Devaluing a life

At 6 years old, a little girl named Ashley had her breast buds and uterus cut out of her body in order to keep her permanently child-like. Additionally, she was forced to undergo estrogen treatment to stop her growth so that her body would remain small, making it easier for her parents to provide her care in what is almost certain to be a shortened life.

The so-called Ashley treatment (as it is now known) is not fiction, but rather a true-life, American story that received worldwide attention a mere five years ago. Sadly, there is evidence to suggest that this practice is spreading; in fact, Ashley’s “parents report that they have been contacted by thousands of families interested in the treatment and they believe that at least a hundred children have undergone the same treatment.”

In a recent report, Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, released by the National Disability Rights Network, its executive director, Curt Decker, says: “Right now, somewhere in America, parents or guardians are sitting down with a doctor to discuss withholding life sustaining medical treatment in situations where there is no terminal disease or removing their child’s sex organs, breasts buds, and stunting growth with hormone treatments.” In fact, NDRN has uncovered some cases wherein some parents who can no longer bear the “burden” of caring for their children have withheld “medical treatment and even basic food and water during minor illnesses with the intent of letting the illness progress until death”-in at least one case of a 13-year-old boy, the parents got their wish and the boy died.

The question then has to be why? And how, in our modern day, can such things be happening? The answer per referenced report is simply, “because the persons being considered are viewed as having little value as they are. They are considered not as fully human, endowed with inalienable rights of liberty, privacy, and the right to be left alone-solely because they were born with a disability.” The assumption is that certain individuals with disabilities lack any awareness; thus would not be concerned about the quality of their own lives. Of course, we all know what it means to assume.

For advocates at the Northern Marianas Protection & Advocacy Systems, Inc. or NMPASI, the cases of devaluing the life of an individual with a disability are not always so profound, but they exist nonetheless. In some cases, it’s the mere act of restricting people from making their own decisions about what they may or may not want to do, for others it’s the purposeful act of taking away what little they have in monetary benefits and there are those kept hostage in the backrooms of our villages without any access to the community whatsoever. Like NDRN, NMPASI maintains that, “Every person is born with civil and human rights and an inherent dignity.” As Mr. Decker points out, “The reality that [things like these are] happening in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse.” At the very least, “performing certain medical procedures or withholding life sustaining treatment in non-terminal situations without judicial review violates the civil rights of people with disabilities.”

NMPASI can bring attention to disability-related issues and perform critical “watchdog” functions to ensure that the human and civil rights of persons with disabilities are protected; however, “reducing the risk [of rights violations] is the responsibility of us all: families, service agencies, forensic personnel, legislators, the individuals with disabilities themselves, and others.”

For more on NDRN’s report, Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, contact the NMPASI Office at (670) 235-7273/4 [voice] / 235-7275 [fax] / 235-7278 [tty] or check us online at www.nmpasi.org. (Jim Rayphand)

Jim Rayphand is the executive director of the Northern Marianas Protection & Advocacy Systems, Inc.