http://www.suntimes.com/output/otherviews/cst-nws-sterile21.html
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.
This case highlights the deep chasm that separates the able-bodied from
the disabled. To prove it, try a thought experiment: Who in this essay
have you identified with so far? I know I imagine myself in the position
of the well-intentioned, overwhelmed guardian. If I stretch, I can
imagine what it might be like to be raised by a cognitively impaired
mother. Both sound hard.
But it's telling that I don't imagine myself in the shoes of the disabled
person. It's also foolish. Johnson's brain was injured in childhood when
she was hit by a car, something that could happen to me tomorrow. And if
it did, I'd want to live my life to its fullest. I'd want "the dignity of
risk" -- the option to try difficult things and live with the
consequences -- and the support I'd need to maximize my potential and
happiness. That's my "living will" for the social care I'd want after an
accident.
Johnson's case isn't over. Riley has ordered that Johnson be evaluated to
see whether she's a medical candidate for Implanon (the new Norplant) or
an IUD that last 5 or 10 years, and he deferred to January his final
ruling on Ms. Howse's petition for tubal ligation.
In this precedent-setting case, Riley says he's following a Pennsylvania
court that adopted a "discretionary best interest standard." But his
application of the specified best interest criteria is misguided and
incomplete, because the standard the Pennsylvania court used is intended
to focus the court on what's best for the person with a disability, and
away from the best interest of the guardian, family, society or potential
children.
Persons with disabilities in Illinois deserve better than this. Tubal
ligation is a safe, effective form of contraception many women --
including some with cognitive deficits -- freely choose. But allowing
guardians to permanently block their ward's reproductive desires with the
muscle of the courts and the knife of medicine is a discriminatory step
back toward a shameful era to which we should never return.
Katie Watson is lawyer and a lecturer in the Medical Humanities and
Bioethics Program of Northwestern University's Feinberg School of
Medicine.
Sun-Times Company
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