Re: MDA

Valerie Brew-Parrish (brew-parrish(AT)juno.com)
Sun, 19 Oct 1997 10:46:39 -0500

kEVIN,
I thought your comments were well spoken about MDA putting too much money
into research. When I was 15(many moons ago) I met a girl at camp named
Hutch. She had MD and we became close friends. Like many disabled persons
that the public doesn't know about, Hutch was rejected by her biological
mom and family. All she wanted was an electric wheelchair and to go to
school. MDA refused to buy her a chair. When I returned from camp, I
called MDA and begged them to buy her an electric chair. I also begged my
family to let Hutch live with us so she could go to school. I was stopped
on both counts. My dad had 13 strokes before he died. My mom couldn't
take care of the 3 of us. Anyway, I was furious with MDA for not helping
my friend. I think that's when I first became an activist. I started
writing letters to the Chicago newspapers to get Hutch a wheelchair. I
was successful. By this time though, she had been placed in a nursing
home. SHE HAD A DISABILITY; SHE WASN'T SICK. Why can't people know the
difference? Over the yrs. I lost touch with Hutch. Many of my closest
friends had MD. I went to elementary, high school, and college with
"Jerry's Orphans." Lewis actually tried to sue Mike & Chris for
protesting his sanctimonious telethon. He claimed they were never poster
children--they were! Lewis & his honchos tried to threaten them by saying
Mike & Chris were responsible for pledges not coming in so MDA would stop
the MDA camps. Lewis tried to get the late Evan Kemp (disability activist
and person with a form of MD) fired from his post as EEOC Commissioner
because of an article Evan wrote stating his feelings against the
telethon. I organized a letter writing campaign to George Bush to keep
Evan at his job! Then, a few yrs. back, many MDA Chapters didn't want to
pay for people's vents! I am assuming that situation got resolved. When
Diane Piestro (Disability writer with M.S.) kept questioning where all
the millions collected go, Lewis got many of her newspaper syndications
pulled. You hit one of my hot spots about MDA. I agree with you. Too much
money for the cure and for their executives and not enough to help the
people living with MD!
Val