YOU MIGHT BE A CUREBIE IF . . .
For me, the effort to “cure” my son means that I want to see every impediment removed that might otherwise prevent him from achieving full independence in a world that is often unfriendly to neurotypical and autistic alike. I believe that many of his deficits (oops, there’s another “fighting word”) result from physical conditions that can be ameliorated. The point of this post is not to debate the validity of that belief, but rather to explore the politics of being a “curebie.”
“Curebie” is the word that some critics use to describe people like me. I suspect it is meant as a term of derision, but I refuse to see it that way; I guess I am embracing my curiebiedom.
In any event, a blogger who refers to herself as the Autistic Bitch from Hell (or abfh), has given us a definition of curebieism that frankly confuses me. I no longer know if I’m a curebie or not.
While I was reading blogs yesterday, I came across a post by a worried father who believed that autistic activists were opposed to any attempt to improve an autistic child's health. The father wrote that he was not trying to cure his daughter’s autism, but he was afraid that when she grew older, she might hate him for giving her vitamins and a healthy diet.
. . .
Then I started to wonder if his misconception about autistic activists came from reading rants against “curebies,” which usually have no definition of the word. I decided that it would be useful to clarify just what goes into the curebie mindset and why conscientious parents who care about their children's health and well-being are not curebies.
The defining characteristic of a curebie is a fanatical desperation to destroy a child’s autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs. The child ceases to be seen as a sentient person and instead is treated as if he were a battleground for a cosmic struggle between good and evil. Jonathan Shestack, co-founder and president of Cure Autism Now, exemplified this mindset when he wrote that autism parents do not have a child but “a shell, a ghost of all the dreams and hopes you ever had.”
Well, I happen to disagree with the quote attributed to Mr. Shestack. My son is not some empty shell, and I have never particularly stopped to think about any particular dreams I had or have for him. My only hope for him has always been to find his own place in the world. His ASD seems to stand in the way of that, but it is not some inherently evil force. It is a problem: hopefully a solvable problem. So have I been living a lie? Am I not a curebie?
Some of the comments to abfh’s post add to my confusion. In particular, David Andrews and Joseph, both of whom I have long disagreed with on so many questions, each voiced disagreement with the seeming article of faith among some quarters that all curebies harbor a secret desire to kill our children. After that refreshing acknowledgment that we are not all monsters, Mr. Andrews had this to say:
. . .much as the more vocal ones from the ‘curebie’ groups have this dramatic way of looking at things, I’m not sure that Wade Rankin is the same as these others, and I'd say that most probably aren’t... just those more vociferous ones.
I certainly appreciate the fact that Mr. Andrews believes me to be somewhat reasonable, but the key to understanding the situation lies in the phrase “most probably aren’t,” although my understanding may not truly be what Mr. Andrews intended. He probably only meant to convey that all curebies don’t fantasize about killing our children (which, in fairness to abfh, is apparently conceded as she edited her post to correct what she referred to as a “generalization” by noting that only “some” curebie parents feel that way. I certainly don’t want to open up the debate as to who may actually have such thoughts, as it puts me in the position of speaking for another. (Personally, I cannot conceive of any justification for killing one's child.) What I found noteworthy in Mr. Andrews’ comment, whether he meant it this way, is the implicit acknowledgment that there is not one uniform set of values and opinions held by curebies.
Whether any of us like it or not, we all find ourselves divided into subcommunities of what I have been calling the “greater autism community.” That doesn’t mean that all those we think of as being in the “neurodiversity” camp share the same exact opinions, nor does it mean that all “curebies” take the same approach to every issue. Each of us holds differing opinions as to the nature of autism and the correct response thereto, those opinions being formed primarily by the experiences of our individual families. Yet we find ourselves grouped into general subcommunities because Kevin Leitch finds he has more in common with Kathleen Seidel than he does me, and I have more in common with Erik Nanstiel than I do Kev and Kathleen.
That is not to say that I feel comfortable sharing a subcommunity with all curebies. I have done my fair share of wincing in the last year or so, and I feel reasonably sure that some members of the neurodiversity subcommunity have felt likewise about comments from within their group. But the fact that I have those occasional feelings, or that I sometimes avoid using the word “cure,” does not really make me less of a curebie. I know because abfh has given me the ultimate answer:
Here’s a quick test for any parent who may still be unsure of what curebie-ism is. If you care whether your autistic child thinks you are a curebie—you’re not one.
What is raised here is an ethical question that is impossible to answer with certainty. As my friend, Ginger, once said, in response to a question asking who we were to decide that our children needed curing:
Who are we? We are their parents.
Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold.
We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.
Although I hope my son approves of our response to his ASD (and I believe he does and he will), that is not something I spend a lot of time worried about. This is how I’ve answered that question before:
One of the more aggravating criticisms often directed at us is that we desperately seek a cure not for our children’s autism but really for our own shattered dreams. Nonsense! As the father of two older, neurotypical kids, I can confidently state that I gave up on having my children live out my dreams a long time ago. I simply want all of my children to live out their own dreams. But I still must confess that I have one dream about my young son. In my dream, he has reached the rebellious stage of adolescence. He angrily confronts me, and he demands to know how he could possibly be the offspring of someone so thoughtless as to deprive him of an integral part of his personality. Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.