JFActivist

Parents Fight for "Right to Life" for Daughter w/ Tay-Sachs

From the BBC (July 1):

Parents fight for 'right to life'

A couple say they face a legal battle with a hospital to keep alive their six-year-old daughter in future.

Amber Hartland, from Cwmbran, Torfaen, has an incurable brain disorder and needs intensive care treatment in Cardiff when she gets chest infections...

...Last Friday Mrs Hartland and her husband Nick were told doctors wanted to withdraw the option of her being put in intensive care and given life-saving procedures in future.

This is what the courts would be asked to decide upon...

...Read the entire article.

 

92% Termination Rate of Fetuses with Down Syndrome Leads to Dwindling Populations

From the Roswell Beacon (Georgia) - April 21:

An excerpt follows from the article entitled
"Modern Eugenics: The Elimination of a People" by Alan Sverdlik:

Overcoming The Odds
Scanning the faces bunched together in a converted Sunday school classroom – innocent, mischievous, curious, mirthful – it is startling to consider that most of them overcame daunting odds just to be born, let alone accept a genetic defect with such evident grace. In fact, the number of people with Down syndrome, which can cause mild to moderate mental retardation, are dwindling so rapidly that respected advocacy groups consider them an endangered species whose survivors face a bleak future: lonely, unwelcome, ignored by medical researchers, shunned by insurance companies...

...Read the entire article.

Court Deines Bid to Sterilize Woman with Traumatic Brain Injury and Other Disabilities

From the Chicago Tribune:

Court denies bid to sterilize mentally disabled woman
Advocates, ethicists hail precedent-setting ruling

By Michael Higgins | Tribune reporter
April 18, 2008

Disability rights advocates and medical ethicists praised a precedent-setting ruling Friday by the Illinois Appellate Court denying a bid to sterilize a mentally disabled woman against her will...

...Read more.

"Building Baby from the Genes Up"

Ronald M. Green, professor of Ethics at Dartmouth College, authored an opinions column for The Washington Post over the weekend entitled "Building Baby from the Genes Up" (April 13). While acknowledging the concerns of those leery of eugenic "slippery slopes," Green hails the possibilities of diminishing illness and disabilities via genetic technologies.

From "Building Baby from the Genes Up," by Ronald M. Green:

"Since the completion of the Human Genome Project in 2003, our understanding of the genetic bases of human disease and non-disease traits has been growing almost exponentially. The National Institutes of Health has initiated a quest for the "$1,000 genome," a 10-year program to develop machines that could identify all the genetic letters in anyone's genome at low cost (it took more than $3 billion to sequence the first human genome). With this technology, which some believe may be just four or five years away, we could not only scan an individual's -- or embryo's -- genome, we could also rapidly compare thousands of people and pinpoint those DNA sequences or combinations that underlie the variations that contribute to our biological differences.

With knowledge comes power. If we understand the genetic causes of obesity, for example, we can intervene by means of embryo selection to produce a child with a reduced genetic likelihood of getting fat. Eventually, without discarding embryos at all, we could use gene-targeting techniques to tweak fetal DNA sequences. No child would have to face a lifetime of dieting or experience the health and cosmetic problems associated with obesity. The same is true for cognitive problems..."

...Read more.

British Tory Leader Will Vote to Continue to Allow Late Abortions for Minor Disabilities

From the UK's Daily Mail:

Cameron to back late abortions for babies with minor disabilities

David Cameron has risked angering hardline anti-abortion campaigners by saying he will vote to allow the termination of babies with minor disabilities.

With MPs preparing for a Commons battle on a range of controversial human fertility issues, the Tory leader said there was no need to change the law.

MPs are expected to vote on a proposal to change the rule that allows abortions as late as 39 weeks if the unborn child is diagnosed with a disability. But Mr Cameron said: "I won't be supporting that. The current law should remain."...

However, he pledged to vote to reduce the abortion limit for healthy babies to 20 weeks from the current 24.

The issues raised by the legislation are sensitive ones for Mr Cameron because his five-year-old son Ivan was born with a severe form of cerebral palsy and epilepsy and needs 24-hour care....

...Read more.

Parents Refute News Account of Intent to Use Plastic Surgery on Daugther with Down Syndrome

UPDATE:

Earlier this month, JFActivist posted a story from the UK's Daily Mail regarding a plastic surgeon and his wife who the story reported were considering plastic surgery for their daughter, Ophelia, who has Down syndrome.

The couple, Laurence and Chelsea Kirwan, has since issued individual statements, denying any intention to alter their daughter's appearance using cosmetic surgery and that they love her just as she is.

Read their statements:

• Laurence Kirwan's statement
• Chelsea Kirwan's statement

Parents Use Cosmetic Surgery so Daughter with Down Syndrome Can "Fit in"

From CourierMail (AU):

Down Syndrome Girl Has Cosmetic Surgery to "Fit in"

THE parents of a Down syndrome girl have caused an outcry by subjecting their daughter to cosmetic surgery to improve her appearance.
The girl had had "radical and painful" cosmetic surgery three times by the time she was five so she could "fit in" with her peers, the Daily Mail newspaper in Britain reported yesterday.

Parents of another girl told the paper that they were also considering altering her appearance in the future so she could be more "accepted"...

...Read the rest of the article.

Neither Political Party Represents Us

Guest Column
By Rahnee Patrick

Somewhere on the Internet (I ♥ Google) is a picture of my face hanging over a large piece of red poster board, hand painted, with the word LIFE.  The photo is for sale, right now.  I imagine how the picture will be used: my round face protesting legal abortion.  I envision the photo placed on websites and other propaganda that strives to criminalize abortion and other reproductive health even further.  I do not want to limit access to reproductive health for women in the United States and around the world although the photo floating around the Internet could tell a different story.

Actually, I made the sign I held but the words I painted read: LIFE + DISABILITY = LIFE WORTH FEEDING.  If you’ve ever made a sign to hold at a protest, you know you only have so many square inches to send a message.  I was referring to Terri Schiavo, whose stomach tube that delivered nutrients to her disabled body was being removed.  I do not agree that her feeding tube should have been removed so I joined other disability rights activists to protest and celebrate all the tubes that the disability community uses to live our lives – tubes for breathing, for hearing, for feeding, for peeing.  However, there I stood, next to a man holding a sign with a photo of the fetus – a pro-life protester.  I quickly moved away from him but the collective effect was present for the media and passers-by: we wanted to not only keep Terri fed but that we also supported making abortion illegal in this country.  The overall effect made my stomach turn. 

I support women to be able to feely make choices about our own bodies, especially when it comes to our reproduction.  Women with disabilities cannot afford to ally ourselves with criminalizing abortion in our country and in our world.  Our country’s limited access to abortions and general reproductive health services has endangered so many women’s lives.  Three years after Roe V. Wade, Congress decided Medicaid dollars cannot be spent to cover the cost of an abortion.  The decision leaves those of us in poverty and on Medicaid to often forego abortion services, when we need them.  Mississippi has only one clinic in its entire 898 square miles to provide abortions and is not the only state to limit its women’s rights to reproductive health services.  We are grinding back to a time when women had to depend on a loose, underground network of people to access abortions, at the risk of the woman’s life and dignity.  Other countries in the world, such as Romania, where abortion is illegal, leave women powerless, without any control or self-determination in their own lives. 

Media coverage of Senate Bill 609, the Prenatally Diagnosed Condition Awareness Act, co-sponsored by Senators Brownback – R (KS) and Kennedy – D (MA) strikes a chord.  The bill aims to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions.  Too many times, disability or even its possibility, in a fetus has been cause for support of legal abortion.  Disability is a part of the natural diversity of our human and animal lives.  Its eradication diminishes the genetic diversity of our world and devalues the disability experience.  People’s worth cannot be measured by whether s/he has a disability, whether we can work, do step aerobics or appreciate a Woody Allen movie.

Please note the phrase, “support services.”  We disabled folks use a lot of support services, to feed, bathe, dress ourselves, to provide respite to our caregivers and families and to pay our bills.  Support services means having government-funded help to improve the quality of our lives with our disabilities.  Past and looming cuts to S-CHIP, educational acts, Medicare, Medicaid and Social Security threatens our lives as much as a mother and father who fear disability in their child’s life.

The disability community’s issues must bring the two political parties together, as Senators Brownback and Kennedy have done.  But neither camp solely represents us.  It’s important that we, women with disabilities, do not ally ourselves with either political party on the issue of reproductive health.  They don’t quite understand our position.  Yet.

Rahnee Patrick is one of AAPD's 2008 Paul G. Hearne / AAPD Leadership Award recipients.

Parents of "Pillow Angel" Stand by Decision

From CNN:

Parents of disabled child stand by controversial treatment

By Amy Burkholder

NEW YORK (CNN) -- It's been a year since the parents of a severely disabled child made public their decision to submit their daughter to a hysterectomy, breast surgery and drugs to keep the girl forever small. Today, the couple tell CNN, they believe they made the right decision -- one that could have a profound impact on the care of disabled children worldwide.

"The 'Ashley treatment' has been successful in every expected way," Ashley's parents told CNN exclusively in a lengthy e-mail interview. "It has potential to help many others like it helped our precious daughter."

While unwavering in their belief in the treatment, Ashley's parents continue to insist on anonymity. In the year since Ashley's parents went public, not only did the hospital that sterilized Ashley admit it broke Washington state law, but also the doctor who treated Ashley committed suicide...

...Read more.

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More on Ashley:

• Picture album from Ashley's parents' website
• Ashley's parents' blog
• Experience of another "Pillow Angel" - "Been there. Done that. Preferred to grow."

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ACTION ALERT

From F.R.I.D.A:

The struggle continues!  Want to do something about it???  FRIDA has some action requests for you.

 

First and most importantly, contact Dr. Nancy A. Murphy in Utah to let her know that you think the medical intervention in the case of Ashley X was WRONG.  Tell her that instead of Ashley's parents changing her body, they should have sought out community supports and assistive technology.  People with disabilities around the world agree that society should change to us---we should not have to be "fixed" for society.  Dr. Murphy is the chair of the American Academy of Pediatrics Committee on Children with Disabilities and she plans to talk about the Ashley X case with the committee at the AAP conference in October. We must help Dr. Murphy understand the disability rights position on this issue.  Contact her and explain what you think---she seems to be trying to stay objective and get the issue resolved in the medical community, but it will help if she hears from us.  If we do not, who will?  In 2007, over 90 disability rights groups expressed opposition to what happened to Ashley!  You can email Dr. Murphy or call her at 801-581-9978.  You can also call her assistant, Erin Wachs at (801) 581-9978.  Read Dr. Murphy's bio.

 

Please contact Art Caplan in Philadelphia and thank him for supporting community choice options in the CNN Ashley X article. Email him or call him at (215) 898-7136.  Philly ADAPT had to chase Dr. Caplan down in a hallway to get him to commit to supporting community choice.  He is keeping that promise.  He is on CNN quite often as their expert on bioethics.

 

Finally, please comment on the story above at the CNN website by scrolling down to the bottom.  Let CNN know what you think!  We need disability rights perspectives on there!  There are a LOT of comments supporting the parents' decision to intervene on their daughter's body. 

 

Please take some time in the next couple of days to contact these people and protect all our rights to control over our own bodies.  Go go go!

 

Thank you,

 

FRIDA

UK Bill Would Ban Selection of "Deaf Embryos"

From TheObserver (UK newspaper, Guardian Unlimited):

This Couple Want a Deaf Child.
Should we try to stop them?

March 9, 2008

By Gaby Hinsliff and Robin McKie

Like any other three-year-old child, Molly has brought joy to her parents. Bright-eyed and cheerful, Molly is also deaf - and that is an issue which vexes her parents, though not for the obvious reasons. Paula Garfield, a theatre director, and her partner, Tomato Lichy, an artist and designer, are also deaf and had hoped to have a child who could not hear.

'We celebrated when we found out about Molly's deafness,' says Lichy. 'Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in.'

Now the couple are hoping to have a second child, one they also wish to be deaf - and that desire has brought them into a sharp confrontation with Parliament...

...Read the rest of the article.