Disability & Society

Disability & Society

Case Scenarios Spring 2007

I) Listserv inquiry

Hello,
I looking for some opinions and input from my blind
friends out there. My husband and I are currently
having to make a decision about my daughter Elliana (8
months old) We have yet to see a specialist(an
ocularist?) but i am curious what you all think. My
daughter was born with micropthamlia(small eyes) and
many other eye problems and at very best they think she
may have light perception but really believe she'll be
100% blind. Because her eyes are small they aren't
putting the proper pressure on her surrounding facial
bones as she grows. As totally and only a cosmetic
issue, they want to know if we want to put spacers in
her eyes to help her eye sockets and surrounding facial
bones grow. She could eventually get false eyes(just
the kind that cover her own eyes) if she wanted. But we
have to decide now cause between 1 and 2 years old this
part of your face grows alot and fast. These spacers
are clear so light can get in and have to be replaced
and fitted with bigger and bigger ones( don't know all
specifics of it yet) My question is would you do it?
It's totally cosmetic. And even then her eye area will
always look small or a little differnt. Do I want to put
her through all of this just so she'll look "normal"? Or
do you think looking as normal as possible will be
really important to her? Has anyone out there had
spacers as a child? Or false eyes? Any comments would be
helpful.
Thank you,
Susan

Disability & Society

II)

From the BBC:Monday, 8 April, 2002, 10:11 GMT 11:11 UK
Couple 'choose' to have deaf baby
A lesbian couple in the US have provoked strongcriticism by deliberately choosing to have a deaf baby.
Sharon Duchesneau and Candy McCullough, who haveboth been deaf sincebirth, were turned down by a series of sperm banks they approached lookingfor a donor suffering from congenital deafness.
The couple, who have been together for eight years,then approached a family friend who was totally deaf, and had five generations of deafness inhis family.
He donated sperm which was used to impregnate Sharon Duchesneau.
Baby Gauvin McCullough is now four-months-old, and has a slight amount ofhearing in one ear.
The couple have said they will let him decide when he is older if he wants to wear a hearing aid.
The man has already donated sperm for the couple's five-year-old daughterJohanne, who is profoundly deaf and can only communicate through sign language.
Bonding
The women, both in their 30s, are part of a growing movement in the US which sees deafness as a cultural identity, not as a disability.
While she was pregnant, Ms Duchesneau said: "Itwould be nice to have adeaf child who is the same as us.
"I think that would be a wonderful experience.
"You know, if we can have that chance, why not take
it?
"A hearing baby would be a blessing. A deaf baby
would be a special blessing."
The women, from Bethesda, Maryland, are both mentalhealth therapists and deaf therapists.
They told the Washington Post they believed theywould make better parents to a deaf child, because they would be better able to guide them.
They say their choice is no different from choosingwhat gender the child would be.
Ms McCullough added: "Some people look at it like'Oh my gosh, you shouldn't have a child who has a disability'.
"But you know, black people have harder lives. Whyshouldn't people be able to go ahead and pick a black donor if that's what they want?
"They should have that option. They can feel related
to that culture, still bonded with that culture."
Reaction
Stephen Rooney, spokesman for the British DeafAssociation, told BBC News Online: "The real issue is not whether people are trying to design deafbabies, but how society currently denies deafchildren to enjoy the same rights, responsibilities, opportunities and
quality of life as everyone."
But the couple's decision has attracted fierce criticism.
Peter Garrett, research director for LIFE, told BBCNews Online: "This is another example of reproductive technology running riot.
"To deprive a baby of a natural faculty is unethicalbehavior."
He said the principle could be extended todeliberately having a baby which was blind, or a dwarf.
"We are saying no to deselecting a baby because itis deaf, and no to deliberately choosing to have a deaf baby."
But Dr Richard Nicholson, editor of the Bulletin ofMedical Ethics, said: "This is an inevitable result of deciding that we allow people to have achoice over what sort of child they are going to
produce."
Dr Vivienne Nathanson, head of science and ethics atthe British Medical Association, said: "There are two sides. In general, is this a good or a bad thing? I think most people would say it was a bad thing.
"But in this individual case, I think this is on theborderline of concern about the 'slippery slope' of designer babies."
Nancy Rarus, a member of staff at the US National Association for the Deaf said: "I can't understand why anybody would want to bring a disabled child into the world."

Disability & Society

III) Teddy bear flap could become business school case study By David Gram, Associated Press | February 14, 2005
MONTPELIER, Vt. --W. Michael Hoffman says he might use the controversy generated by the Vermont Teddy Bear Co.'s straitjacketed "Crazy For You" bear as a case
study in one of his graduate seminars on business ethics.
"Even though it has that kind of cutesy flavor, it brings up issues about corporate behavior and how corporations should be sensitive and interact with society," said the director of the Center for Business Ethics at Bentley College in Waltham, Mass.
The decision to market the bear, and to keep doing so even in the face of widespread criticism that its straitjacket and "commitment report" made it insensitive toward people with mental illness, has put the Shelburne-based company under the spotlight among business ethicists and public relations executives around the country.
Among the question he would ask students, Hoffman said, would be, "Does the company need to be more sensitive? ... Does the fact that the bear sold out mean you were right to put it on the market?"
The company began advertising the "Crazy For You" bear in early January. When mental health advocacy groups raised an alarm, the company responded by saying it was sorry if it had offended anyone, but would continue selling the bears until its inventory sold out.
As the pressure built, with scolding both from Republican Gov. James Douglas and the state Human Rights Commission, the company stuck to its guns.
A company official did not respond to messages requesting an interview with CEO Elisabeth Robert. Robert, whose name is pronounced "ro-BEAR," gave a round of media interviews on Jan. 29, during which she said it was "a very difficult decision" not to withdraw the bear from the market.
"I listened to customers, from a lot of feedback from our employees. These people are Vermonters who really don't like to be told what to do," Robert told The Burlington Free Press.
That didn't score any points with the company's critics, some of whom said Robert had gotten a distorted view of the message they were trying to send.
"No one's trying to tell them what to do," said Rep. Anne Donahue, R-Northfield, who has struggled with serious depression and is a leader of the group Vermont Psychiatric Survivors. "We're not demanding; we're pleading."
The controversy appears not to have harmed sales: The "Crazy For You" bears sold out last week. But there has been a personal cost to Robert. She gave up her seat last week on the board of Vermont's largest hospital, Burlington-based Fletcher Allen Health Care after both the board chairman and its CEO said disparaging the mentally ill is contrary to the mission of institution that serves them.

Disability & Society

IV) Fetal Surgery for Spina Bifida

Fetal surgery itself is a relatively new procedure with only a few hundred attempts world wide. Because of the risk of inducing preterm labor and delivering so early in the pregnancy, fetal surgery traditionally was reserved for life-threatening circumstances. While spina bifida is not necessarily life-threatening, it is the most common debilitating birth defect, diagnosed in about one of every 1,000 pregnancies here in the United States. Babies born with spina bifida typically experience one or more lifelong and an sometimes devastating physical disabilities like weakness or paralysis in their lower limbs, loss of feeling, urinary and bowel dysfunction, and hydrocephalus (water on the brain). In addition some children also have skeletal deformation, sexual dysfunction, and mental impairment. Each child is an individual with differing degrees of disability. "If we have the chance to lessen the extent of injury, why wouldn't we do that," asks Dr. Joseph Bruner, Director of Fetal Diagnosis and Therapy at Vanderbilt.

Benefits of Fetal Surgery

Fetal surgery for spina bifida is intended to decrease the handicaps associated with spina bifida by protecting the fetuses previously exposed spinal tissue from additional damage by the amniotic fluid and intrauterine movement. Doctors say this procedure can not restore neurological function which has already been lost, but it may prevent additional loss from occurring due to the intrauterine environment.

As an added and unexpected benefit, it was discovered that the procedure apparently affects the way the brain develops in utero, allowing certain malformations of the brain, typically associated with spina bifida, to correct themselves. "It's extraordinary that the malformation goes away," Dr. Scott Adzick told the Philadelphia Inquirer. Because of the malformation, traditionally more then 90% of children with spina bifida required a shunt to drain fluid off the brain. "Shunts are bad news." Adzick said. "The average kid needs three or more in a lifetime." Research appears to indicate that children whom have had fetal surgery for spina bifida, are less likely to require a shunt. Perhaps a 33% to 50% reduction in the need for shunts.

"No shunts or fewer shunts is a significant benefit to patients, hospitals and insurance companies," says Dr. Joseph P. Bruner, director of fetal diagnosis and therapy at Vanderbilt. "It will decrease the overall rate of hospitalization and care these children receive."

Risks of Fetal Surgery

Certain risks must be considered with any surgery. In fetal surgery, there are separate risks for the mother, and for the fetus. Risks to the mother may include, infection, blood-loss leading to transfusion, gestational diabetes, weight-gain due to bed rest. The mother can assume that all future pregnancies will need to be delivered via c-section.

Of all the risks to the fetus, the risk of complications due to premature delivery top the list. Depending on the gestational age at delivery, premature babies are at risk for lung immaturity, blood transfusion, brain hemorrhage, organ immaturity, and the risk of death. Because fetal surgery for spina bifida is so new, unforeseen, unimaginable, and numerous unanticipated other problems could arise.

Disability & Society

V) Should Kirsten Johnson be allowed to have kids?

( )

August 21, 2005

BY KATIE WATSON

Vera Howse thinks her 26-year-old niece Kirsten Johnson wouldn't be a good mother, so she's asked the Cook County Probate Court for authorization to sterilize her niece against her will. Johnson is cognitively impaired, and her aunt is her legal guardian.

This case has broad significance because Illinois, unlike other states, hasn't established when a court should grant a guardian authority to have a ward permanently sterilized.

Most cases like this are resolved in the doctor's office. Physicians at one Chicago hospital system estimate that it receives one to three guardian requests to sterilize their wards per month, usually from parents of disabled adolescents. After counseling, most eventually opt instead for long-term reversible birth control.

But in this case Howse continued to insist that her niece be sterilized permanently, and her internist and psychiatrist did not object. Johnson countered by contacting Equip for Equality, a disability rights organization that represented her in court. Johnson, who lives with her aunt in south suburban Matteson, is sexually active. She has always used birth control (her aunt currently helps her use the patch), but says if she were to marry a man who could help her parent someday, she would like to have a child.

Historically speaking, Johnson's situation isn't unique. State programs forced up to 70,000 disabled and poor Americans to be sterilized between the early 1900s and the 1970s. These programs, now ended, were driven by a belief that social eugenics would both "improve the gene pool" and save the taxpayers money by reducing the number of children born to parents who couldn't support them.

The courts were no help. In Virginia, for example, the Lynchburg Colony for the Epileptic and Feeble Minded, which sterilized 8,300 people from 1927 to 1972, was a model of empty due process. The disabled and poor teens forcibly brought to the institution were given a perfunctory hearing, after which a judge would always find it was in the "best interests" of the patient and society that the ward not reproduce. In 1927 the Supreme Court upheld this Virginia statute in the case of Buck v. Bell.

Six years later, the Nazi regime in Germany modeled its new eugenic program on U.S. sterilization statutes. They began with the sterilization of disabled individuals in 1933, later executing thousands of persons with disabilities and millions from other "unfit" populations.

Whose 'best interest'?

But things are different now, right? States have formally apologized for their eugenics programs, the Americans with Disabilities Act ushered in a new era of accommodation and respect, and the disabled person's right to medical self-determination is implemented by his or her guardian, who is usually a family member concerned with the disabled person's "best interests." At least that's the standard Illinois law tells guardians to use.

The problem is that childbearing is one decision in which what's best for the ward and what's best for the guardian might conflict. While some cognitively impaired people might enjoy parenthood, their guardians may fear a new baby will become the guardian's responsibility. Or, in the case of congenital disability, guardians may fear the ward will "pass on their genes" and bear another disabled family member. Ironically, these criteria -- resources and eugenics -- are exactly those used by the now-discredited state programs.

What standard should Illinois courts use to resolve cases like Johnson's? To be blunt, families give up a lot to care for a cognitively impaired child. Is it so wrong to ask the disabled individual to give up the right have children in return? Might this be a fair exchange?

Absolutely not. The law says no person's reproductive options are contingent on the needs, desires or judgment of another. Why should persons with disabilities be the exception? No parent is allowed to control whether their child bears a grandchild, even when they're a minor (legally "incompetent").

Wives can give birth and have abortions against their husband's wishes. And the Supreme Court has ruled that criminals can't be sterilized as part of their punishment.

Reproductive freedom holds such a cherished place in our society that even the welfare of the potential child does not trump it. The state cannot prevent an abusive, drug-addicted person who has lost eight children to foster care from procreating.

But Judge James Riley sees this case differently. In his Aug. 11 decision, he ruled that it is in Kirsten's best interest 'to have a permanent form of birth control. Why? Because several people testified that she would not be able to care for a child alone.

This sounds like a "parental litmus test" to me. I'm not applauding irresponsible parenting, but making people with disabilities the only group in America that must prove they'll be good parents before they are "allowed" to reproduce is intolerable discrimination.

The second reason Riley gave for his decision was Johnson "would suffer irreparable psychological damage" if she had a child and the child was removed from her because of her inability to care for that child.

She can read, not drive

No one, including Johnson, disputes she'd need training and support to be a good parent. She's high functioning in some ways, but her IQ is in the borderline to low average range. She can dress, bathe and feed herself, but she can't drive. She can read, but she can't handle financial affairs, and she needs some assistance with household chores. But information and services for disabled parents is available at places like Community Support Services. Parenting support for the cognitively impaired is like ramps for those in wheelchairs -- small modifications that ensure the only limitations are those caused by disability itself, not our society's response to it.