The Progressive Disability Perspective

[Guest guest]

http://www.alternet.org/story/21624/

 

The Progressive Disability Perspective

 

By Josie Byzek, AlterNet. Posted March 30, 2005.

 

When looking at the Terri Schiavo case, I ask my fellow progressives

to tweeze the disability perspective out of the culture war rhetoric

of either " life at all costs " or " better dead than disabled. "

 

It's been a hard week for disability rights activists like me who have

strong feelings about Terri Schiavo's situation. Personally I am

shocked that the revulsion I feel about how lightly the president and

the U.S. Congress hold our Constitution isn't universally shared by my

fellow disability rights activists, most of whom, like me, are

card-carrying members of various progressive organizations. Some of my

colleagues want to " save Terri at all costs, " but I don't think

anyone's life is worth even a ding on the U.S. Constitution.

 

There has been a lot of dialogue in the disability community this

week, though, and that painfully open dialogue has helped me frame how

I understand what I think needs to happen next regarding situations

like Terri Schiavo's.

 

I have personally known people who were thought to " not be there " who

suddenly dropped in. The first time was back in 1990 when I worked at

the center for independent living in Pittsburgh. We had a contract to

get severely disabled people out of institutions and there was this

one guy they'd park across from my desk ... talk about vacant stares.

I always said, " Hi, Henry, " when I saw him and one day he said " hi "

back. I jumped and spilled my coffee. That was the first time I saw

how wrong we can be about whether severely cognitively-disabled people

are " there " or not.

 

My experience with Henry is practically a rite of passage in the

disability rights movement and hopefully explains why many of us don't

think non-disabled people know enough about our lives to determine

whether we should live or die. It was non-disabled medical

professionals who told our agency not to waste time with Henry, as he

wouldn't know anyway. Our agency was owned and operated by disabled

people at the time – all the top management positions were held by

people with such significant disabilities as spina bifida and

blindness – so they knew to set aside what the non-disabled medical

professionals thought about such people as Henry.

 

Hopefully this anecdote shows how our movement's perspective developed

around the issues raised by the Schiavo case. It is a unique

perspective, and one that I think is more in line with the progressive

camp than the anti-choice camp. The problem is our perspective looks

very similar to the anti-choice stand. The main difference is

anti-choicers say " life at all costs " and we say, " don't assume our

lives aren't worth living. " Please note the difference.

 

I'd say the majority of us in the disability community who support

disability rights activist group Not Dead Yet's (NDY) positions are

pro-choice. Many of us are gay or lesbian, including some in NDY

leadership roles. Many are atheist or agnostic. Who we are

collectively ought to be enough to differentiate NDY from the pro-life

camp. But it seems – seems, I'm not sure this is accurate – that

progressive groups are so locked into the debate as defined by the

anti-choicers that they're not willing or are unable to give weight to

our perspective on these issues in their internal policies. Even

though these issues primarily affect our community more than any other

group of people.

 

Personally I don't think we try hard enough to articulate our

perspective to progressive leaders. I think this is because it puts us

in the uncomfortable position of defending our lives. But then along

come these anti-choicers who learn our lingo and dance our dance steps

and it gets even more confused.

 

I was invited to speak at a " Save Terri " rally in Central

Pennsylvania., along with Pennsylvania's pro-life leader and my

choices were a) speak and get the NDY perspective in or b) NOT speak

and NOT get the NDY perspective in. So I went. The leader of national

NDY was even more concerned than I was about me speaking at the same

venue as a prominent anti-choice leader, but we worked on my remarks

and thought we found a good balance. But I still worry that anyone who

caught the coverage went away thinking NDY is allied with anti-choice

groups, and that we share a common perspective, which we do not. I'm

sure you see the dilemma.

 

So what do I think about Terri Schiavo's situation? I think the

Schindlers' pain led them to become anti-choice patsies and their

advisors ought to be ashamed of themselves for how they've used that

family's anguish to push their political agenda. I think Mike

Schiavo's probably a stand-up guy, very much like the working-class

men in my own family. I've not seen anything credible to suggest he's

the wife abuser some propagandists make him out to be and I've seen no

credible proof that he wants Terri dead " for the money. " I wish

Michael had divorced Terri and let Terri's parents take over. That

didn't happen, and in the end, despite the typically reckless actions

of this president, the law was followed. But the law was followed

using tainted data; the common assumption that people as seriously,

severely and completely disabled as Terri would certainly not want to

live.

 

I ask my fellow progressives to tweeze the disability perspective out

of the culture war rhetoric of either " life at all costs " or " better

dead than disabled. " Don't let the right wing continue to frame this

issue and instead help us articulate the nuances of our perspective in

the public debate.

 

Specifically, there will be agitation for changes and overhauls to the

guardianship laws in our nation and in our states. I ask any of you

who follow this kind of thing to set aside all framework of

pro-life/pro-choice and instead help us stamp these laws with the

progressive value of self-determination. Help ensure these laws

reflect the disability community's perspective. Otherwise I shudder to

think what may happen.

 

Josie Byzek can be reached at josiebyzek

[Guest guest]

Hello,

 

I think Selfdetermination is valuable, indispensable.

The problem withthe policy of selfdetermination is that it is not

supported by mainstreampolicy.

I am a target otMindcontrol technology and hear for instances

voices. One is: What is not useful is not accepted by us. It must be

useful.

How disabled people all over the world in maisntreamcontrolled

countries particularly are treated seems to confirm this sentence.

To walk to selfdetermination is right but it is against the ruling. At

least many will not approve this easyly.

 

Randolf

 

disabled because of mental problems

 

 

, " califpacific "

<califpacific> wrote:

>

>

> http://www.alternet.org/story/21624/

>

> The Progressive Disability Perspective

>

> By Josie Byzek, AlterNet. Posted March 30, 2005.

>

> When looking at the Terri Schiavo case, I ask my fellow progressives

> to tweeze the disability perspective out of the culture war rhetoric

> of either " life at all costs " or " better dead than disabled. "

>

> It's been a hard week for disability rights activists like me who have

> strong feelings about Terri Schiavo's situation. Personally I am

> shocked that the revulsion I feel about how lightly the president and

> the U.S. Congress hold our Constitution isn't universally shared by

my

> fellow disability rights activists, most of whom, like me, are

> card-carrying members of various progressive organizations. Some

of my

> colleagues want to " save Terri at all costs, " but I don't think

> anyone's life is worth even a ding on the U.S. Constitution.

>

> There has been a lot of dialogue in the disability community this

> week, though, and that painfully open dialogue has helped me

frame how

> I understand what I think needs to happen next regarding situations

> like Terri Schiavo's.

>

> I have personally known people who were thought to " not be there "

who

> suddenly dropped in. The first time was back in 1990 when I worked

at

> the center for independent living in Pittsburgh. We had a contract to

> get severely disabled people out of institutions and there was this

> one guy they'd park across from my desk ... talk about vacant

stares.

> I always said, " Hi, Henry, " when I saw him and one day he said " hi "

> back. I jumped and spilled my coffee. That was the first time I saw

> how wrong we can be about whether severely cognitively-disabled

people

> are " there " or not.

>

> My experience with Henry is practically a rite of passage in the

> disability rights movement and hopefully explains why many of us

don't

> think non-disabled people know enough about our lives to

determine

> whether we should live or die. It was non-disabled medical

> professionals who told our agency not to waste time with Henry, as

he

> wouldn't know anyway. Our agency was owned and operated by

disabled

> people at the time – all the top management positions were held by

> people with such significant disabilities as spina bifida and

> blindness – so they knew to set aside what the non-disabled medical

> professionals thought about such people as Henry.

>

> Hopefully this anecdote shows how our movement's perspective

developed

> around the issues raised by the Schiavo case. It is a unique

> perspective, and one that I think is more in line with the progressive

> camp than the anti-choice camp. The problem is our perspective

looks

> very similar to the anti-choice stand. The main difference is

> anti-choicers say " life at all costs " and we say, " don't assume our

> lives aren't worth living. " Please note the difference.

>

> I'd say the majority of us in the disability community who support

> disability rights activist group Not Dead Yet's (NDY) positions are

> pro-choice. Many of us are gay or lesbian, including some in NDY

> leadership roles. Many are atheist or agnostic. Who we are

> collectively ought to be enough to differentiate NDY from the pro-life

> camp. But it seems – seems, I'm not sure this is accurate – that

> progressive groups are so locked into the debate as defined by the

> anti-choicers that they're not willing or are unable to give weight to

> our perspective on these issues in their internal policies. Even

> though these issues primarily affect our community more than any

other

> group of people.

>

> Personally I don't think we try hard enough to articulate our

> perspective to progressive leaders. I think this is because it puts us

> in the uncomfortable position of defending our lives. But then along

> come these anti-choicers who learn our lingo and dance our dance

steps

> and it gets even more confused.

>

> I was invited to speak at a " Save Terri " rally in Central

> Pennsylvania., along with Pennsylvania's pro-life leader and my

> choices were a) speak and get the NDY perspective in or b) NOT

speak

> and NOT get the NDY perspective in. So I went. The leader of

national

> NDY was even more concerned than I was about me speaking at

the same

> venue as a prominent anti-choice leader, but we worked on my

remarks

> and thought we found a good balance. But I still worry that anyone

who

> caught the coverage went away thinking NDY is allied with anti-

choice

> groups, and that we share a common perspective, which we do not.

I'm

> sure you see the dilemma.

>

> So what do I think about Terri Schiavo's situation? I think the

> Schindlers' pain led them to become anti-choice patsies and their

> advisors ought to be ashamed of themselves for how they've used

that

> family's anguish to push their political agenda. I think Mike

> Schiavo's probably a stand-up guy, very much like the working-class

> men in my own family. I've not seen anything credible to suggest

he's

> the wife abuser some propagandists make him out to be and I've

seen no

> credible proof that he wants Terri dead " for the money. " I wish

> Michael had divorced Terri and let Terri's parents take over. That

> didn't happen, and in the end, despite the typically reckless actions

> of this president, the law was followed. But the law was followed

> using tainted data; the common assumption that people as

seriously,

> severely and completely disabled as Terri would certainly not want to

> live.

>

> I ask my fellow progressives to tweeze the disability perspective out

> of the culture war rhetoric of either " life at all costs " or " better

> dead than disabled. " Don't let the right wing continue to frame this

> issue and instead help us articulate the nuances of our perspective

in

> the public debate.

>

> Specifically, there will be agitation for changes and overhauls to the

> guardianship laws in our nation and in our states. I ask any of you

> who follow this kind of thing to set aside all framework of

> pro-life/pro-choice and instead help us stamp these laws with the

> progressive value of self-determination. Help ensure these laws

> reflect the disability community's perspective. Otherwise I shudder

to

> think what may happen.

>

> Josie Byzek can be reached at josiebyzek@p...