Sara thought for a moment. She saw she had made a mistake.
-Frances Hodgsen Burnett, A Little Princess
You'd think we parents of kids with special needs -- righteous avengers that we are -- would be extra-invested in listening to the self-advocates who share our children's experiences, who in many cases used to be our children. You'd think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I'd written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You'd think that, knowing how many times even well-meaning people have dismissed my son's needs or spoken to him as though he was an obedient puppy, I'd understand how self-advocates might have very little patience for parents who patronize or disregard them.
But, I often don't get it, as I am a neurotypical parent, not a self-advocate. And when I advocate for my ten-year-old son, I sometimes overstep advocacy boundaries, or am not inclusive enough -- talking about "children with autism," for instance, when I really mean "people with autism."
If self-advocates let me know that my efforts are misguided, that is when I have a choice. I can react instantly and defend my intentions -- or I can take a step back, and try to understand why a self-advocate would take offense at something that I worked so hard on, and meant so well by. I can listen to what they are saying, rather than how they are saying it (not always easy). I can try to determine exactly what I have done that is hurtful, and ask how I can avoid doing it again. And I can remind myself that this process, this learning does not equal total and complete agreement (nor should it; if we are truly talking about a meeting of minds).
It's not easy. I am a defensive person, I have a hard time taking criticism. I also loathe conflict and want everyone to get along. Plus, I live on the Internet where instant reactions are not just possible but expected. So, instead of listening and acknowledging, instead of giving myself processing time, instead of asking questions -- I too often react on my terms. According to my expectations of civil disagreement, and my expectations of trying to understand each other's contexts.
Which is ironic, really, when you consider that I am most often engaging with Autistic self-advocates. Even those not terribly familiar with autism usually know the stereotypes of frankness, and of challenges with understanding perspectives not personally experienced. I should know that demanding diplomacy, and asking to understand each others' contexts is not exactly fair in a neurodiverse environment. As Nomatissima wrote in I’ve Earned My Anger: Policing and Dismissing Autistic Emotions:
The fact that my emotions are deemed “not appropriate” for the situation makes it all the more infuriating. It may not seem like a legitimate response to a neurotypical, but an autistic perspective is going to take certain things a lot more seriously, and will more rapidly notice when something isn’t right in a situation related to disablism. It’s not always going to be pretty, and we’re not always going to be able to sum it up in tidy little speeches. That’s okay. It should just show how committed we are to this, and what it means for us, how profoundly we care about this topic. It’s not a matter of weakness, lack of manners, or being “emotionally incontinent” (Nice imagery there, eh?)The autism stereotypes I cited above are not universal among the diverse community of Autistic self-advocates, of course. Some folks with autism are fully committed to civil disagreement. Others have clarified that it is unfair for we who rely on the (problematic) concept of theory of mind -- on being able to anticipate how others might feel and how our actions would affect them -- to expect accommodation from Autistics. As spunkykitty wrote on Rachel Cohen-Rottenberg's Autism and Empathy project:
But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.
I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic -- but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:
My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that people in my position discount their experience, and if I'm still talking, not listening?
Some of the most difficult exchanges happen when self-advocates criticize parents, and parents respond that self-advocates are not like their kids and cannot speak for them. This make my conflict-averse head spin. Because here's the thing: on the small scale, the personal experiences within the disability community may differ, but on the larger scale, and in terms of advocacy needs, our kids and self-advocates have more in common than not. Making comparisons isn't helpful, not when both experiences are legitimate -- and especially when those comparisons are tangents, irrelevant to the argument that triggered them in the first place.
The recent introduction of a medical code for wandering is a stark example in which both parent and self-advocates concerns are legitimate. Wandering can be a legitimate safety issue. Who wouldn't have wanted a way to prevent eight-year-old Joshua Robb from wandering off into the woods yesterday morning, especially as he remains missing?** But parent and caregiver concerns in no way de-legitimize the concerns of self-advocates, who know -- often from personal experience -- that codifying opportunities to restrict the movements of both children and adults can lead to abuse, due to insufficient understanding of (or attempts to understand) the behavior that led to the wandering in the first place, as Landon Bryce illustrated:
Since the wandering code will go into effect October 1 despite protests from the self-advocacy community, the onus is now on parents and caregivers to understand wandering behavior, and ensure the code is not being used to restrict movement unfairly, abusively, or due to convenience. Parents tell themselves they would never allow this abuse to happen, self-advocates know it too often does.
We parents like to think of ourselves as good people, and hopefully, mostly, we are. But do our actions back up those good intentions? We get filled with righteous indignation while watching movies about objectification by the dominant culture, films like Temple Grandin, Boys Don't Cry, or My Fair Lady. We are outraged by stories of middle school Aspergian torture. We believe, in our souls, that we would never behave so badly toward another human being. We believe that, were we ever in those situations, we would act differently. Right? Let's try to prove it.
Let's try to demonstrate that we are aware of our privilege as neurotypicals, of being outside the disability community. As was reinforced for me last month during BlogHer11's Immigration panel featuring Jose Antonio Vargas, when we're part of the dominant culture, we can't claim we aren't privileged. We are. And it doesn't matter that we didn't ask for the privilege -- we have to make choices about what to do with that privilege. And self-advocates do not have to be nice to us about it, though I think many have demonstrated exceptional patience with me.
Personally, I am trying to listen, really listen, to self-advocates like Corina Becker, who wrote in What I Want People to Know:
I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.I know I'll fail a lot, probably badly. I know some self-advocates will be really honest with me when I fail. I know some self-advocates don't care what I do, as they're working on strengthening their own community, into which parents and caregivers do not factor.
I'll keep trying to listen, and trying to act accordingly, because I want a the best life possible for my son and his community-mates of all ages. As Ari Ne'eman said at last month's Syracuse University Neurodiversity Symposium in regards to the parent and self-advocate communities,
At the end of the day, we want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them.At the end of my day, I want a world that treats my son with dignity and respect, takes him seriously, and gives him the accommodations he needs -- regardless of whether but especially if he asks for them -- without patronizing or infantilizing him. And if I of all people do not treat my son's possible future selves -- today's self-advocates -- the way I hope he will be treated, they way everyone deserves to be treated, the way no one should ever have to ask to be treated, then how could I ever demand anyone treat my son better?
**Update: thankfully, Joshua was found, but the situation is far from resolved.