activism, autism

Medical Autonomy, Social Determination, and Self-Advocacy

Content notice: institutionalization, deprival of rights, psychiatric violence, sexual harassment/assault, medical malpractice, involuntary treatment, guardianship, functioning labels, and a description of lobotomy.

Self-advocacy, in many ways, is an attempt at survival. It’s an attempt undertaken by people who are only told they’ll survive if they follow all the rules exactly as they’re written out.

Self-advocacy is a middle finger, stuck high in the sky, telling everyone around, “no, I won’t do it.”

Self-advocacy is the kid who won’t stop screaming because they’ve been told to shut up, to listen to parents who won’t listen to them, to be quiet or else the police will come and take them away.

I write all this in the spirit of Mel Baggs’ wonderful 2005 essay, “The Meaning of Self-Advocacy.” Baggs and I are quite different in our neurodivergencies, disabilities, and our presentations of autism; however, the meaning and spirit of self-advocacy remain the same. For me, self-advocacy starts with the realization that people unlike you will not help you or listen to you.

That sounds cynical and it is cynical. However, as someone who has fairly recently transitioned from being a minor teenager stuck completely at the will of their parents when it came to … all decisions, frankly, to a young adult of age who could and had to make their own decisions, it is how I see the world. In college, I surrounded myself with other disabled and queer students, many of whom had the exact same experiences. I know several people whose parents refused to let them be tested or receive treatment for illnesses that had a severe impact on their lives when they were underage and who are now still fighting their parents for compassion and support as young, of-age adults.

As far as I know, nobody else in my family is autistic. I strongly suspect other people might be – part of self-advocacy is how intimately acquainted you become with the symptoms and hallmarks of your own disability – but nobody else has been diagnosed. My own diagnosis does not surprise me: when autism is called “geek syndrome,” when it becomes common knowledge of how many children of engineers and tech workers in Silicon Valley are autistic, when my stims and special interests fit diagnostic criteria near perfectly, when I’ve had these symptoms for years but people refuse to see them because I’m “high-functioning” ….

I’ve written about being autistic before and I figure it’s not worth it to write the whole article again but I’ll say this: the way in which the voices of autistic people, and disabled people in general, are silenced is a direct result of binary thinking, even when that thinking takes the form of “spectra.” We’re either too autistic (or disabled, or insert the adjective form of the relative disability here) to know what’s good for us, in which case we don’t get autonomy, or too high-functioning and independent to really be autistic/disabled/etcetera.

We as a society rely on “tools” of power like institutionalization and taking away someone’s ability to consent to medical procedures for themselves too often, but I can’t draw a line and say “this is where it should really stop.” I’ve seen the fragmentation and brokenness that happens when people are involuntarily committed to institutions unnecessarily: how it grinds depressed but functioning people down into dust. Parents, who take that power away from their children because they can, not because their children truly need it. I’ve been threatened with institutionalization because it was a method of control, not because I needed it.

If this sounds truly Foucauldian, it is. I don’t like to rely on the ideas of Foucault – they’re simplistic and out-of-date – but his structures of power can’t be beat. Everything looks like a prison because if you’re the wrong kind of person, if you don’t have the kind of power society likes, then everything is a prison. We live in a society that rewards conformity to the norm – even when that norm is entirely and literally unachievable for too many people.

I believe the reason why so many (mostly non-disabled) people are scared by self-advocacy on the part of disabled people is because of a societal idea that disabled people are not supposed to have power. We’re not supposed to be able to organize and we’re not supposed to be equals to non-disabled people. Taking away our legal, medical, and social autonomy is just a more progressive form of locking us away in institutions after that supposedly went out of vogue. We may be “free” to associate with our communities now, but if we’re barred from making any real decisions for ourselves and barred from associating with other disabled people in meaningful ways, we have not gained anything. There is not real freedom in a controlled life where we are held hostage by people who refuse to grant us the tools we need to function in the ways we desire to.

Despite the way autism (and disability in general) is portrayed as a huge burden that “locks” people away from “real life,” I and many, many other self-advocates feel that we and other disabled people are capable of many of the same things that non-disabled people are. We are not held hostage by our disabilities; we are refused access and accomodation by an ableist, saneist society who would like to pretend that our limitations are solely the result of our disability.

I have a friend who lives with multiple chronic illnesses and disabilities that affect her ability to stand up without fainting; yet she works as a family resource librarian at a hospial. She is able to because of a medication regiment and use of a wheelchair – things that non-disabled society often portrays as “limitations,” not freedom.

For me, coping aids like ear defenders and stim toys help me get through my day because they lessen the sensory burden I deal with and help me redirect my need to stim/move into something that isn’t as disruptive. I also knit as a way of stimming, which is productive as well as non-disruptive, and I’ve also recently considered buying sunglasses to help me deal with overly bright lights that can trigger both my sensory issues and my photosensitive headaches.

Both the mobility aids my friend uses and my coping aids give us back our autonomy. They do not trap us into dependency; rather, they enable us to do more because we do not have to devote so much physical and mental energy to things like walking/standing (in my friend’s case) or stimming in an “appropriate” manner.

Being able to “adapt” and fit into mainstream society through the use of aids, though, brings up another point: representation of disability. Obviously, some people with a certain disability are going to be more visibly disabled than others. An autistic person who is not typically verbal and relies on an AAC app on their iPad is going to look “more autistic” than an autistic person who is typically verbal. I am autistic but I look relatively neurotypical if one does not know what specific signs of autism to look for. (The psychologist who performed my most recent round of autism testing told me that I was “clearly autistic” the minute she let me; however, she has specific training and knows what to look for. Many people who do not see my symptoms as “quirky” or “shy.”)

The points I am trying to make might be best summed up by quoting Jim Sinclair’s essay “Autism Network International: The Development Of A Community And Its Culture,” which in turn quotes Michael Kennedy’s essay “Thoughts on Self-Advocacy” (first link is screenreader accessible, second is not).

1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning
disabilities and psychiatric disabilities as well as against autistic
people. As people with these disabilities often look “normal” and the
disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:

When people tell me that I am “higher functioning” than the
people they are talking about, I feel like they are telling me that
I don’t have anything in common with other people with disabilities. It’s like they are putting me in a whole different
category and saying that I don’t have any right to speak. It
upsets me because I take it that they don’t want to give anyone
else the opportunities I have been given, and that what I say
can be ignored because they see me as more capable. It is a
way of dividing us and putting down those who have more
severe disabilities or who haven’t had the opportunities to
experience different situations in life. (Kennedy, 1996)

3) If it is not possible to deny that the activists are authentic
representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

In other words, the rhetoric against self-advocacy positions self-advocates as outside agitators, too high-functioning to need the services they seek to reform (or destroy), and/or too disabled to know what’s good for them. The positioning of Sinclair’s second and third points is quite telling: even “high-functioning” disabled people will never be equal to abled people under this taxonomy. Even if we are too functional to apparently need aid or services, we are not functional enough to make our own decisions. This position reminds me of how teenagers are treated in the American legal and medical systems: high-functioning enough to face adult consequences of decisions but not functional enough to make decisions for themselves.

Furthermore, when examining Sinclair’s first point – that of disabled people as outside agitators – it becomes clear that merely imagining disabled self-advocates as abled reformers gives pro-institutionalization ableists another reason to write us off. It’s not just that we’re disturbing the actual disabled people; it’s that ableists can’t imagine any abled person wanting to change their perfect system. Self-advocates, once reimagined as abled outside agitators, can safely be dismissed as overly concerned bleeding-heart liberals who are looking for problems that aren’t there.

Leaving aside the fact that this thinking erases more politically conservative self-advocates and reformers like Justin Dart, it also restricts disability activism (which is often revolutionary and tends hard-left) to impotent niceties of liberal thinking. The “outside agitator” mode of thinking asks “you have the ADA, why would you want more?” even when disabled people are screaming about how the ADA isn’t and will never be enough – precisely because central to this mode of thinking is the liberal view that government will save you.

Of course, the government, on its own, will not save us. An absolute failing of American electoral politics is that short-term gains and rights for marginalized people are left up to the liberal-conservative sway of elections. Longer-term gains might be enshrined by our supposedly apolitical courts (hah!) but court cases take years to litigate and people can suffer endlessly without relief in that time. Too often, any sort of large-scale quick relief will be subjected to the whims of whichever party next enters office and seeks to undo the reforms of those that held power before them.1

So we’re at a point where self-advocates are dismissed as agitators and as simultaneously too high-functioning and low-functioning to “count.” Even when we are listened to, the response is too often “well, the government will work it out.”

Such a statement is a profoundly privileged one and I urge anyone who’s thinking of making it to reflect on rights they have that came from direct action, not simple government reform. Moreover, disabled self-advocates aren’t always asking for reform: sometimes we’re demanding closures of institutions and radical overthrow and redesign of the system. Consider the fact thag in institutions (including locked psych wards), asking for the most basic of changes means having your belongings and person strip-searched. Consider that often times, being in an institution means having fewer rights than being in jail or prison. Consider that Elaine Wilson and Lois Curtis, the two women at the center of the Olmsted case that declared disabled people have a right to live in our communities, were confined to a psych hospital, despite staff agreeing they should live in a supportive care community program. (Content warning for institutionalization, deprival of rights, psychiatric violence, sexual harassment bordering on assault, and medical malpractice for all links.) To call for an end to institutions and the reliance on locked wards is not a ridiculous demand in the face of these things; in fact, I would argue, it is the only humane demand.

There are, of course, failures of care in home and community based services. The mere fact, though, that people engaged in HCBS programs maintain (most of) their freedom and aren’t restricted to one campus, building, ward, or room, means that these programs are infinitely preferable to the prison environment of institutions. Most self-advocates, therefore, agree that HCBS programs should be reformed, unlike institutions, which should be abolished.

Autonomy is not just about living situations, though. This post took me months to write: in the time elapsed between when I started it and finished it, Brett Kavanaugh was confirmed to the Supreme Court of the United States. Aside from credible allegations of sexual assault against him, Kavanaugh also ruled that doctors should be able to perform elective, non-life-saving procedures on disabled people without their consent. (Content warning for sexual assault, denial of autonomy, sexism, medical trauma, and involuntary treatment at the links.) While I heard people from all walks of life speak out in support of Dr. Christine Blasey Ford, I heard little about the Doe ex rel. Tarlow v. D.C. case outside of disability communities. To be sure, more people have been affected by (the spectre of) sexual assault than have been affected by (the spectre of) involuntary treatment, but the fact that Kavanaugh may have played some part in either is heinous.

Furthermore, we live in a society where disabled and elderly people can have our rights stripped away from us in a process called guardianship, wherein another person is legally appointed to make decisions for us. It is essentially subjecting an adult to the same legal, financial, and medical restrictions that a minor child would be. Unlike most children, however, people under guardianship do not have the light at the end of the tunnel of aging out of guardianship.

When guardianship is talked about by abled people, it is often presented as something everyone might face as they grow older: something that might be inevitable but that you can make the best of. In these cases, there is often no discussion of how disabled adults can be stuck in legal guardianship from the moment they turn 18 and how there are alternatives to legal guardianship, such as supported decision-making. Despite the fact that disabled people are disproportionately affected by guardianship, our particular situations and voices are not considered. (Notice that in the John Oliver video, not one of the people profiled is mentioned to be disabled.)

When disabled people are faced with such blatant denials of rights, often based on people’s perceptions and stereotypes instead of reality, it is impossible for us not to get angry. I know people who have been institutionalized – short and long-term – as well as people who have been threatened with institutionalization simply for being disabled. Yet when we get angry, we’re depicted according to Sinclair’s principles: as outside agitators, as too high-functioning to really be disabled, and as too disabled to know what’s good for us.

But quiet complacency gets us nowhere good. Resistance is not always possible but it is often sold as wholly impossible and the antithesis of what we need. We are humans, too, but our fights for our human rights are often shushed as misguided agitation.

I can’t resist putting a media example in here, even though it’s one with a helluva lot of problems of it’s own, sans allegory. Consider One Flew Over the Cuckoo’s Nest (you can watch it on Amazon Prime or read the Wikipedia summary here), which critiques the psychiatric system of the 1950s and ’60s, but also portrays resistance against the institution as a system as futile. Little has changed, honestly, in our institution systems, other than getting rid of lobotomy and other quack “therapies.” We may not give unruly patients icepicks to the frontal lobes anymore but we’re still locking them up and portraying dissent and self-advocacy as trouble. Mildred Ratched may not exist as a person but she exists as a system and a social norm around disability.2

I’ve met many self-styled allies who will crow about how far we’ve come since the “bad old days” of the ’50s and ’60s. I wonder if that’s really true. Maybe it is in terms of institutions (though I doubt it) but self-advocates of all types are still just as reviled as they were 50 years ago.

Self-advocacy is sometimes just telling an abled person “no, you’re wrong, and I know because I’ve lived it,” because self-advocacy is too often sticking up for ourselves when nobody else will.

  1. I am not going to pretend this is an equal problem, though: in modern American politics, Democrats are much better when it comes to minority and marginalized group rights than the Republicans. (I leave smaller third parties out of this comparison for simplicity.) Nor am I going to pretend that the Democrats, by virtue of being better, are perfect: Democrats are responsible for the Representative Payee rule that prohibted disabled people who received help with finances (but did not mecessarily have any other disabilities) from purchasing firearms, as well as kicking up a huge, ableist fuss when Republicans repealed the rule. I don’t like guns but if the government is going to interfere with someone’s constitutional rights, they better have a better reason than “this person has trouble managing their own money sometimes.” 
  2. It’s interesting to note here that Louise Fletcher, the actress who played Ratched in the movie adaptation, was born to Deaf parents and was taught to speak by a relative. You can see her signing in her Oscar acceptance speech