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AUGUST 6, 2007
ARC OF PHILADELPHIA TAKES POSITION ON ASHLEY TREATMENT

In 2004, “Ashley X,” a seven-year-old girl in Washington State, born with severe developmental disabilities, underwent a series of medical procedures to prevent her from maturing sexually and to impede her growth.  Unlike most medical treatments, these procedures were not intended to cure any kind of medical condition.  Instead their principal purpose was to make it easier for her parents to take care of her.  Her breast buds were removed, she underwent a hysterectomy, and she was given hormone treatments designed to hinder her growth.  This set of procedures, known as the Ashley Treatment, set off a fierce debate in advocacy circles— with many commentators condemning and supporting the decision of the parents. 

Ashley’s parents, who are physicians, have justified these treatments by claiming it would make it easier for them to continue to be the primary caregivers.  Born with a severe brain impairment known as Static Encephalopathy, Ashley can’t talk, raise her head, or move around.  She is fed by a tube.  By hindering her growth, claimed the parents, she can be more easily moved—reducing the chance of bedsores.  The parents also felt that by preventing the onset of sexual development, it would minimize the care issues involved in menstruation and would make Ashley less likely to be a target of sexual abuse.

Critics of the Ashley Treatment say it is impossible to imagine that Ashley would choose to undergo these operations on her own.  Such “desexualizing” and “infantilizing” procedures aim to keep people with disabilities appearing like babies, subjecting them to potentially risky medical procedures for the mere convenience of caregivers.  Such treatments, in fact, were already illegal in the State of Washington—an investigative report authored in May 2007 strongly criticized the hospital for violating state law by performing an ethically questionable medical treatment. 

For Arc of Philadelphia Advocacy Director Donna Szamatowicz, this is personal.     The mother of a child with multiple disabilities, Donna cried when she first read about the Ashley Treatment and then immediately went to hug her daughter.

“When I first read about the Ashley Treatment, I tried to imagine my daughter saying, ‘Gee, thanks Mom for making me small’,” said Donna.  “Oh, and by the way, and if you think I’m going to have a hard time being accepted ‘normal’ growing up well guess what, you didn’t let me so I’ll never know what it would have meant to be more “normal” than not.  If you think I wasn’t normal before, what about now— and how about 20 years from now?”

Even though her own daughter is non-verbal, Donna said friends would unanimously agree she would have no problem communicating such sarcastic disapproval. 

Donna said she thinks about the struggle her daughter lives with each and every day trying to be understood and accepted. At the same time, Donna guides people to know her daughter’s communication and what to notice. Some people, Donna says, “get it” and others will remain the naysayers.  For Donna, the tragedy of the Ashley Treatment is that Ashley’s own feelings or desires were never taken into account. 

The Arc of Philadelphia Board of Director’s has issued a position statement that condemns such procedures and supports educating policymakers about options, supports, and services so that Ashley Treatment does not become public policy.  The emphasis, says Donna, should be on giving parents the support and education they need so they know the options available.

“The Ashley Treatment is already illegal,” said Donna.  “But we are concerned that it can create a precedent that might encourage other parents to do the same thing.  We want to make sure that such radical and invasive treatments do not slowly creep into accepted practice.  And we want parents to know about the supports and services they need to be able to care for their children with severe disabilities.”

By taking a stand against The Ashley Treatment, The Arc of Philadelphia is joining the voices of other organizations across the nation in speaking out against such illegal and invasive medical interventions.  For Donna Szamatowicz, the question is a simple one: “If we truly listen to the person, what would they want?”
 
The Arc Philadelphia board of directors unanimously passed a position statement regarding the Ashley Treatment.  This statement reaffirms The Arc of Philadelphia’s commitment to supporting the human rights and self-determination of people with disabilities.

POSITION ON ASHLEY TREATMENT

The Arc of Philadelphia fully supports the commitment of The Arc of the USA and UCP statement reaffirming the human rights of all people with disabilities.

Therefore, The Arc of Philadelphia reaffirms its commitment to working with all agencies and organizations to ensure that infantilizing interventions such as those promoted by the Ashley Treatment do not become public policy.

At The Arc of Philadelphia, we remain steadfast in our belief that all people, especially children, with significant disabilities are entitled to the same civil and human rights, dignity and respect that people without disabilities enjoy.

We will continue our work to ensure that communities, especially our legislators, doctors and policymakers, are aware of the needs of all children and adults who live with significant disabilities, and the concerns of their families.

We remain committed to helping families access supports and services before they become overwhelmed by the care-giving responsibilities that would make them even entertain an alternative and intrusive intervention such as the Ashley Treatment.

We must all be advocates.