There’s a story in the news about “growth attenuation treatment” or an intentional hormonal and surgical stunting of a disabled child’s body. It’s difficult even reading the press articles about this, because of the ableism in the writing. Charley Hooper is described in dehumanizing terms. “To hold Charley is to experience the sensation of dead weight. She is a jumble of uncontrolled limbs with a floppy head that needs supporting,” according to the Associated Press. This is a living human child being discussed like nothing more than unweildy luggage, in the source for mainstream journalism.
Charley has several impairments. She was deprived of oxygen at birth resulting in a brain injury. She has cerebral palsy, is blind, and is epileptic. Each of these disabilities requires different accommodations. Not one of them was treated or cured by stunting her physical growth. Not one of them was treated or cured by removing her uterus and breast buds. Not one of them was treated or cured by forcing her into puberty and menstruation at six years old. Growth attenuation “treatment” did not actually treat any of Charley’s pre-existing conditions. Rather it gave her new ones. Extreme small stature is a disability, requiring numerous acommodations. This is a new disability Charley was not destined to have which her parents gave to her by their choice, and without hers.
If Charley did not have multiple pre-existing disabilities, no ethics committee would agree to this, and the general public would not find themselves divided on the issue. Putting a six-year-old through unnecessary puberty and then surgically removing her breasts and uterus would be seen as obvoius wrongs. Intentionally stunting a child’s (most often a girl child’s) growth might be likened to foot binding or forced malnutrition. Removing healthy organs to keep children undersized as adults is simply not something we do – unless of course the child is disabled. Then suddenly we try to concoct reasons why it might be a necessary course of action. Despite growth attenuation not being a cure for the disabilities these children have. What then can our reasoning be? If we would never do this to an able child, if we would never subject them to unnecessary major abdominal surgery, and if it does not treat any of the conditions a disabled child presents with, why on earth would we do this to disabled children? Because we don’t think profoundly disabled children are fully human.
The press stories write about the lack of communication between Charley and her parents as if it were Charley’s fault. Not as if her parents who do not have communication disabilites might have a greater responsibility to go the extra mile in trying to converse with their daughter. But the fact is speech is not the only form of communication, and even people who have never spent a day in disability advocacy communities know that. We know that babies cry to communicate with their parents, and we know parents can tell what their babies do and don’t like long before those babies can speak. We know that when a cut purrs, it is happy, and that when it arches its back and hisses it is upset, and a cat isn’t even the same species. We do know ways of figuring out what someone likes and doesn’t like, wants and doesn’t want, without the English language. The articles make no mention of what if any methods of communication the Hoopers tried with Charley. I know before my son could speak, I used flash cards and sign language and songs and any other method I could think of to know his mind.
The Hooper say they had Charley’s womb removed so that she wouldn’t get pregnant in the event she was abused. The odds aren’t great for Charley and girls like her. Girls with intellectual and developmental disabilites are sexually assaulted at a nearly 100% rate. Such girls are at increased risk of virtually all forms of abuse, including financial, caretaker, parental, and physical. Sometimes pregnancy is what alerts others to the abuse, enabling them to make it stop. That’s a hard choice to make as a parent of a girl most likely to be abused, a girl who may also be most likely to have pregnancy complications or who may be unable to parent independently.
Of course, seven is a young age to be making such predictions about future competency. Autistic author and advocate Amy Sequenzia is non-speaking and was presumed to be severely mentally impaired by her parents and doctors until she began typing to communicate at age eight. If contraception is the choice parents make, as many many parents of both disabled and abled teens and preteens do, there are a multitude of less invasive options. Long-term reversible contraceptives such as IUDs can prevent pregnancy. Hormonal birth control can be used to avoid menstruation. Hysterectomy on a pre-preteen child is not a proportional response to puberty and the development of secondary sexual characteristics.
Growth attenuation is extreme, invasive, unnecessary, and does not treat or cure the disabilities of the children put through it. The World Health Organization (WHO) has called for an end to the involuntary sterilization of disabled people, people like Charley. Charley will spend the rest of her life in a body others perceive as childish. Charley will be treated as a child by virtually everyone she meets for the rest of her life, no matter how long that is. Charley will be undersized and less able to defend herself. And if Charley’s parents continue on this path of making her body accommodate them, instead of making their world accommodate Charley and her body, Charley will continue to struggle to make herself understood.