In the 1920s, many states practiced forced sterilization. In the 30s, the Third Reich adopted forced sterilization and later euthanasia. A few decades later, the US and other countries outlawed both practices as inhumane.
Fast forward to the 21st century, when inclusion in schools is mandated and the disability movement is building stronger than ever. Forced sterilization is again being debated after Seattle doctors "treated" Ashley X at the request of her parents. When Ashley began showing early signs of puberty, the parents requested that, for her "benefit", she stay a child. Her uterus and breast buds were removed, and high doses of estrogen were administered to this end. Her parents claim she’s better off this way since a small child is easier for them and others to care for, and that due to the ease of care, she will be able to experience more.
In a Fox News article from January 2007, a claim was made that she did not have the mental capacity to "experience any sense of indignity":
George Dvorsky, a director of the Institute for Ethics and Emerging Technologies, countered: "If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity."
However, consider this quotation from an MSNBC commentary during the same time period:
It is not clear whether her damaged brain can recognize her parents or her siblings.
If it’s unclear whether she recognizes family, than how is it clear what her "mental capacity" is?
It seems, through all the coverage and family defenses, that this was a "treatment" of convenience. It is inarguable that one of a parent or guardian's primary responsibilities is to protect their child from harm. As a guardian, one should do nothing permanent without knowing what one is taking away. Did her parents consider how many times doctors have told parents that their child would never walk, never eat without a feeding tube, or never breathe on their own - only to prove the doctors wrong? But beyond all those questions, why wasn’t a child like Ashley X given an advocate that would fight for her rights?
Disabilities are often first seen as what a person can’t do, not what is possible. Growth changes the body, and who’s to say that a person will not make any progress? Even with that knowledge, what gives someone the moral or medical right to take that away from a child who, in the minds of so-called "professionals", is severely disabled both physically and developmentally? Most people with disabilities regularly cite instances where they proved medical professionals wrong. Sometimes, even we do not realize what we are capable of until we are given the opportunity. Ashley X was robbed of many such opportunities.
I hate to relate this situation to Nazi-era eugenics, but the parallels are evident. In the 1930's, a couple petitioned Hitler to kill their disabled infant. That request led Hitler to command that all children with disabilities under three years be killed. Compare that to 2007, when the parents of a young girl with a disability ask doctors to "freeze" her growth. They want the same option available to other families. On their blog, the family states:
We appreciate your interest in our daughter’s story, which we share to help other families who might learn from our experience and bring similar life changing benefits to their Pillow Angels.
While we know the benefit to her parents, what is the benefit to Ashley? The focus been on how to "take care" of her - is anyone considering what is best for her? Various people have tried to claim they know for sure, but I go back to my point about recognition. If the recognition of family is an unknown variable, how can you then claim to know her level of awareness in other areas?
In a Time article, "Pillow Angel Ethics", the final approval was explained:
The ethics committee essentially did a cost-benefit analysis and concluded that the rewards outweighed the risks. Keeping Ashley smaller and more portable, the doctors argue, has medical as well as emotional benefits: more movement means better circulation, digestion and muscle condition, and fewer sores and infections. "If you're going to be against this," Gunther says, "you have to argue why the benefits are not worth pursuing."
I doubt anyone searched out people with disabilities who could easily argue against the benefits. Beyond that, saying they did a "cost-benefit analysis" and calling a little girl "portable" is horribly offensive. This case, the base issue, is the crux of the disability movement – our lives are not the "property" of those whom we need assistance from. We are autonomous individuals with the same rights as everyone else.
Peter Singer, a controversial philosopher, responded to the question of treating Ashley with dignity in his New York Times article:
But we should reject the premise of this debate. As a parent and grandparent, I find 3-month-old babies adorable, but not dignified. Nor do I believe that getting bigger and older, while remaining at the same mental level, would do anything to change that.
Now consider Merriam-Webster’s definition of dignity:
- the quality or state of being worthy, honored, or esteemed
We can therefore conclude that, while a baby is adorable, they are unworthy in his eyes. This supports his assertion that the euthanasia of severely disabled babies, in some cases, is acceptable. He further states:
What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.
Dignity is not "lofty talk", but an important part of the human experience. Many able-bodied people think people with disabilities are less capable, African-Americans had to – and still have to – fight to be seen as capable, and women have fought the same battle. All humans have dignity, and to violate that is reprehensible.
Katie Jones is another severely disabled girl whose dignity and right to life has been violated; attached to her wheelchair is a DNR (Do Not Resuscitate) order. The Chicago Tribune article about her case is no longer available on their website, but there are many blogs where this has been discussed. One such blog is The Gimp Parade; in a post about Katie, the author cited the Tribune article:
Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.
Besides, anything that beeps isn't allowed in the Jones house.
"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.
First of all, feeding tubes are not an obstruction to physical contact. Beyond that, creating a "no beeping rule" obstructs Katie’s ability to get the best care possible. That arbitrary rule means that, should Katie need a machine even occasionally, death would be a better option. What does Katie think of this? Does she have a say?
This is at the forefront of the issue of human rights. Do parents have the right to "freeze" their child’s development? How about whether to resuscitate a disabled child in the event of an accident? What are people with disabilities worth if there are such arbitrary judgments made for our supposed benefit?
Would you be surprised to hear the author of this is a so-called "severely" disabled woman? I have no doubt it’s surprising to many, but that is my point. Who are others to ascribe value to a human life of a disabled person without knowing them? I may be physically disabled and have a learning disability, but I am more than my disability. My life is not living to the convenience of others, but living with the help of others.
Ashley and Katie’s lives’ are at the mercy of parents who believe they are doing what’s best. But those girls deserve to live - without pity, without condescension, and without contempt.