Post by Joanne MarinelliPost by PerfectlyAblePost by JoBPost by sam7i5erotdkhgcxThey came first for the disable,
and I didn't speak up because I wasn't disable.
Then they came for the poor and homeless,
and I didn't speak up because I was not poor or homeless.
Then they came for those with mental problems,
and I didn't speak up because I did not have and mental problems.
Then they came for the Gays,
and I didn't speak up because I wasn't Gay.
Then they came for me,
and by that time no one was left to speak up.
http://novus-ordo-seclorum.us/2007/01/ashley-treatment-they-treat-ashley-like.html
http://novus-ordo-seclorum.us/2007/01/ashley-treatment-and-united-nations.html
"An American couple have had doctors stunt their disabled nine-year-old
daughter's growth in the hopes of keeping her small enough to enable
them
to
care for her."
That is not only wrong, IMHO, but just plain old bizarre.
Worse, people will stop aborting their disabled foetuses and start
modifying them to suit their lifestyle. The country that brought
us trophy wives, now brings us token children. oh, look
how caring we are, we've stunted our disabled child. Now our
child who only knew a life of disadvantage, of disappointment, of
never matching up, can also be 'managable' and 'contained' like
some prisoner, locked in a childs body for life. We trusting that
their residue IQ ability never realises what they've missed.
"Why mommy don't I ever grow old?". Field that! Its not
bizarre its sick. We have abortion for a reason to end tortured
lives, tortured by the goodness of dogooder parents.
What do we have to say told you so when they finally find
some women purposefully stunting their unborn child so
they can also have a token child!
I have to learn more before I can condemn the parents entirely, sorry. Kelso
made national headlines nearly eight years ago, because his parents
abandoned him due to the severity of his cerebral palsy--and that is a
condition most of us are more familiar with.
I understand the activist suspicion of medical model control, but I also
understand the strain on caregivers who care for the disabled. I broke off
with my fiancé in part because he opened my eyes to the enormous strain
caring for him placed on me, when I am a wheelchair user myself with four
limbs affected.
Disability discrimination is not equivalent to racial discrimination. Some
of us can matriculate better than others, some can't, and the ethics
surrounding this as we approach the limited cognitive status of a child like
Ashley are never easy.
I am not saying I have the answers, but outrage is not likely to win anyone
over. As to abortion, I believe in a woman's right to make her own
decisions, and as sad as it is, the human animal is not meant to survive
every disease thrown at it to keep it in check.
And I have to say, I am 44, and tired of constantly fighting ableism and its
systems. I am smart, and I have achieved a few things I am not ashamed of,
but increasing vulnerability looms as I age--and I don't know, if I could go
back, if I would have respected my parents decision to have me and my
sister. She is long dead, due to multiple systems failure, and she suffered
22 years for literally no reason, and my mother was right to let her go the
last time she was code red. Like thousands of others, she was a Terri
Schiavo no one knew about except her family.
There is no black and white here folks.
Choice comes with risk, risk with mistake and bad
outcomes. The pernious nature of 'monotheism'
declaring both that the world can be ideal, that
there is a clear black and white map we can place
on the universe, is at the corner stone of the problem.
We all live have to say sorry we don't live up to perfect.
Sad. Really Sad. But religion is politics, control for
those who feal they lack it. America by being so
monotheist has less grasp of the shades of grey
that when it does leap into this terroritory it leaps
far and without much consideration.
But getting back to the idea that a child should
have their already limited experience, their potential
experiences curtains out of fear (of rape which could
still happen), and the loss of experience of puberty
and adultness, is I have to point out wrong. We stopped
treating disableness like a disease, now we're supposed
to start up again?
I am not trying to be an advocate for the parents Able. The evasive
procedures were aggressive, but activists just don't stop to think
sometimes, and are too reactionary. Parents are *the enemy* and yet the
disabled supervisor who confided that to me humilated me and immersed
herself in institutional self-justification rather than deal with the
injuries she inflicts on disabled subordinates. Medical model control is
bad, but we're all alive thanks to medical model advances.
Parents, just like anyone else, are human, and I am not ready to brand these
people as criminal.
No activists are running to my rescue to help me stay viable. The subtext
they follow is: going home to my family is best at this point. No it's not.
It is just the best in a series of limited choices. I will have to skirmish
with my family to maintain a modicum of independence when I leave the city,
just as I have to skirmish with my transit authority and landlord now. What
happens when I get too old to transfer myself and the like? People like you
and Joetta will say "oh, sorry things are so tough."
Yet you go screaming when cognitively dead people like Schiavo get the plug
pulled on them so they can truly arrive at cessation in peace.
Not all things about activist ideology is wrong. But some of it is just a
contradiction in terms-- maybe thinking about Ashley's long term care isn't
necessarily a bad thing.
Joanne