their weak, ineffective efforts to stabilize the economy, but note this is separate from their physicality. And, yes, that would go for race, gender, and size jokes ... in my book. Tear apart what they say and do. Don't make intellectually lazy humour focused on the condition of their bodies.

Also on my so not funny list are the MTV episodes of How's Your News? Disclaimer: I haven't seen the original HYN film -- I've only seen the clips/episodes aired the other week at DisTHIS. (People, if you are in NYC and aren't going to DisThis...!!). Here's the concept: from the HYN site.

How’s Your News first began over ten years ago at a summer camp for adults with disabilities in Massachusetts. We were working in video class and searching for a format which could include as many people, with as wide an array of disabilities, as possible. So we began making our own news shows.

One day we decided to bring some reporters downtown to interview people on the street. These first two reporters were Bobby Bird and Sean Costello, two men with Down Syndrome. The interviews they conducted were both funny, and sweetly revealing. When we screened them for the camp community we got a great response. We kept making videos with other reporters from the camp and at the end of the summer we compiled a vhs video tape of our favorite man-on-the-street interviews and made copies for our friends and family. Those tapes got copied and passed around and one ended up in the hands of Matt Stone and Trey Parker, who were simply two struggling filmmakers at the time. They contacted HYN director Arthur Bradford and told him they’d love to see more videos like this. The three of them struck up a friendship and when Parker and Stone hit it big with South Park, they offered to finance a short documentary staring the best reporters from the summer camp. Bradford and some of the other counselors put together a team and the first “How’s Your News?” video was made in 1998.

I saw clips from the 2004 Democratic and Republican Conventions film. And I laughed my head off. It was a very mixed kind of laughter, though. Funny, absolutely funny: the reactions of the interviewees to the HYN team. Funny, because these sophisticated societal and cultural leaders were so discomforted that their unedited, unstylized selves came out (with the rare exception of, for example, such skilled pols as Hillary Clinton -- whose response revealed the deepseated nature of her political animal). My critical side might have argued that it is deeply problematic to persistently and consistently characterize disability as such a troubling societal force instead of part of human variation, but it was out-argued by my exhilaration at the control the HYN had over their subjects. Yes, they were using the very characteristics that marginalize them from the mainstream world in the very ways that are behind our culture's rampant discrimination, but because they *knew* what was going on, because they could be seen to have complete control, it was funny. (Yeah, it's a fine line).

By the time the HYN thing had come to MTV, I saw something very different. The edginess, the control, the sheer willingness to confront, expose, and reveal? All gone. In the MTV series in the limited number of episodes that I saw, the power of the HYN team was given over to a series of gags in which control of the moment and the humour of the situation passed to the series directors. The encounter of disabled and non was revealed as a play in which the disabled team participated in hyperbolized versions of their disabilities (not themselves), complete with shots of parents giving diagnoses and calling one of them "indomitable." The non disableds got to play super straight men -- so straight that the gag of disability was revealed all the more. It was deeply uncomfortable to watch. And very unnerving to hear laughter -- how could I tell where the line between "at" and "with" was? I didn't know. And, moreover, I didn't like not knowing where everyone else in the room was one single bit.

The discussion after the screening had memorable moments. But, hey, MTV -- listen up! If you are going to screen this stuff to a large audience of movement disabled people, expect resistance. And send someone who can also maintain a non-mainstream perspective on the show. Some things are that stuck with me: We should commend MTV, such a purveyor of dominant culture, for taking on the HYN thing. MTV made a series of compromises to mainstream HYN. MTV has a particular audience, a particular demographic, for whom the show has to work.

When I hear that, I ask ... who is the MTV demographic? Young [mostly white, ablebodied] adults from 12-34. Also: Median Age: 21. Median Income: $49,773. Income: 47% of all MTV viewing households have an income of $50,000 or more per year and 22% have an income of $75,000 or more per year. Education: 42% more likely to have college. Source: Nielsen, 04/01/02-06/30/02. Base 2+; MRI Spring 2001, Nielsen. PNF 2Q’00, MRI Doublebase 2003 (here). Interesting, no?

What do they want? Not unadulterated How's Your News, but entertainment that confirms their self image and self understanding in the world. (The last episode has them climbing a freaking mountain ..... hello? People? metaphor? As one audience member said, "I'd love to hear Eli Clare speak to this!) For the new HYN to succeed in this environment, it cannot unseat deeply held fear and prejudice: the new show turns disability into a gag that works for its demographic and it is as unfunny (to me, at least) as the Benny Hill Show.

How's Your News premieres tonight on MTV at 10:30 EST on MTV.

Move From Your Vagina

At various points in my dance instruction and PT/rehab, I have been told the equivalent of "imagine your plumb line," "a pole bisecting you," "a stick in your core," "find your sitz bones," "ground yourself," "engage your core muscles," "activate your second chakra," "lace your corset -- top to bottom, as well as side to side." When disabled people are in the room, a teacher will often stress the idea of imagining vs. actually feeling the core and lower abdominals engage. Imagine yourself, your movement, your body stretching out from your core -- shoot your energy down and out at the same time .... They are all talking about the same thing: transference of energy from your center to your periphery while remaining grounding through your center. (Or something like that).

Yesterday, a disabled friend remarked that a choreographer had told her to "move from your vagina." I love that. I LOVE that. I love how bold, explicit, beautiful, emotional, powerful, and anatomically effective it is. It is all of the above messages at once and more. To imagine myself moving from my vagina is to envision all the power and passion of dancing, to access all the physical and emotional strength that I could possibly need. It adds a strong strand of sensuality, of wholeness, of integrated self. I love that. I want that.

The trouble is I can't find mine. I mean, I know *where* it is -- the same place it's been all these years -- I just can't find it when I am sitting in my chair, when I am about to move, push, extend, grow, dance... I know the muscles move, but I don't have active contact with everything down there. Where the hell is this thing? (Removes from head image of vagina set free and wandering the universe -- hey, come back here!)

I am sitting in a coffee shop imagining sitting on my cushion from my vagina (ummm.. that sounds rather weird to write - just as well I am typing and not doing the v-r thing today). I have moved myself into a different sitting position; a different part of my back touches the back rest. There are no mirrors here, but I think I am sitting differently. It's hard to balance here and stay up here, much less move into dance positions. I can't imagine having the strength to stay here throughout a five hour rehearsal or some of the wild dancing that we do.

But perhaps one day you will see me pushing down the street. I will have a wickedly happy smile on my face -- I will have found and claimed my vagina.