Monday, January 26, 2009

TheDisabilityShow 0001

TheDisabilityShow 0001

Disclaimer! Disclaimer! Disclaimer!

This show is "not" any kind of a medical podcast.

It is by and for the disabled, and if we can help reach across the chasm of questions and indifference to the other side of the rainbow of ability ... well and good.

Its purpose is to keep us entertained, to explain our symptoms, to remark on our discoveries, and to raise the general consciousness about our disabilities.

The path to disability is shadowy, murky and rough strewn.

The path to wellness is lit by the lamp of knowledge.

---- "Wake Me Up When September Ends" by: "Green Day" http://www.greenday.com/splash_black.php?accesscheck=%2Flogin_check.php

Intro

This show is a chance for students at St. Peter's College to both learn about disability, the concepts and the realities of disability, as well as to teach about disability, by exposing the audiences, both on the campuses of St. Peter's College and on the world wide web, to the problems faces by 5% of the population (That's "325,000,000" [three hundred and twenty five million] people, one in twenty people on the planet alive today, right now, that the W.H.O. [the World Health Organization] estimates fits their definition of disability.)

---- "Wake me up when this Math Class Ends" by: "The FuMP" http://www.thefump.com/

Thesis:

As the title of the show might give a hint, we're here to expose people to the, uh, wonderful world of the disabled. (Though the wonder might be limited on one side by "Hunh? What? Why?" and the other side "Oh, give up man. They'll never get it." [I'm just being polite. The epithets that are sometimes applied by both peoples to the ones standing on the other shore are not fit for dissemination.])

Seeing as how this is an institution of higher learning and people have to meet certain eligibility requirements to get here, its a self-selecting kind of elite who get to be students here at St. Peter's.

We represent the plus side of the bell curve as far as IQ goes.

Yet we struggle with the same question of "otherness" that any disabled person faces; that blank stare, that uncomprehending look that says "What do you people want anyway?" not recognizing that what we want is "not to be thought of in that way."

---- "When The World Ends"{ by: "Dave Matthews Band" http://www.davematthewsband.com/

Synthesis:

Actually the introduction to this show touched on one point, (the statistical,) while my thesis touched on one other point, (the existential,) that are two sides of the same coin.

Being one person in twenty yields a formidable number, three hundred and twenty five million people on the aggregate are disabled to some degree spanning the range to having a mild "kink in the armor", to having a "thoroughly bent frame".

The problem is that disease and disability manifest themselves in myriad ways and we, all to human beings, immediately begin to subdivide the concept of disability into the prevalence of each.

Its one thing to know that the prevalence of MS affects in in twelve hundred people, or 0.0833% of the population, or a mere 2.9 million people (see how putting an actual number, as long as its a cognitively grokable one*, puts a volume of people behind a mere statistics,) its another thing to be prepared to deal with the varying degree of disability that MS can bring.

(* Grokable numbers are those related to things we can understand. Otherwise, our imagination fails us and we can't really grok, or holistically comprehend the entirety of the concept. Like drops in an ocean [or even in a bucket,] things get confused into a blur)

---- "Boys & Girls" by "Blur" http://www.blur.co.uk/

We're "all" different and we "all" suffer from and labor under differing degrees of disability.

Some people are not visibly affected by it, as I wasn't for the thirty years from sixteen when my hand writing went to hell and my manual dexterity was shot through with tremors, to my last attack in 1997 when my mobility was affected and I was left using a cane.

My first guest suffers from "Coeliac disease" [ http://en.wikipedia.org/wiki/Celiac_disease ] which while incurable can be controlled by dietary means.

Some people are handicapped as the result of some traumatic injury, some insult to the system which leaves them unable to fully function.

Some, like me, are handicapped as the result of some disease which leves them unable to fully function.

The truth of it is that none of us wanted whatever happened to us to happen, but shit did indeed happen, to us.

But that doesn't mean that we've given up or that we're fit to give up on.

There are some things which can be done which make our lives easier, and incidentally can make everybdy else's lives easier as well. (And I definitely want to adress the PATH system's policies of sticking handicapped ramps and the station's elevator out of the way and in difering places in every accessible station as particularly deserving of my oprobrium, invective and venom.)

---- "Old Friends/Bookends" by: "Simon & Garfunkel" http://en.wikipedia.org/wiki/Simon_and_Garfunkel#External_links

Conclusion:

I hope that this show inspires us through our own example.

Disability is existential and experiential.

We "all" suffer from some delusions of perfection and we sometimes feel shame at not reaching the ideal of physical beauty or functionning.

Its what keep the plastic surgeons employed after all.

For the most part the entire cosmetic industry is entirely fueled by the hopes that whatever deception we weave before the eyes that behold us can last ... long enough. (Ha! As Shakespeare wrote "What fools these mortals be".) [ http://www.enotes.com/shakespeare-quotes/lord-what-fools-these-mortals ]

The worst part is when the disabled are not accommodated as part of making the traffic flow better for everybody, but are instead shunted aside and forced to be an inconvenienced inconvenient.

---- "Family And Friends" by: "Rob Szabo" http://www.robszabo.com/

Part deux (brings me back, doesn't it.)

I am going to try to bring somebody into the studio with some form of disability every week.

I have some one lined up to speak on Celiac disease.

Just like I have my "bona-fides" with MS, my guest has the same qualification to speak on and about Celiac disease.

We're "not" medical experts, we're the afflicted/affected.

Take it away and ... "educate me" ...

[ I'll get his transcript later ]

3 comments:

pb said...

Yahoo! Let no one believe what they feel, for feelings are not facts.

When the disability hits, that may be only for a day, or for a lifetime, but it doesn't mean we can't try.

Doctors told me I would be in a wheelchair. They may still be right, but it hasn't happened yet, even though I am constantly told (nag, nag, nag) that my MS is progressive and progressing.

So I use the walking stick, or cane, or hold onto the walls and railings, but I keep going.

Ain't nobody gonna slow me down till I'm gone.

Great show!

Charles-A. Rovira said...

Amen PB. Amen.

"Feelings, nothing more than feelings...

Somehow, I don't think MS is quite what "Dobie Gray" had in mind when the song was written ... but with MS, half of the effects of the disease are, uh, felt there.

The other half is of course spasticity; which is what screws up our coordination (and makes us need special shoes, canes, wheel chairs, etcetera.)

Are you listening to the podcast or are you just reading the show (here or on msb.libsyn.com, or on MSBPodcast.com [and soon to be on the website of St. Peter's College http://pauwwow.com/ ? ])

LISA EMRICH said...

Hi Charles,

Breaking news today...

The Health Central Network has purchased Wellsphere.

http://www.thehealthcentralnetwork.com/news/20090128.html

Lisa