Special Effects: Advances In Neurology: A Review Of Sorts

Every so often, your email gives you a gift.  Boom!  This one was mine.  Work by Neil Marcus.  Hooray.  And such work it is. 

Special Effects: Advances in Neurology by Neil Marcus

More than a document of the early days of the disability rights movement, Neil Marcus' collection Special Effects: Advances in Neurology is also a window into California zine culture of the 1980s.

Art in revolution: social justice, the human growth movement, art in the everyday. From flourishing dystopia to speech storms, Neil documents living artfully in Berkeley, California, and in Disability Country. Publication Studio is proud to present this collection of reprinted documents with a new foreword by Melanie Yergeau and an interview by Esther Ehrlich.

$15 softcover; $10 DRM-free ebook
80 pp.
7 1/3" x 9 1/2" x 1/8"

ISBN: 9781935662563 (permalink)

On the publication studio website is also a free reading commons link, where you can read the book for free and annotate it - write on!

© 2011 Neil Marcus
ISBN: 9781935662563
Printed and bound by Publication Studio
717 SW Ankeny
Portland, Ore. 97205

All that?  That's the publicity material from the website.  I'd like to offer not so much a review as a meditation.  Special Effects is some of the zines Neil created in the 80's -- though sometimes, the material seems so current, so biting and relevant.  When you see a date -- November, 84 -- it's a dislocation.  And that's the thing about Special Effects.  Just when you think you know how to proceed, the text loops back on you or jumps you from your present to the semi-hazy (for me at least) past of the 80's.  So, you can't just read Special Effects as you would a novel or a non fiction book; the center is unreliable; your present is unreliable.  The visual effects are both stunning and disorienting.  The texts are challenging and overwhelming.  You'd expect all this from a zine.

But in a disability context, the norms of this form take on added significance.  It makes sense for this content to be communicated as a zine.  Regular text formats fail to take on the diversity and diverse experience of disability.  Just as disability challenges who we are as individuals and as societies, so zines challenge our reading practices.  SE couldn't be a pastiche or scrapbook; it has to be a zine.  In another time and space, I'd love to find a way to think of this as a disabled text, instead of a text about disability, but that's another project.  As a zine, Special Effects takes our readerly expectations, stretches them into that uncomfortable position before snapping us back to an altered reality.

One of the joys of reading SE is the voices.  It's not a patchwork in an orderly, quiltedly sense, but a clamorous conversation of medical with commercial, political and governmental, personal and literary.  And rightly.  The voices are stunning; if things were linear, you would miss their force and/or become immune to their impact.  So, entering the world of SE is kind of like agreeing to enter a labyrinth knowing that you can never find your way out and that you should use the tenuous thread you took as a guide not to trace the paths, but to scale the walls.

Because how else other than scaling walls would you ever be able to assimilate and take on the joy, love, exhilaration, anger, riotousness and immense cruelty that Neil shepherds you through?  How else could you begin to understand this as one person's lived experience and not a mish-mash of old world, old school disability studies narratives?  How else could you read this gentle manifesto?

I mean manifesto both in the sense that if you read this, you will get a sense of the political layout for the disability world -- for why and how we fight for such rights.  But I also mean manifesto as its own kind of aesthetic.  (I began this post before the events in Norway -- manifesto was not quite such a loaded word then.)  I think of a manifesto not just in terms of function, project or purpose -- its uncovering, revealing of philosophy and intentions -- but also as having a particular kind of aesthetic in themselves.  No two manifestos are alike.  It's more that manifestos take what is usually understood about a particular relationship of language, form, beauty, normalcy and idealism and shatter them.  But the fragmentation is both a destroying and a creation.

Here's a moment of how it works.  In a section entitled "Classifieds and Personal:"

"SCAT SINGING for the disabled. Sliding scale. D.DK"

Ok.  So, the sliding scale thing is old news to anyone from the music world.  But here is it literal?  Instead of seeing the joke, we are asked to see the reverse: the literality of it.  This is what disability does.  It forces us to question what we think we know.  Scat singing is all too easily defined as "nonsense syllables," i.e, noise, not words.  Sounds.  Not words.  Disability takes us right there.  Does Neil want lessons in scat singing?  Does some other disabled person want lessons in scat singing?  What do we know about standard language?  So-called nonsense?  Words?  Recognizable words?  How do we know the difference between what we call words and what we call nonsense?  How is that arbitrary?  Dependent?  Linguists know a lot about this; it's a key part of most theories of language, of course, but in the everyday world, the move from scat to "speech impairment" to "disabled speech" -- speech that arises from a disabled body and communicates itself in the world without judgement, as a language in itself -- that's powerful.  What are the D. DK at the end? Or are they a beginning of a scat?  Or is D. DK the person who wants scat?

So few words, so many questions.

That's how Special Effects works.

Living On The Edge

This post is the immediate outcome of an intense and passionate conversation with Mia Mingus; it also has roots in conversations with Scott Rains and Riva Lehrer.

Mia and I met one sunny day in San Francisco.  For coffee, supposedly.  Well, we had our coffee, but our plans were altered as Mia ended up bailing me out of car trouble.  The feeling of risk that came from my car running, literally, out of power and from me pushing it farther than I knew it could go softened into a conversation about edges and living on them.  We agreed that we would both post today, Tuesday, at 10 AM.  Her response to our conversation can be found here.

Mia's words and our interaction came at an important moment for me.  For the past months, I've been thrown off an edge -- pitched from my regular dance life into a space of enforced rest, fear, pain, rehab and, finally, some recovery.  I've felt that edge keenly.  At lunch the other day, I was explaining to a friend that I had had this powerful conversation and that I was thinking about these edges and how they can shape your life.  A second and very different conversation ensued.  Emotionally, I'm not sure how to describe what these conversations meant to me.  I feel supported and challenged; these are difficult issues.  It's gonna be a long-ish post.  Hope you can hang in until the very end.

A big part of disabled life is management (link goes to a post of mine about overcoming.  Or not).  You have to figure out emotionally and personally how to live with your disability and how to live your life with your disability -- that's more of an external thing.  Theoretically, over time, you figure out how much you can do; what you can do; and when you can do it.  The thing is, though, that I don't seem to be able to live consistently within my limits.  That's no big shakes -- I know few people who do.  What's important to me is *why.*  And, for me, why has to do with what I tell myself.  With what I believe I should do.  And with my fear about what it would mean to live, well, like that.  Whatever *that* might be.

But let me deal with the easy part first.  Sometimes, I don't know where the edge is until I fall right off it.  I'm talking here about the physical edge and the moment when I realize that in fact I was misreading my body signals or that I didn't know it would hurt/cause a problem/injure me until I had done it.  How do you know when too much is too much?  I encounter this moment often in dance.  Sometimes, I feel my body stretching into a position or place.  It feels good.  I feel safe and strong.  Months later, when something is hurting/wrong/inflamed, I will learn that the feeling that I thought was growth and expansion was in fact a warning signal.  Sometimes, you just don't know that you are hurting yourself.  Sometimes, the very things that you are doing to build strength and to support yourself are the things that hurt.  Yes, I've managed to hurt myself in training -- quite badly, too.  Sometimes, the edge creeps up on you before you even know it's there.  Sometimes, the body is confusing.

More insidious, though, is what I tell myself about these experiences and my commitments.  Why do I over plan?  Overcommit?  If I'm honest with you -- and I'm trying to be -- it's not because I can't say no.  It's because I can't *let* myself say no.  I can't let myself.  Take my self care routine and the way I use assistive technology.  I could do things differently, really, but some of it is that I don't want to be seen that way.  I don't want to be associated with whatever societal judgment I think comes with using a particular technology or with needing to take a break, accept assistance, not do this project.  I load myself up with .... well, I'm not quite sure what.  But I do know that I can't let myself be seen like that.

Here are some examples.  It was very difficult for me to start to use my wheelchair; I could (indeed, can) still execute the movements we call walking.  Why would I want to be defined by the ultimate symbol of disability?  Of powerlessness?  Of vulnerability?  Of .... It felt like giving up or giving in.  I knew what people would say; I knew what I felt.   I'd much rather limp, struggle, deal with pain, decreased mobility, ever shrinking distance, minimal life outside the house, an inability to come and go independently, to stay the course of whatever activity.

I didn't know then about the grey area so many of us live in.  I saw it as an all or nothing situation, and I did not want to be seen like *that.*  I've been in similar conversations with long term manual wheelchair users.  Yes, their shoulders are trashed.  No, they cannot go as far as they could in their earlier years.  Yes, there is pain, fear, ....  but use a powerchair?  It's not an all or nothing situation.  I and they know that.  But how we feel, how we think about these complex moments of transition is one of the contradictions of the disability community.  We have friends who use that equipment; we don't see any difficulty with them using that equipment.  It's just not us.

It gets a little more complicated.  Throughout this blog, I keep writing about how my chair is liberating, how much pleasure I get from using it, how much freedom it offers me.  This is all a fundamental part of my daily life.  But when I hit the dance studio, what I experience in daily life rolls over into art, beauty, power, grace.  I feel limitless; I don't even notice the risks.  I feel invulnerable.  Now, I know that's not true.  I'm always writing about falling; I've had several serious injuries.  But the air in the studio seems different to me.  The limitless of the movement that I can create with my colleagues sucks me in.  It doesn't seem like I am flying hard and/or unreasonably fast; it seems natural.  It feels right.  I don't feel like I'm transcending my limits; I feel like I am growing into my body.  My self.  My place.

In some ways then, this is all a kind of misplaced way of understanding and creating self worth.  One of the challenges of this post is to break that down.  So, here's how it goes.  I am scared of the changes in my body and the changes that might happen to my body.  I'd rather not dwell on that.  Instead, I work to counteract my feelings by developing a sense of self worth that is tied to what I can do and what I have done.  My pride is here; my pride is strong; my pride challenges my fear .... until I fall off the edge.  I then have to reassess and renegotiate.

It's not just me, of course.  I am part of a disability community.  I see/experience a contradiction in my circles.  We talk amongst ourselves about valuing self care, but we don't often practice it.  Without the practice, there are few models.  Without the models, community understanding and discourse are more rare.  In such scarcity, it is easier to force oneself to keep going -- because you don't want to let the community down and you don't want to let yourself down.  And on it goes.

As you've probably guessed by now, I am a rules girl.  I expect things to be, well, like a ruler.  I expect the edges to be flat, orderly, smooth.  I expect the edges to be the things against which you can draw clean straight lines.  I expect.  My language here is important.  Throughout this post, I keep talking about edges as something you fall off.  As imperceptible things that divide you from your ideal sense of self and ideal life.  An edge is risky.  Cutting, indeed.  Sharp like a razor.  Painful, sometimes.  As the post goes on, I am keenly aware that I am not talking about boundaries.  Thresholds.  Dividing lines.  Those somehow seem more neutral; I'm not even talking about being edgy.  That would be hip or perhaps even cool.

No, I am talking about edges, because edges for me associate with free fall.  That's the moment when you lose control over your body, your self (because somehow they are distinct), your life.  Living on the edge, the title of this post, communicates the riskiness, the very unsafeness of life.  My beautiful, joyful life.

Hands On

I am literally trying to get a grip on stuff -- trying to make my hand recover strong, fast, and hard.  Of course,  trying isn't necessarily the best way to do this, but I am at that border line where, after 4 months, my hand is weakened.  I have to get moving.  It has to be strong to support and direct me as I wheel.

And that is where this post is coming from.  As I do the band reps and ball squeezes and newspaper scrunching finger movements, I've been thinking about the value of my hand as I wheel and the difference for my hand between wheeling and dancing.  I've been working to separate my hand from my arm and delicately exploring what my hands do when they aren't simple mobility/locomotion mechanisms.

I like my hands.  I think of them as expressive.  They have years and years of musical training and with all that work came a variety of fine motor skills -- some of which I still have, some of which not so much.  I've noticed that they have aged and that the skin folds and textures appeal to me: When I was younger, I didn't think they would.  I like the way my hands look, though I don't often paint my nails or decorate my fingers with rings.

But I also know that wheeling affects my hands.  It's not just the broken nails and dirt (no, I can't keep my hands on the rims -- the fit of my chair isn't quite right -- and when dancing I like the extra precision of having a hand on the wheel).  It's also the tension and semi-contracture that comes from wheeling.  How to explain.  There's a moment in a one piece where we tip over backwards and lie on the floor, wheeled butts up and arms outstretched.  I'd like to be able to get my hands on the floor and relax in such a way that my fingers touch the floor.  But most of the time, they won't.  They can't.  They are too curled up from wheeling.  In most situations, this isn't a problem.  Some body work and they come back.  But in that moment, my dance is changed.  Instead of feeling outstretched, yet relaxed and supported, I feel myself rising away from the floor.  It's a very different feeling.

So, yes, there is an importance to my hands.  In an earlier, well more like proto, start to this post, I wrote that  "I experience my hands as anchors -- points of stability that rein in my wheels."  I meant that I should begin considering my hands as alive in themselves instead of as intersections between my arm and the wheels.  A wise friend wrote back, putting it much better than I could have: "Anchoring is an interesting way to consider hands when they're often describing the greatest motion and acceleration. What happens to balance and quality of movement if we make hands bases of contact?"

Yes.  Yes.  And yes.  Since then, I've been testing how my hands feel on wheels and rims.  They are no longer passively "describing" or getting dragged along behind the momentum of the wheel.  I have begun to think of them as a person with their own sensibilities and needs.  My grip changes not because a particular action requires a different grip, but because the expression and experience of my hands is changing.  I am beginning to allow my hands to have an expressive quality when they are on the wheel not just while they are striking the wheel or while they are in the air.

This is new stuff.  I hope to be able to test it in the coming weeks as I go back to full time dancing.  Fingers crossed; hands interlocked.

Lady Gaga And The Wheelchair: II

Was it wrong?  Inappropriate?  Offensive?  Yes!  Of course, it was.

You've probably heard by now that Lady Gaga herself rolled out on stage in a wheelchair.  What did that look like?  This!  (Link goes to a google image search in which in several photographs that I don't have permission to reproduce Lady Gaga appears in a dark, mostly unblingy, old style manual wheelchair.  She's wearing dark glasses and a mermaid's tail.)  Apparently, Australian fans disliked what they saw; some threw eggs.  Disability activists also (but probably for different reasons) disliked what we saw; I've never thrown eggs -- some wars are won better with words or with not buying a ticket.

Here's a thought experiment.  Suppose we take Lady Gaga more seriously than, say, Kevin McHale (Artie on Glee).  Yeah, the fame monster is hungry for publicity, and it needs to be fed -- in as many outrageous ways as possible.  Yeah,

Here's what taking Lady Gaga seriously doesn't do.

It doesn't raise the profile of disabled people and encourage our acceptance either in general public spaces or on stage.  Lady Gaga is not disabled in a way that requires her to use a wheelchair.  Lady Gaga rolling around in a chair or using crutches or having a non-disabled dancer use a chair does not materially change our world.  It doesn't raise awareness around disability and disability issues.  It doesn't make people see wheelchairs as positive.  It's just another person sitting in a wheelchair; the only thing that does is assure non disabled folks that it is OK to be in wheelchairs when you don't need them.

Seeing Lady Gaga's representations of disability does not assure people that it is all right to be disabled because disability can be glamorous and sexy.  Everyone knows that Lady Gaga's performance is a stage realization and that for most people (not ruling anyone out here) disability is not really like that.  (I know; not even my glamorous sexy life is quite like that).  In fact, Lady Gaga's disability is so overtop that it harms public acceptance: real disability is almost never like that.  In some ways, the lived experience of disability appears even more unsexy when contrasted with the Lady Gaga image.

We in the disability community aren't really helping ourselves when we make these and other similar arguments.  The weightiness of experience and reality just isn't there.

So, what would it mean to take Lady Gaga seriously?

Here's a nuance.  A nuance, yes, but an important one.  Lady Gaga's disability is not about being disabled, so much as it is an exploration of the moments and ways that one might come into disability -- on stage and/or in the public eye.

In Paparazzi, she becomes disabled before the media; in Sydney, she became disabled before her adoring fans.  (It doesn't matter that she's costumed as a mermaid; I've seen scholarly and web readings in this vein.)  No, to me, it's about creating, testing, staging.  It's not about being disabled.  Lady Gaga's disability is only temporary -- I love Annaham's post about that here.  Her emphasis on the temporary nature of Lady Gag's disability got me rethinking  No, it's not about being and existing as disabled in, say, the same way that Kevin McHale's Artie does.  Or any of the other non-disabled actors who are playing disabled roles.  It's not even about having a disability identity...  It is, for me at least, about performing the moment that one becomes disabled and that, as a non-disabled person, she is uniquely qualified to do.  (I'm indebted to s.e. smith for a really helpful conversation about trying on different identities.)

Over the past couple of days, I've wondered whether or not, this disability exploration might have its roots in Lady Gaga's family history of lupus.  I've spent a while thinking about this.  I've come to think that family history and individual psychology might be a red herring, however; rarely does anyone of us do anything for any one reason or as a linear response to a complex situation.  BUT, more to my point, it doesn't matter whether or not Lady Gaga has disability in her family or whether she herself has a disabling form of lupus.  The point is as a non-disabled person she might, at any moment, become disabled.

How do we come into disability?  What do we do?  How do we respond?  The moment that one is recognized as disabled in the public eye is life changing in so many ways.  How do we present ourselves?  This moment and its consequences are to me what Lady Gaga is exploring.  Looking at newspaper reports, facebook, twitter and blog posts, I find I am interested not in how "unreal" her disability is, but in the reaction of everyone -- including activists like me -- around her.

(My first post on Lady Gaga and wheelchairs is here).

Overcoming And Success: II

Disability challenges what we think we know, as a society, about overcoming and success -- though you would never figure this out from mainstream news media or people on the street.

For the average passerby, success means overcoming your disability.  Whether you've climbed a mountain, pushed a marathon, or simply sipped your coffee, success is yours because you have overcome.  In fact, overcoming is your primary success.  Even if you have climbed that mountain, won a Paralympic gold medal, you will pretty much always have managed to overcome your disability.

I laugh when I think about what people are trying to do here.  Non-disabled emphasis on overcoming is meant to encourage the disabled person, to assure her of her place in the world.  It's meant to show her that she isn't limited by her disability or condemned to a successless/failful life.  It's supposed to bring a disabled person into community and into contact with the "rest" of the world.

But the thing about disability is that you cannot overcome it.  No matter what you do.  You can be successful, yes.  You can deal with it -- successfully, yes.  But you cannot defeat or conquer it.  You might manage to defeat, challenge, even overcome other people's expectations for you and for people with your diagnosis, but whatever it is you successfully managed to do, you did it with and in your body.  Some things take willpower.  More willpower than you ever thought you could have.  But that's not you overcoming your disability.  That's you drawing every last piece of strength and strength you didn't know was there to, say, get out of bed.  To go to physical therapy.  To take your medication, go to counseling, get out on the street, look people in the eye, and/or challenge the prejudice they are confronting you with.  That's you and your disability out there.  Together.

I know this.  At least in theory.  When I can keep hold of it, I know that I do better when I work with what the mainstream world would call my limitations.  I don't see pushing myself and pushing my limits as defeating disability; I experience something like dancing as taking my limitations and exploring them. I'm not overcoming, but moving with.  I know that I work even better when I allow my body to exist without judgment.  I do my very best when I allow what others would judge negatively to become features -- to exist in their own right, without correction.  There is no defeating here; there's only living.  And learning to live in an integrated fashion.

Part I is here.

Falling From The Roller Coaster

This is a heart-rending story about someone whose life was wrongly ended because of the absence of inclusive design and a serious failure to connect disability and design.  It is also a story about how the writing of disability narratives in the media undergirds -- nay, enables --  the absence of inclusive design.  In other words, though on different scales, both the events themselves and the way the New York Post reports them are serious problems.

Sgt. James Thomas returns from Iraq as a double amputee and wheelchair user.  He decides to go to an amusement park and ride the roller coaster.  He checked with a staff person about which rides would be safe for him; he was told they were all suitable.  He fell from the roller coaster to his death because the lap bar and belt could not hold him in.

How did this happen?  Sgt. Thomas placed his trust in the staff at Darien Lake amusement park.  According to the New York Post, Sgt. Thomas asked which rides were safe for him.  MSNBC observes, "People without legs are barred from at least one other coaster at the park, the Predator. Rules posted on the resort's website for the Ride of Steel say that guests must be 54 inches or taller, but add that people with "certain body proportions" may not be able to ride. The website also suggests that guests try using a test seat at the coaster's station house."

Let's just look at that for a second.  Both the Post and MSNBC mention the height requirement.  The Post states that Sgt. Thomas was 3 feet tall.  BUT both fail to understand that a height requirement is pretty meaningless in this situation.  Regardless of height from the hips upwards, Sgt. Thomas' safety depended on appropriate restraints: an "x" belt system across his torso might well have done the job (I'm no safety expert), but a lapbar and belt, no matter what his measured height were always going to be insufficient.

USA Today notes that that double amputees are also barred from the MotoCoaster.  If amputees were barred from the Predator and the MotoCoaster, why did the staff person recommend this ride and why did the ride operator allow Sgt. Thomas on to this ride?  Given those circumstances, how is it possible that none of the staff knew that the ride was inappropriate?

The MSNBC report amentions that "people of certain body proportions" might also be unable to ride.    I'm not sure what this is code for.  Are they talking age, size, weight?  Or is there perhaps a deeper awareness that there is a serious flaw in the design of the roller coaster.  A piece by WFAA News concludes with some of the accident history: A man with CP fell to his death from a similarly designed roller coaster, someone fell from this roller coaster and broke some ribs.

I don't know whether it is possible to design a roller coaster that is universally safe -- i.e., safe for absolutely everyone -- but I am willing to bet that a little more thought about body configurations, restraints, and safety, a slightly more expansive approach to think about who might want to use a roller coaster, would have led to a more inclusive design and a better outcome for everyone who uses this and other similarly designed rides.

Comments on the story run from "he died doing something he wanted to do" to "why would he, as a disabled man, want to do that?" to "Darwin Awards...." to "if they hadn't let him on, he would have cried discrimination."  I am sickened.  But I understand where such comments are coming from: the ignorance and sloppy journalism that continue to reinforce societal prejudice towards disabled people.  Almost every piece I looked at was offensive reading.  But let me stick with the Post for a moment: I found their story first.

The Post skews the story to stir up prejudice and ridicule at every point.  Tabloid journalism style makes lavish use of lurid adjectives.  The first line of the piece? "A rocketing roller coaster sent a legless Army combat hero flying to his death in a tragic accident at a Buffalo-area amusement park."  From the very outset, Sgt. Thomas is made physiologically vulnerable (and perhaps a little laughable) before the technological power of the machinery.  It is not surprising then to learn not that he "fell" -- that would be a serious moment -- but that he "bounced" from the roller coaster.  Boing!  Legless dude! Ha haha.

Readers are treated to the image of an operator who "let" Thomas' nephew lift him into the ride, minutes before the nephew realizes that the lapbar will fail because Thomas "has no lap."  But by then it is too late.  The ride is off -- the action is quick and fast: torpedo, crest, quickly climbs.  Thomas doesn't stand a chance.  His nephew is quoted describing how Thomas "flew" out of the ride and how futile it would have been to try and hold him, even if he could have grabbed Thomas' shirt.  I cannot imagine how this man felt, as he watched his uncle fall.  I cannot imagine the fear and shock and also the powerlessness.  This is not part of the Post's story.  The Post would rather concentrate on the way Thomas' disability informs how others react to the fall.

As the Post reports it, Thomas' disability is as much a horrifying element as the fall itself.  As the rumours of the fall spread, the story is not word of a man has fallen to his death, but one of a "legless" man who has fallen.  Indeed, "Some guy fell off, and he didn't have any legs."  Here, "and" is a coordinating conjunction that suggests that disability is as awful as the fall itself. The Post underscores that point in the very next sentence: it concludes the paragraph with the screams of a "horrified" woman.  Call it bad writing or call it prejudice, but as I see it, it is impossible to tell whether the screams are a reaction to Thomas' disability or a response to his fall.  Indeed, I maintain that Thomas' disability status might be integrally important to understanding how the accident happened and to any future recommendations for safety, but it is not an equal part of the horror.

Other pieces on this story stress Thomas' disability narrative; how hard it was for him to go through rehab.  How difficult it was for him to feel "normal."  Only the Post scores this quote from a family member.  Thomas' sister provides the last sentence of the article.  Her brother, it seems, has gone on to a "better place," one where he can be found "running."

This piece of sloppy writing and others like it are the reason that inclusive design does not seem to be an obvious choice for fairground rides.  Post reporter Candice M. Giove falls into all the old ways of thinking about disability as a tragedy and disabled people as objects of pity.  Then, when systemic ignorance contributes to Thomas' death, the sergeant is portrayed as freakish.  It is not freakish to want to ride a roller coaster.  Sgt. Thomas is not an object of pity; he was a guy on a family trip who just wanted -- like everyone else on that ride -- to be scared and to have some fun.  He'd worked hard to be there; he deserved to ride the roller coaster safely.  And if it wasn't possible, he deserved to know that, too.

Overcoming And Success: I

I've been thinking about success and overcoming.  Growing up, my mother taught me that success -- any kind of success -- was exclusively about successfully overcoming prejudice.  And, in her mind, working for individual achievement was the ONLY way forward.

I stress both parts of that.  She believed that I would succeed if I tried and that by trying I would succeed.  She also thought that success was something I and I alone could earn; neither overcoming or success were about community efforts.  She was able to sustain the contradiction that the world wasn't a meritocracy, but that if I worked, I would be able to do well because I had deserved it.

I think my mother learned this approach from living in  community thinking about success, life, and well-being.  It's a particular kind of self-help, self-advocacy that has taken hold at a grass roots level in places where systemic kinds of help have failed.  Where injustice has influenced the educational systems, employment opportunities, housing, social and moral values.

In some ways, my mother was right.  I did work hard; I did succeed; I developed a killer instinct that I used to squash the competition and to succeed -- by then I called it "win" -- at every opportunity.  She gave me the tools and resources to beat the odds and to "make it" by almost any criterion you care to name.  And as a result of her work, I am in a position to be writing this blog post, to be sitting, thinking about how I got here, what I gave up, and how I can live better.

I can see now, for example, that neither of us was really explicit and, I would say, prepared for the consequences of this approach.  Constructing success as the product of individual work and consequent achievement takes the successful person out of community and isolates them.  I saw my colleagues turn into competitors, I moved 3,000 miles away, I allowed many of my former friends to fall away, I felt I couldn't return to my community -- geographical and personal -- of origin.  So, I didn't.  I haven't.  When I realized where I was, what I had done, and how things had worked out, I started again.

I started again when I realized that, as a disabled person, attempting to overcome any obstacle was not a practical or useful model of being successful.  More on that tomorrow.

The Pull

In this huge therapy journey, I am learning more about my body and my chair.  (No surprise there, I suppose).  I was, however, taken aback to learn more about the pull.  Not *that* kind -- the wheelchair kind.  So much of our everyday vocabulary concentrates on pushing.  Pushing is, for the most part, how you go forward and what you do most of the time.  It's also how other people, for the most part, interact with your chair.  Pulling is somewhat underestimated.

It's taken us a long time to figure this stuff out -- months, in fact.

There are two major kinds of pulls.  The first involves going backwards.  You know the kind?  A straight pull backwards.  In theory, I could/should have known this.  In practice, however, I discovered that I am more lazy than my technical knowledge.

As with so many things, pulling is most efficient if it originates with your shoulder blade.  The general idea is something to do with retracting the shoulder blade and pulling from there.  Both your power and your stability come from the correct meshing of all the muscles that surround your shoulder blade.  That is, of course, much easier to write than to execute.  The shoulder is complicated, strong, and yet vulnerable; something as small as a knot or two might prevent proper function -- never mind the daily abuse that chair users subject our shoulders to. (to which chair users subject our shoulders!)

I'm spending a lot of time with the shoulder here, because it's much easier to pull with your forearm.  And I have been doing that.  A lot.  Much more than I realized.  Part of what I am learning is how to use my shoulder.  How to retract and pull.  AND, even more complicatedly, I am learning how to pull and how to manage the exchange of muscles so that I can reach the outermost point of the pull, breathe, and then begin to push.  That transition, that changeover is really, really hard.

Try it.  And, for that matter, try the reverse.  Try pushing from shoulder blade and then, instead of releasing your arm before pushing again, try keeping it active.  Push, transition, pull, transition, push.  Exhausting.  And complicated.

In the middle of all this, we discovered another kind of pulling, the kind you do when you aren't really thinking about it.  The kind you do when you are stabilizing the chair, checking its direction, steering, slowing, balancing -- I've heard one colleague call it "feathering."  It's the kind you do with what I have been calling your "off hand."  Your offhand stops you from having to push, pull yank.  It enables you to ride smoothly, invisibly correcting a push that went off course; it enables you to counteract the absurd slopes of pavements.  It turns you when your other hand is up in the air or supporting a partner.  Your offhand does a lot of invisible work.

Discovering has made visible and hopefully possible the next stage of recovery.

InTERdependence Day

It's been a month since last I posted.  I have been fighting hard to get my body back in shape.  The pain and fear have taken a huge toll; I neither had the energy to post, nor did I want my blog to be about that.  I know that I've been writing about it since March, but the daily stuff?  the ins and outs?  No.

In the disability circles, I know best, people have been wishing each other Happy Interdependence Day.  Independence brings one kind of freedom; interdependence, I'd say, brings another.  I hope some mix of the two furthers the causes of justice throughout.