My fantasy lawsuit
I enjoyed Lisa Blumberg's article on "Reproductive Technology and
the Threat to Diversity" ("The Bad Baby
Blues," July/August). Blumberg hits all the important and troubling
issues surrounding genetic counseling and discriminatory abortion.
I'm an attorney with a disability rights firm in Denver and write to
add a comment from the civil rights perspective: That which one can do
legally (firing an employee) can be illegal when done for a discriminatory
reason (firing an employee because she's African-American).
By the same logic, even though abortion is legal, aborting a fetus because
she/he/it is disabled should be illegal under laws prohibiting discrimination
on the basis of disability. There is no question that this practice has
a disparate impact on the lives of people with disabilities.
The chief legal problem is that there is no one with standing to bring
the case: all of the potential plaintiffs are, by definition, dead - and
their parents, who elected this course, cannot be relied upon to represent
the interests of their (potential) offspring. Naturally, the U. S. Attorney
General could sue, but that is unlikely in this administration. My fantasy
lawsuit is brought by an enlightened state attorney general against a hospital
or clinic under the ADA or Rehabilitation Act for disability discrimination
through genetic counseling and discriminatory abortion.
Fox & Robertson, P.C.
As the mother of a four-year-old daughter with Down syndrome whom I
was pressured to abort after prenatal testing, I applaud the articles you
have chosen to publish ("A Paean to Eugenics"; " The Bad
Baby Blues"). I was already familiar with the eugenicist websites
Mary Wilt wrote of; they sickened me just as they did her.
Along with a few other parents, I help maintain a website devoted to
educating parents-to-be about children with disabilities, and to encourage
them not to abort their unborn children due to "birth defects."
To access our website, please go to: http://www.angelfire.com/
Thank you again for two wonderful articles!
PRENATAL DIAGNOSIS: Information & Personal Stories Website
Sonogram was wrong
We were told by numerous sonograms that our baby had Down syndrome,
and also had hypoplastic left heart. They sent me home to make funeral
arrangements for after the birth, or to decide to "Interrupt"
at month seven.
Katie has only a murmur. The sonogram was wrong. She has Down syndrome
and is a wonderful gift to our family. I teach music in two schools with
a large population of Down syndrome children. They are the joy of my week.
I don't have the heart to look at any of the suggested websites. These
parents don't know the joy they have robbed the world of.
Don't get me wrong: Katie has had her share of the medical world - 20
surgeries, mostly esophageal and intestinal, but it's all fixed now and
she is eight. If the parents felt they could not deal with raising these
children, there are many who would have been glad to adopt these babies
and not rob them of the life that was started. My best friend is single
and has adopted 2 children with Down syndrome.
I just wanted to extend my praise to her for such a well-written and
accurate article. Thank you for publishing it.
A 'horrid crime' - and a birthday party
I was born with Ehlers-Danlos Syndrome (EDS) and developed Fibromyalgia
Syndrome (FMS) about the age of 10. Under Missouri and federal definitions
both my sister and I are "developmentally disabled."
A lot of people opposed my married sister's planned pregnancy last year
as a horrid crime - due the possibility she could pass her "defective"
genes on. Rachael has EDS, FMS, Hashimoto's hypothyroid disorder, reactive
hypoglycemia and malignant hyperthermia. (She jokes that we were born in
the shallow end of the gene pool with the sharks. They had to do an emergency
C- Section seven and a half weeks early to save her life).
Yesterday I went to Andrew's first birthday party. He would have a loving
and understanding family if he did have EDS, but he is one of the healthiest
children I've ever seen. Since they had prepared for a child with disabilities
and got a healthy, non-gimped, blond-haired, blue-eyed Aryan baby, now
they are talking about trying to adopt a little girl with EDS from Russia.
Heather De Mian
Not the Reeve Foundation I know
I read with interest Mary Johnson's "A Summer Exercise for the
Imagination" (July/August), as well as the story on Christopher Reeve's
interview with Greg Smith of On A Roll ("D.R. Nation," July/August).
I'd like to believe Reeve is not trying to mislead people when he said
that "30 percent of what we take in we give to, uh, groups, um, to
enhance the quality of life." I wonder if this was an overt attempt
to silence his critics or mislead the disability community? Was he referring
to the National Organization on Disability, or his Christopher Reeve Foundation?
I seriously doubt he was referring to the Reeve Foundation. I contacted
them seeking funding for my academic research on the social situation of
disabled people; I received a polite but firm letter stating that the goal
of the Reeve Foundation was the CURE for paralysis (emphasis theirs), and
that work such as mine would not be considered.
If Mr. Reeve is truly interested in forging a closer association with
the disability community, he needs to broaden his horizons. His total focus
on cure, while personally satisfying, will not win him friends among disability
rights activists nor those who are struggling to make ends meet.
William J. Peace
Wants contact with other homeowners on Medicaid
I am a working person on Medicaid. I have CP and use a wheelchair. I
rely on Medicaid for personal aides.
I have been working at my job for 20 years; I own a very modest home,
complete with a morgage and other expenses. I, along with many others must
pay Medicaid a repayment or spendown; I pay $280.00 per month. I live
in Buffalo, NY area and am trying to get in touch with other working disabled
homeowners on Medicaid.
I have contacted my local ILC and area Medicaid experts, with no luck.
I know there must be other,who have faced the same problem. I have not
found anyone to talk to about this issue. I feel very isolated and frustrated!
I have worked very hard to keep my home.
Please contact me by mail at: PGR-SW@webtv.net
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