Doctors refusing to work with autistic children. Doctors telling the parents of physically disabled kids not to treat their treatable cancer, which would result in the children’s deaths. Doctors not knowing how to treat complex medical conditions that it’s their job to treat. Clinics with no wheelchair ramps. Deep apathy towards bothering to treat disabled children because they are collectively “not worthy” of treatment. All of this exists in the United States, despite the fact that it’s supposed to be forbidden by the thirty-three-year-old Americans with Disabilities Act. And, of course, the United States is not unique, disabled people all over the world report similar encounters with medical personnel.
As the disability rights movement has pointed out, a lot of this antipathy is empowered by utilitarian bioethics. Doctors taking ethics classes in medical schools and reading pieces in journals like The New England Journal of Medicine are being trained to think of disabled people as a threat to resource equity. So, the study’s findings anger me, but I am not surprised.
I have limited experience with the life-threatening discrimination that the children in the study experienced. Despite a life-threatening infection at birth that required pretty significant medical intervention in a neonatal intensive care unit, I was a very healthy child growing up. I had yearly monitoring of a mild seizure disorder in the form of a blood test and an EEG, and I was followed by a neurologist for that, and I needed academic accommodations for my learning disorder and ADHD, but other than that I had little interaction with the medical sphere until I found myself needing to seek inpatient treatment for refractory depression in my early 30s. (I did not get an autism diagnosis or have MRI evidence of a brain injury until adulthood) So, although I occasionally did run into a childhood doctor who said something obnoxious about my neurological disabilities, I didn’t experience the medical oppression that this study on the experiences of disabled children in the medical sphere documents. No doctor would’ve told my parents to let me die if I had gotten a treatable cancer.
But, I do see parallels between what the physically disabled children experience in the medical system and what I experienced in the Special Education system, that similarity being that some of the people in charge of those systems resent the people that it’s their job to assist. In the study the doctors complain about how taxing it is to care for disabled children in much the same way I grew up hearing some Special Ed teachers complain about what a burden it is to teach disabled children. Indeed, until the 2001 No Child Left Behind Act, Special Education teachers weren’t required to be certified in the subjects they taught or to know how to do evidence-based interventions, and teachers groups fought the NCLB so that unskilled teachers could keep their jobs, just like the doctors in this study didn’t bother to learn about how to treat complex physical disorders. For some reason, people who resent some children with disabilities sometimes become Special Education teachers, and apparently many people who resent some disabled children become those children’s doctors. So, please, potential doctors and teachers, if you hate disabled people so much that you wish we didn’t exist, at least do us the courtesy of not becoming a teacher or a physician. Go find some other job to do, where you won’t be in charge of disabled people’s lives.
I wonder if there has to be a better screening system in place to ensure that medical schools don’t admit people with an ethic of, “Oh, I want to be a doctor, but I don’t want to do anything icky like care for a child with a complex medical condition.” The powers that be need to stop behaving like they think disabled people exist to serve them. Why should disabled people have to experience cruddy education, cruddy jobs, cruddy healthcare and even death just to please you?
One thing that really lights my anger on fire, and will be the main focus of the rest of this essay, is the response the study creators got from the coordinators of a hospital equity and diversity event when they tried to present a panel on their findings. The equity and diversity leader apparently said, “That's not the kind of inequity we're looking for. We are focusing on more relevant issues, such as race and ethnicity.”
It is not necessary for MAiD to be legal for the diversity coordinator’s statement to be llogical. Not everyone with a disability is white. Equity and inclusion officers concerned with racial equity should be able to anticipate that disabled children of color will experience even more complexities and difficulty when trying to circumvent medical ableism, and that, therefore, fighting medical ableism is a racial justice issue. Disabled children of color may need specific interventions to interact successfully with an ableist medical system, in much the same way that there are evidence-based techniques created to meet the pedagogical needs of children of color with disabilities in the Special Education system. Being cognizant of how systemic racism and systemic ableism intersect with one another is what contemporary diversity and equity initiatives are supposed to be all about.
Yet, whoever was in charge of equity and inclusion at the hospital where the authors presented a panel idea decided that those needs weren’t worth her time. More generally, not intervening while disabled children are encouraged to forgo treatment for treatable cancer and suffer other forms of abuse and oppression from medical personnel is a very clear case of “silence is violence.” The disabled community-which includes people of all races, genders, sexual orientations, religions, classes and ideologies-simply cannot and will not wait quietly in the back of a line while society busies itself with solving every other social problem. That’s like forcing a group of people to constantly stand at the back of the line for water in a desert. That situation is leading to disabled people dying while we’re waiting in the line.
MAiD is one of the most extreme manifestations of that trend. Even if MAiD vanished off the face of the earth, the disabled community would still be facing other extreme forms of oppression that need to be addressed by diversity and equity programs.
Leaving disability out of discussions about diversity is a constant historical pattern in society, and it is hypocritical for any equity program to exclude disabled people from its agenda. So, I would say the same thing to prospective equity and inclusion program directors that I said to prospective doctors and teachers: if you hate disabled people so much that you wish we didn’t exist, or if you just don’t care enough about our right to exist to talk about it even once at a conference about equity, then at least do us the courtesy of not becoming a diversity and inclusion officer.
All of these dynamics contribute to the creation of a world where euthanizing disabled people is understood as a mercy rather than for what it is: society killing members of a disenfranchised people group because they are members of that group. Because equity-minded individuals ignore disability rights, the normal social safeguards against inequality and discrimination disintegrate. For instance, reporter Alexander Raikin noted on Twitter, “For all the talk about cancel culture, if you’re an academic, you can say whatever you want about people with disabilities. You can say that their lives aren’t valuable, that being dead is an improvement. You won’t get penalized for these views-it’ll help you get published.”
Indeed, and academia allowing that bigoted speech is leading to life-shattering oppression against people with disabilities. That sense of permission that academics feel to say hateful things about people with disabilities is directly tied to the fact that our culture’s vanguards of equity and inclusion ignore disability justice.
Disability and equity programs need to look at this study on medical care for disabled children and do sober reflection on the consequences of leaving disability ought of mainstream discussions about diversity. If disability justice were regularly included in social justice spaces, more people would respond to the rhetoric Raikin cites for the hate speech that it is. Otherwise, disabled people are in a no-win position politically. Then disabled children wind up being treated like obnoxious animals when they go to a doctor.
Meanwhile, Canada is absolutely encouraging its disabled children to die by assisted suicide, either when they grow up, or if euthanasia is legalized for “mature minors.” Why? Often because mainstream diversity and equity officers all over the world just sit there while disabled children trying to get healthcare are treated like worthless, resource-sucking leeches.
The findings of this study reflect a world where disabled children experience fourth class citizenship. Disabled people deserve a better world than that.
Previous articles by Meghan Schrader (Articles Link).
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