Disabled lives have value, but you wouldn’t know it by looking at how the media represents disability. We are portrayed as objects of pity, martyrs of inspiration, and not worthy of contributing our own thoughts to conversations that deal specifically with something we live with every single day. Being disabled is a part of who we are, and many of us in the disability activism communities are attempting to redefine the way the world looks at disability. A major part of that will depend on how media represents us.
There are about 1 billion disabled people worldwide, 56M+ who live in the United States. That accounts for around 20% of the overall population. Unfortunately, the 80% of the world that is not disabled are wearing blinders when it comes to disability. Even the media refuses to listen when disabled people attempt to speak about disability. This was quite apparent in a recent Twitter exchange we, and other disabled activists, had with Genevieve Field, a contributing editor at Glamour, who posted a piece in New York Times magazine entitled, “Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?”
The article examines a highly controversial treatment known as growth-attenuation therapy or the Ashley Treatment. It was named after the young disabled girl who was the first to receive the controversial treatment. Ashley’s parents allowed doctors to administer estrogen estradiol, to close her bones’ growth plates, so she would remain the size of a child. They also force sterilized her, performing a hysterectomy, and removed her breast buds, so her chest would not grow. The excuses for doing this, are all nauseating and inaccurate.
Doctors assume that Ashley, who has physical and intellectual disabilities, is not able to comprehend what is going on, so consent for the treatment was not needed from her. The big problem with this is that there have been numerous cases where disabled individuals who were unable to verbally communicate found another way to make their voices heard. Once they were able to communicate, it became clear that they were aware of everything going on around them. Without communication there is no way to know for certain if someone like Ashley can comprehend and can therefore give consent or not. We believe it is best to err on the side of caution. New technology is making communication available to many disabled people, even those who were initially thought to have the intellectual capacity of infants and toddlers. We cannot assume communication is not possible for anyone.
Another excuse is that it is too hard to physically care for physically disabled people who rely on full care from another human being. The thought is, keeping the child small will make it easier. Thanks to technology, there are medical devices such as lifts and various other devices, which allow for disabled people to be transferred without being picked up. Instead of advocating for this surgery, there should be greater access to this kind of equipment, and greater access to home healthcare, to make it easier on disabled people and their caregivers. We should not be advocating to physically and irreparably alter the body of a disabled child, possibly against their will or ability to consent.
This is also a problem because this treatment is only being done to those with physical and intellectual disabilities. If it was so helpful in caring for those who need complete physical care, why is it not being advocated for all physically disabled people, who need complete care? It is because there is no way any of us would consent to this. Doctors know this, and yet they are recommending this treatment for the most vulnerable in our community. They know the real issue full grown adults with disabilities face is lack of access to services, but most of them are not doing anything to help us address this issue.
Disabled people have voices, but not all of us communicate verbally. Regardless of how we communicate, how we think, feel, and respond to things that affect us always needs to be considered. When we approached Ms. Field, many of us were ignored. She ended up hosting a dialogue in response to our protestations, which none of us in the disability community seemed to know about until after it was over. This dialogue upheld our greatest fears.
When you have nondisabled people responding by saying, “was Eugenics the problem or [was the problem] how we went about it?” it epitomizes how many in the nondisabled world truly see disability. The way to make the world better for people with disabilities is not to exclude us. From Ms. Field’s article that completely lacks the perspective of the disabled community, to her attempt at a dialogue that also did not include us, she systematically failed at representing the group most affected by growth-attenuation therapy… those of us with actual disabilities. The media must do better, because the disability community deserves nothing less.