What Getting Better Means

I'm envisioning this in its final form as a letter to a friend with whom I don't have enough contact.  I want to be a little closer to this person, but can't because disability intervenes.  Or, rather, his lack of knowledge about how I understand disability intervenes.  If you have ideas about how to make it better, please comment away -- this isn't the final form of the letter; it's more of a way of writing my thoughts and feelings out in conversation with you all.

Dear Friend!

I'm hoping you won't take this the wrong way, but I've been wanting to talk a little about our different perspectives on disability and illness.  I'd like to thank you for being so enthusiastic about my increased function, but want to explain to you how "recovery" works for me and what getting better means.  That way, I think we won't come adrift over some awkward moments.

Remember when you were enthusiastic about how much better I seemed since the last time you saw me and I kind of shrugged it off?  I think you thought I was being unnecessarily pessisimistic about my body and my life.  I got the feeling that you were trying to cheer me up and out of it.   Things were a little difficult when, after that, I literally and figuratively, turned my back on you and what you were saying.  I shouldn't have done that; I'm sorry.  I couldn't figure out where to start a conversation with you about what was up and why I wasn't able to celebrate with you.

I'm writing this as a conversation starter -- not as a critique.  Please get back to me on anything that seems a little strange to you.

I agree that, since my hip surgery, I have gained significant new strengths and that I am able to do more now than I could 18 months ago.  Part of that improvement results from the surgery itself, and some of it comes from the 10 or so hours PT/rehabilitative work that I still do every week.  The improvement itself is not the issue.  It's what improvement means both in the context of my disabled body and in the context of disability in general.

First, the physical facts.  I have improved.  But that doesn't mean that I am cured or on the road to being cured.  Improvements are present for me until they are not.  Just four days after we last saw each other, I had a major episode that made it really difficult to sit, never mind walk my way out of disability into a 'normal' life.  I still haven't recovered from that episode and it has been four months.  In general, I live in a cycle of event, recovery, plateau, and event.  Sometimes, the recovery is actually an "advance or an improvement."  But often, I struggle to get back where I was before.  So, I don't attach any great meaning or significance to recovery.  I simply can't.

But please don't think that I have given up on my body and myself.  This is a crucial point.  I think you think that could choose to stay where I am after something goes wrong or I could continue to work fiendishly on my body so that I get better.  I am in neither of those places; I work on my body because it give me great pleasure to do so.  I am so excited to see what it can do, to push it to its limits.  I am delighted when I am stronger and when I have more endurance and am more stable.  PT and rehab exercises have given me that.  I continue to work because I am shaping my body for dance and because I believe that the stability and strength make the dance injuries less frequent and make the episodes less severe.  I have no proof of that, of course, but it keeps me going on a hard day.  All this is to say that I work my ass off but that I see improvement as a tool that enables me to live harder and faster.  I love improvement, but I am not invested in the next step as a sign of remediating the manifestations of disability.  And even if I weren't doing the PT work, that wouldn't mean that I had "given up."

As much as I love improvement, I don't feel driven to work for total healing and cure because I have come to understand a different politics of the body, one in which there is neither cure nor giving up.  The body just is.  My understanding and experience of disability has been almost entirely within the tenets of the disability studies, disability rights, disability arts and culture movements (happens when you become disabled at a university, I suppose).  My experience is perhaps unusual for disabled people, particularly those peeps who live where you live most of the time -- you might even justly call it privileged.  But it is my experience.  And that experience teaches me that it is OK to live as I am.  To find history, culture, identity, sexuality, and pleasure in where I am.  It moves me away from your medical fact based approaches to the body and takes me towards an understanding of the body as a work of art.

In my world, there is no "better."  There is only doing what I can on a given day.  There is only working with what I have: the art of my body.

ArnieVille

Disabled activists are camping out to protest cuts in IHSS (in home support services).

From the IndyBay, by Jonathan Nack: "Last month, on May 21, a week after the Governor's proposed budget was announced, outrage and anger led Stewart and a small group of other activists to seize a traffic island on a major thoroughfare in Berkeley. Tents, banners and picket signs sprouted up.

For four days and nights the little tent city they dubbed “Arnieville” visually dominated Adeline at Stewart Street. Motorists and passersby could hardly miss their message to put a halt to cuts to In-Home Support Services, social security income, Cal Works, General Assistance and Medi-Cal."

ArnieVille has been reestablished.  This speech is an important press release given and, possibly, written by Jean Stewart.

6/24/10 PRESS CONFERENCE STATEMENT

Welcome to ArnieVille!, our humble temporary home. If the budget cuts go through this may be our humble permanent home. We’re CUIDO, Communities United In Defense of Olmstead. We’re here because we’re sick and tired of a budget process that treats us as expendable. Every year our governor & legislators look for items they can cut from the budget, & every year they single out  In-Home Supportive Services and Medi-Cal, along with other programs that elderly, disabled, & poor people depend on, like CalWORKs, Adult Day Health Care, & mental health rehab. And every year we go thru terror, fearing that we’ll lose our workers. Meanwhile our caregivers go through their own dread that they’ll lose their jobs and be unable to feed their families.

In case you’re not familiar with IHSS, it’s a model program, one of the most effective in the country. IHSS pays workers to help low-income people with disabilities with critical daily activities like eating, dressing, bathing etc, so that they—we--can remain independent in our homes and not be shunted into nursing homes against our will. 490,000 elderly & disabled people in CA receive services under IHSS.

Governor Schwarzenegger wants to slash IHSS by up to 40%. The Democrats offer a counter-proposal, and the Republicans a counter counter proposal. From one day to the next, the percentage keeps shifting. In other words, we’re a moving target.

Try being told that from now on you MIGHT NOT—depending on the final budget negotiations, depending on the governor’s mood, depending on political machinations that go on behind closed doors—you MIGHT NOT be able to get up in the morning anymore, starting July 1. You MIGHT NOT be able to eat. You MIGHT have to go to a nursing home. It all depends. But don’t worry, be happy!

Well we’re not happy! But it’s a democracy, right? So we’ve marched, we’ve rallied, we’ve met with legislators. Various disability rights organizations have filed lawsuits. We blockaded the governor’s office in Sacramento for an entire day, and were arrested.

Pretty dramatic, right? We were all over the news. And yet here we are, in 2010, going through it all over again. Same attitude on the part of the lawmakers. Same dread in our hearts, and in the hearts of our caregivers.

Arnold wants us to file meekly into nursing homes & into our graves, while he attends to his 3 luxury cars and 4 houses. California is the only oil-drilling state that does not impose an oil severance tax. And California has the highest percentage of billionaires in the country. They come here for a reason, folks, and it ain’t just the California sun.

Legislators target us because they think we’re powerless, because we don’t have wealth. A lot of us can’t work because of our disabilities, so in their eyes, we don’t contribute to the economy. But real power isn’t related to wealth, real power happens when people join hands, forge common cause, and resist injustice together.

So here we are, camping out, in the tradition of the Hoovervilles, shantytowns that sprang up around the country during the Great Depression. We named our Hooverville ArnieVille, and we ground our resistance in Olmstead, [5 mins] a Supreme Court decision which held that the unnecessary segregation of people with disabilities in institutions constitutes discrimination based on disability. Olmstead is the engine that fires us, and Olmstead gave us our name—Communities United In Defense of Olmstead, CUIDO, which comes from a beautiful Spanish verb that means “to care for”.

We camped out in May for 4 days, and the support we received from the community was so gratifying, and the media coverage so positive, that we decided to reprise ArnieVille, choosing June 22 because it’s the anniversary of Olmstead.

But why Olmstead? What’s the connection? If the proposed cuts to IHSS, Medi-Cal, and other programs are passed, tens of thousands of frail elderly and disabled people will end up in nursing homes, emergency rooms, homeless shelters, and mortuaries. And the incarceration of our people in nursing homes is a violation of Olmstead. Not to mention the fact that nursing homes are 5 times more expensive than maintaining people in their homes.

Arnold has targeted us in another way as well: he plans unannounced visits to IHSS recipients’ homes, based on the deeply offensive notion, supported by zero evidence, that WE are frauds,  bilking the system. It’s a trick that’s old as dirt: criminalize a class of people in order to deflect criticism of malevolent social policies.

We may seem very festive to you on this occasion, with our signs and banners festooning the trees. But make no mistake: we’re deadly earnest; we’re in this struggle because lives hang in the balance. We’re no longer requesting accommodation; we DEMAND that these programs be fully funded, not just this year, but PERMANENTLY. We refuse to go through this dread every single year. Enough is enough!,

Indeed it is.

BTW: here's some of the summary for Olmstead.

In the Americans with Disabilities Act of 1990 (ADA), Congress described the isolation and segregation of individuals with disabilities as a serious and pervasive form of discrimination. 42 U.S.C. § 12101(a)(2), (5). Title II of the ADA, which proscribes discrimination in the provision of public services, specifies, inter alia, that no qualified individual with a disability shall, “by reason of such disability,” be excluded from participation in, or be denied the benefits of, a public entity’s services, programs, or activities. §12132. Congress instructed the Attorney General to issue regulations implementing Title II’s discrimination proscription. See §12134(a). One such regulation, known as the “integration regulation,” requires a “public entity [to] administer … programs … in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 CFR § 35.130(d). A further prescription, here called the “reasonable-modifications regulation,” requires public entities to “make reasonable modifications” to avoid “discrimination on the basis of disability,” but does not require measures that would “fundamentally alter” the nature of the entity’s programs. §35.130(b)(7).

Respondents L. C. and E. W. are mentally retarded women; L. C. has also been diagnosed with schizophrenia, and E. W., with a personality disorder. Both women were voluntarily admitted to Georgia Regional Hospital at Atlanta (GRH), where they were confined for treatment in a psychiatric unit. Although their treatment professionals eventually concluded that each of the women could be cared for appropriately in a community-based program, the women remained institutionalized at GRH. Seeking placement in community care, L. C. filed this suit against petitioner state officials (collectively, the State) under 42 U.S.C. § 1983 and Title II. She alleged that the State violated Title II in failing to place her in a community-based program once her treating professionals determined that such placement was appropriate. E. W. intervened, stating an identical claim. The District Court granted partial summary judgment for the women, ordering their placement in an appropriate community-based treatment program. The court rejected the State’s argument that inadequate funding, not discrimination against L. C. and E. W. “by reason of [their] disabilit[ies],” accounted for their retention at GRH. Under Title II, the court concluded, unnecessary institutional segregation constitutes discrimination per se, which cannot be justified by a lack of funding. The court also rejected the State’s defense that requiring immediate transfers in such cases would “fundamentally alter” the State’s programs. The Eleventh Circuit affirmed the District Court’s judgment, but remanded for reassessment of the State’s cost-based defense. The District Court had left virtually no room for such a defense. The appeals court read the statute and regulations to allow the defense, but only in tightly limited circumstances. Accordingly, the Eleventh Circuit instructed the District Court to consider, as a key factor, whether the additional cost for treatment of L. C. and E. W. in community-based care would be unreasonable given the demands of the State’s mental health budget.

You Are Me

Apologies for the ungrammaticality of the title, but the correct version, "I am you," lacked the rhetorical force I wanted.  This is a rant.  An angry little rant, inspired by those who sit in wheelchairs and avert their eyes with a noticeable recoil of their bodies when they see me coming.  Are you one of "those" people?  Listen up.

You are me.  No, really.  I want you to remember that every time you avert your eyes from me.  Seriously?  Do you think I don't see that little shudder of yours?  Do you need to hold yourself so separate from me? It's not as if we aren't both sitting in wheelchairs.  So, why do you think you are so different?  Are you so afraid to see yourself in me?  And in what I represent to you?  You may think that yours is a temporary situation and that you aren't really disabled -- you aren't one of them, really -- because, well, it will get better, you can get up, it's just temporary, you know, because you can't walk long distances.  It's just your leg, your back, your illness...

I have some news for you.  Stop trying to judge disability by level of function.  Just stop.  And take a really good look at yourself and your fears.  Temporary, your physical impairment might be.  But for the meanwhile, my life is better than yours.  I am less "disabled" than you because I can live my life in my wheelchair.  I know some of the history of disabled people; I participate in our culture and society.  I have a place in our world -- as you do, too -- but I accept and live out to the very fullest my life in this place.  I know how my chair works, and I am comfortable in it.

And what about you?  When we pass, I sometimes see what might be described as fear, embarrassment and/or shame in your eyes.  And I know those things.  But I have also learned that you cannot live in that space forever.

If you can accept how much of yourself you see in me, your life will be changed forever.

Sexuality and Disability Series

Sexuality and Disability Educational Series

For all Disabilities and Sexual Preferences

June 30 – September 22 Wednesdays, 6:30 – 8:30PM
Center for Independent Living, Berkeley, CA
Suggested Donation: $25 per class

Sexuality and intimate loving relationships are a fundamental part of everyone’s life. This 12-week series is designed for individuals who are living with a disability as well as his or her friends, families, partners and attendants.

You will gain ways to improve:

• Self-Esteem and Body Image
• Healthy Relationships
• Delicacies of Kissing and Touch
• Chronic Pain and Sexuality

Our philosophy:

• Sexual Health
• Practical Tips and Tools for Enhanced Sexuality
• Solo Sex & Partnered Sex
• Participants will have a chance to experience the support of peers and have an increased sense of community
• Attendees can experience a sense of empowerment, hopefulness, improved self- esteem and self-confidence
• Learn new skills and resources to expand knowledge regarding one’s sexuality, sexual health and intimate relationships in a nonjudgmental environment
• Workshop goals to be achieved through presentation of topics, facilitated sharing and experiential exercises

Limited Space Available.

To reserve your place please email Dr. Biggs at
rebiggs     @              mac.com

For more information go to www.somaevolution.org

Super Movement

I've been thinking a lot about dance and its relevance or not to the larger community. On a recent 4-5 hour long flight, I was too cheap to pay for a movie and too lazy to watch tv. Instead, I watched over and over again a trailer for one of the dance competition tv shows. My eye was caught both by the nature of the moves in the trailer -- extreme, wild, beautiful -- and the idea that these moves could be compelling/attractive to a viewer. The dancers who dived and twirled and splitted and whirled over and over again gradually connected themselves to a number of concerns of mine.

1. What is dance?
2. Who comes to dance performances?
3. What kinds of movement constitute dance?

The best way into this swirling mess of thoughts is, I think, a comment made by a recent audience member. They compared a recent performance with one they saw perhaps 10 years ago. We talked excitedly about the performance, but the comment that lingers most prominently in my mind is one about integration. In the early years of the company, my commenter remarked, the disabled dancers were less integrated into the work; this was in part a function the complexity of movement. The non disabled dancers did complicated things while the disabled dancers seemed somehow to be on a different track. It wasn't that the work the disabled dancers did was less meaningful; it was that, by comparison, their movement seemed less complex. Now, however, all the dancers performed movement of a similar kinds -- both simple when needed and complex when needed.

This comment has stuck with me because it raises a number of questions. As any art form changes and as dancers grow in themselves and in their bodies, the possibilities for expressive movement changes. That which was physically not possible becomes possible and that which seemed at first artistically non desirable is now important. I think some compromises may have been made, though. As I watch us fly around the stage, I wonder if we are sending a message to those whose movement patterns and habits don't allow them to move in the same way. I wonder if we are unintentionally suggesting that professional level dance is made up of daring acrobatic and possibly intimidating moves. I wonder if we are possibly turning away beautiful movers because they fear their bodies cannot do what ours can do. I wonder if we have become supercrips in our desire to become the best possible dancers and I wonder if our moves establish a pattern of expectation about what dance is and can be.

Dancers push themselves. We explore our bodies. But that exploration does not have to end with extreme movement. Tiny movement. Plain, simple, movement are just as much a part of the extraordinary skill of a dancer. And so I wonder.

I wonder if, as the company has over the years got "better", the price of that has been a series of expectations for ever more complicated and daring moves. I wonder if we will be able to keep up and, even, keep our reputation/ following as dance audiences, influenced by the tv shows with their own kinds of extreme movement, turn to art dance. Will simple speak alongside flashy?

Most of our work has been created by non disabled choreographers. I know that as we strive, for example, to move in unison, that I feel a lot of pressure on the disabled dancers to "keep up." The rhetorical and movement dynamics are almost without exception focused on translation/adaptation. And, as part of being able to dance in these ways, we have become ever more adept at making the extraordinary look like "ordinary dance."

Other parts of a piece "come" from the movement of our disabled bodies and assistive technologies. Here again, though, I am seeing more and more interest in what is simply hard to do because it looks hard to do. The spectacular is always eye-catching, and audiences enjoy it. The smaller things, the tiny things that make the spectacular possible are, I feel, less appreciated-- by audience members and non disabled choreographers alike.

I think that this is particularly unfortunate if you happen to be wondering whether or not you can be a dancer. What you see influences what you think dance is and can be. If all you see is hyper-athletic bodies doing awesome stuff and you know your body can't do that, the barrier to entrance becomes that much higher: instead of seeing a role model, you have to fight harder for your vision of yourself as a dancer. And that makes me sad.

Dance is extraordinary, but sometimes the extraordinary is the ordinary.

Full Radius Workshops

Announcing “Fridays with Full Radius Dance”: partner stretching, contact improvisation, physically integrated technique and choreography with one of the nation’s leading physically integrated (dancers with and without disabilities) modern dance companies.
Free of charge, but donations gratefully accepted.

Friday, July 9 
Friday, July 16
Friday, July 23
Friday, July 30

Sessions begin promptly at 10:00 AM and will continue until 12 Noon. This includes a short break. Please come early in order to be fully prepared prior to the starting time.

Open to adults and teens (14 +) with and without physical disabilities. No experience necessary.

Attire: Comfortable clothing that allows for freedom of movement.

Held at the Atlanta Ballet Cobb Studios, 2000 Powers Ferry Road, G-4, Marietta, GA 30067. (The intersection of Windy Hill Road and Powers Ferry Road.)

Questions and/or to register, please contact Douglas Scott at fullradiusdance@aol.com or 404-724-9663.

On Tour

Building trust with one another as dancers is a complicated endeavor.  I am always conscious of how vulnerable we are, personally and bodily. So, you know?  We take care of each other.  We experiment, yes; we put ourselves at risk, yes.  But we trust one another deeply and fundamentally.  We have personal connexions, yes, but in addition to that -- perhaps even aside from that -- our professional, dance connection means that we can do anything together.  And we do.  We regularly do the impossible.

We're on tour at the moment -- again.  It really is exhausting.  I swear the hardest part is not the dance, per se, but the traveling, the hotels, the endless and often fruitless hunt for good food.  I have appalling skills for food preparation at the best of times.  I live in NYC and in the BayArea.  These are good places to get amazing food.  We eat out a lot and Wizard loves to cook.  When there are no restaurants that look like fun, when we finish performing and everything is closed, we manage with microwaves, dried food, grocery store trips, and tiny hotel fridges.  It's doable, but it is one of the things I find hardest about being on tour.  Anyway.  That was a diversion.  Trust.

Trust.  One of our touring rep pieces has a large part for a community cast.  Dancers, disabled and non, don't have to have previous movement experience -- the piece allows for professionals and first timers.  We hold auditions and choose a diversity of bodies and techniques and peoples.  Side rant: please, please, please -- disabled peeps who might be reading this and might be curious about what it takes to be a dancer on stage in a community role of a professional performance.  It doesn't take massive athletic ability-- thought we certainly know how to use someone who is a daredevil -- all it takes is for you to know your body.  We can work with you and help you build movement sills.  You just have to know youself and your body.  We can help you with the rest.  Please!  Please?

How do we do that?  How do you become a dancer in our piece?  Trust-- in yourself, your body and the dancers around you?


One of the first exercises we do together involves walking side by side across the room.  If you manage to listen carefully with your peripheral vision and your body, you can feel your partner's heat and sense their breath.  We walk.  Across the room.  And turn around -- other side this time -- and back.  We walk.  And walk and walk.


And in the quietness of that walking, the focus and listening transform strangers into partners.  You can sense your partner and the other people in the room.  The silence reveals the sound of an exhale, the squeak of a wheel, pad of a foot, thump of a crutch.  And suddenly, 30 people become one.

Recommended

Well, it seems that all is well citizenship-wise. I went to my interview, passed the interview, and have been "recommended" for citizenship; I won't actually become a citizen until USCIS has reviewed my interview and until I have taken the oath. The interview itself was odd and strangely nerve-wracking. Nerve-wracking because even though I met the paper requirements and am a competent speaker and writer of English, I didn't think that I could take anything for granted. I was also slightly worried that I would flunk the exam.

The interviewer reviewed my N-400 and re-asked me some of the questions on the form.

The form itself is complicated. Here are some of the things I find particularly difficult.

(filed under General)

• 6. Do you have any title of nobility in any foreign country?
• 7. Have you ever been declared legally incompetent or been confined to a mental institution within the last five years?

My answer to this is no -- on both accounts. But what if I were to answer yes? These are eligibility requirements. I don't think the US disallows nobility on principle, so it must be that there is something about nobility that requires further consideration/examination. Would you have to document it? Does being noble complicate the question about giving up loyalty to any other country? Is it something about using (or not) a noble title in the US? Is there a distinction between being a Saudi prince, European gentry/royalty and African royalty/tribal leader? Is it about giving up status and privilege in order to live among and as one of the people? About a nobility that descends by blood and thus cannot be eradicated vs. voluntary conceptual affirmation of citizenship? Curious.

Even more curious is the immediate slippage from nobility to "legal incompetence" and "mental institution." Don't know what to make of that. Some thoughts. You can be declared "legally incompetent" and not be "confined." I cannot believe that having spent some time in a residential care facility invalidates (deliberately used) your capacity to be and value as a citizen. And if it doesn't, why does immigration need to know? USCIS doesn't ask about all medical conditions requiring residential care.... And what of "legal incompetence?" I have no idea what the implications of this are for immigration. I know a little bit about what it entails in the area of family law and medical self-determination, but immigration? Beats me. Suppose, however, that the answer is yes. That you were declared "legally incompetent" midway through the application process and that at the time of interview, your status was not determinable and that you might never be able to affirm your desire to become a US citizen. Does that invalidate your application? How much does being able to communicate that you still wish to become a citizen affect your application, if, say, you would qualify on all other grounds?

(filed under Moral Character)

22. Have you ever:

• a. Been a habitual drunkard?
• b. Been a prostitute, or procured anyone for prostitution?
• c. Failed to support your dependents or to pay alimony?
• d. Sold or smuggled controlled substances, illegal drugs, or narcotics?
• e. Been married to more than one person at the same time?
• f. Helped anyone enter or try to enter the United States illegally?
• g. Gambled illegally or received income from illegal gambling?

I've talked a little about the alcoholism thing before. I still don't know whether alcoholism can be counted as a disability and thus entitles you to protection under disability rights laws, but I do think that alcoholism is not a moral concern.

The prostitution one was hard. I was asked whether I had been a prostitute but not, I think, whether I had procured anyone for prostitution (I don't actually remember this). Again, the question is so what -- I think I understand why prostitution occupies such a place in the American cultural imagination of immorality. But is being a prostitute necessarily immoral? And look at the language -- if it had said "sex worker" would the valence of the question be the same? Some people choose sex work; others don't. And for those who don't, the morality of the question is hardly the point. Surely, there are other issues to attend to? I suppose that if you could document the ways in which you were forced into sex work, you might be able to make your case, but again .... the deck looks stacked to me. (And who says women can't procure...)

Polygamy in the US is illegal, granted... but why is that a moral thing that pertains to citizenship? There are other possibly interpretable as immoral/historically interpreted as immoral things that are/were illegal in the US, none of which affect the capacity to be a citizen. Is stealing worse than polygamy? The form asks if you've ever been arrested/detained/convicted, thus, for say, stealing or murder (crimes that are against the 10 Commandments and are as much a part of Christian morality as the conservative definition of marriage); the weight therefore depends on whether you were caught. Not whether you ever did it, as in the case of polygamy.

(filed under Oath Requirements)

• 37. If the law requires it, are you willing to bear arms on behalf of the United States?
• 38. If the law requires it, are you willing to perform noncombatant services in the U.S. Armed Forces?
• 39. If the law requires it, are you willing to perform work of national importance under civilian direction?

In my interview, these were interesting questions. I affirmed that I would be willing to bear arms. (I don't think there is any other acceptable answer if you don't have a history and documented tradition of pacifism). But then the disability stuff kicked in. I looked down at my chair. And the USCIS man thought it was a gesture of sadness? Anyway. He started talking about the "wonderful" things people do nowadays. And how I could fly a drone plane. He then asked if the chair was permanent....

The values by which we construct citizenship are just that. Values by which we construct citizenship. It's neither an absolute right nor an absolute category.

On another -- lighter -- note: Do you think the troops would want me go dance for them? I would be using my current skill set for important non-combatant service. smile. Oh! Here's another question. What do you think the politics are of sending highly skilled disabled people out to "meet and inspire" recently disabled vets? Dodgy, I would say .... but in a carefully nuanced way? Is it possible to think about a transfer of culture, skill, mentorship and friendship, without the baggage of inspiration?

But the good news is that I have been recommended for citizenship. And I am happy and grateful. Because now I can vote and change the world. Dammit.

What Kind Of Life?

In the comments to my Glee post, Gaina asks, "Do you think that your acceptance of your disabled body and life is because you had an able-bodied life beforehand and the things you used to do are now just done from a wheelchair instead?" . The woman doesn't half get straight to the point. And what a question!

The short answer is that I don't know. The longer answer is complicated, because I don't have my old life any more; I built a new external life. My new disabled life focuses on disability, disability arts, and disability culture; I and my disability are situated right in the middle of it. Most of my closest friends are disabled -- by choice, partly, and by necessity: I moved across country, and most of my non-disabled friends in my former life stopped, for whatever reason -- disability/distance -- being in touch (yes, that hurt). My income is derived from what I do with my disabled body. My online personas are centred around my disability; people know me as a disabled dancer/blogger/writer/activist.... My life is this extended exploration of life with a disability.

So, in that regard, no -- I don't experience this life as a kind of continuation of my able-bodied life, with the exception that I now work from my chair. I simply don't live that old life now. I rarely see people from that life; I don't live the geography or culture of that old life (for better or for worse). And, now, I don't even live in the same kind of place -- when we renovated, we made the house mostly accessible. As a result, I don't experience the environmental barriers of the old place, so I don't feel that I am always, always fighting to do the basics. In the Bay Area, you can pretty much take it for granted that anywhere you go will be accessible (can you imagine? we don't check even if it is a new place!! Yes, NYC is less than ideal) -- but the basic idea is that I started again in a new way, with new people, in a new place.

And, yes, the things that I used to do --the smaller things and more personal things -- are now done from a wheelchair. Sometimes, it's fun to feel my chair working for me. Sometimes, though, it pisses me off that I have to lift my chair out of the car, put it together, push it into the coffee shop, get some coffee, spill the damned coffee, push back to car, spill the remaining coffee, get into the car, dismantle the chair, put the chair in the car.... All that for a cup of coffee, most of which I won't get to drink? It pisses me off that restaurant table design means that I will always spill my food in my lap. It pisses me off that pavements are sloping..... yeah, I am still an angry bitter person about all the small things. The hassle of doing it all just gets to me sometimes.

And then, there's the stuff I (well, actually, I suspect that's a "we") do behind the scenes before we go out into the world and meet the stupid people and stupid environment. All the self-care and health and wellness work. The time it takes to do anything....

I don't have the sense that I am kicking back slightly, leaning into life differently, because things matter less/differently now because I am disabled now, because I had a successful life beforehand. I don't feel on a daily basis that I can let myself off the hook now because I manage to live, achieve, and make it. Disability isn't a soft position for me. Since becoming disabled, I've remade my life, yes, but I have remade it in such a way that it is perhaps fuller and certainly physically harder and less comfortable (at work at least) than it ever has been. My life is more intense. Every small success means more because I have had to work harder for it than I ever had to in my previous life.

OK. Honesty wins out here. I do let myself off the hook slightly. In my previous life, I would never have gone out looking as I occasionally do now. Now, I do and wear stuff that I would previously have found unacceptable, and I tell myself it doesn't matter because people will excuse it; they have lower expectations of me now. (Gosh, that's awful. Both for me to say and to do.)

And honesty again? I do know that I could not have had the life I did have if I had been born disabled. My parents would have given me their all, as they did. But it would have been a very different all. Instead of my personal narrative being one that transcends the expectations of a one born into my particular class and race background, I think that my disabled narrative would have been one embedded in that background. The Britain of when I grew up is so different (I hope/believe??) from the Britain of today that I don't think disability rights would have penetrated to where I lived.

None of this answers Gaina's question directly. The thing is, though, that, ADL's excepted, I began again with my disability stuff. I didn't relearn how to live in my old life; I learned an entirely new life that had disability at its core. And I changed personally. I feel very differently about myself. My values are different; my body is different; my whole person feels different.