April is Autism Awareness Month in the U.S.  All too often, the rhetoric around autism is shaped by the needs and voices of the caregivers and families of people who are autistic. Goodness knows the perspectives of caregivers and families are indeed important. As many feminist bioethicists have noted, including the incomparable Eva Kittay in her book Love’s Labor and her essay “Love’s Labor Revisited“, they are too often overlooked for both caregivers in general. As I myself have argued, we unjustly continue to overlook societal obligations to those who engage in unpaid medical caregiving for persons with illness or disability.

But attending to the needs of caregivers and families must not mean centering their needs over and against the needs of the persons for whom they provide care. All too often, those who are physically or neurologically different from the majority have little or no say in the policies and decisions and rhetoric that governs their lives. It’s not for no reason that the abiding slogan of the disability rights movement, adopted by many minority groups, is “Nothing about us without us.” Indeed, this is the slogan used specifically by the Autistic Self-Advocacy Network.

If this issue is of interest to you, consider this essay by an autistic person of what it means to handle Autism Awareness month the way it is usually handled. K. Tilden Frost, over at GeekMom, writes:

In a month that is theoretically about raising awareness of issues that affect me, my kids, and my community, I am invisible. There are very real issues affecting the autistic community: abusive therapies and “cures,” culture-wide sympathy with caregiver murders, and the total lack of acknowledgment that autistic kids eventually become autistic adults and have specific and individual support needs, to give some of the many, many examples.

For just a minute, think how it would feel to have every day of a month directed towards telling you that your life is a tragedy. If you can’t see how much that would hurt, I want you to think about what the word empathy means before I hear it misused for the 60th time since April started.

Autism awareness is useless to me and to my community. What we need is acceptance. Acceptance of autistic adults as authorities on their own neurology, acceptance of what autistic people define as the major needs of their community, and acceptance of autistic people as fully realized individuals, despite the fact that we may not act exactly like you.

I commend the entirety of the piece, as K. Tilden Frost goes on to discuss the general preference of the autistic community (vs. the autism community) for identity-first language such as “autistic person” as opposed to person-first language like “person with autism”, as well as to explain and support her claims in the summary I excerpted, above. She also covers what genuine understanding and acceptance would look like.  It is important and valuable reading for anyone with interests in psychiatric/psychology ethics, disability ethics, care ethics, caregiving, and autism in particular.

Other great blogs by autistic persons include the superb Autistic Hoya, the blog of a Georgetown University graduate with autism, Lydia Brown. Autistic Hoya recently wrote on exactly the issue of how centering the needs and concerns of caregivers and family can do violence to autistic persons:

A non autistic mother of an autistic young person wrote, triumphantly, about the time ten years ago she physically forced her kid into a crowded arena to see a show featuring one of their favorite characters, not despite their terror of big crowded indoor places but because of it so she could forcibly expose them to it. She physically restrained her kid, who was having a meltdown and maybe a panic attack, in public to forcibly drag them into the arena and even, laughably and horrifically, invoked the A D fucking A to claim she was somehow being “a reasonable accommodation” (this is eleven kinds of twisted) by carrying them in against their will.

She recounts other parents as aghast at her behavior and dismisses them as ignorant by loudly proclaiming that her kid has autism (because that’s a get out of jail free card for abuse), when another parent is literally telling her it’s obvious her kid doesn’t want to go and she should drop it. (The other parents were upset not because they don’t understand autism but because, shock, they were minimally decent people who recognized abuse when they witnessed it.)

She literally described the moment her kid got inside the arena as being “indistinguishable from his peers.”

That is the exact phrase word for word that Ole Ivaar Lovaas used to describe the goal of behaviorism. To make us indistinguishable from our peers (by stamping out the autistic) (by shocking our feet in water) (by punishing us for displaying autistic traits and rewarding us for supressing our natural selves). He founded what we know now as ABA, the supposedly evidence-based treatment for autism that every single autistic adult I know who survived it describes as abuse so traumatic they ALL have PTSD or CPTSD from it.

And she literally calls her kid and every other autistic young person “a burden.” Yes. She out and says it, directly. What we know most of you all already believe but think it’s politically incorrect to voice. (It’s not. It’s normal.)

I recommend spending some time during Autism Awareness month (or any of the disability or disease awareness months, such as Dwarfism Awareness month) checking out the personal narratives of those who actually live with these conditions, as well as the experiences and narratives of those who care for/about those who live with these conditions.

“Nothing about us without us” is more than a slogan. It is a moral demand for representation, for consideration, and for taking as our point of departure what people with needs say about  those needs and their satisfaction. To act in ways that fully respect each other as persons, we must first seek to know each other’s needs and desires. To do this, we must first seek each other out.

Editor’s Note: See also the past IJFAB Blog post by Leah Smith and Joe Stramondo, “Musings on the Value of Awareness“