Wednesday, May 29, 2013

Who and What Matters

This post by Stephanie Zvan is fantastic, and you should read it and maybe also the liveblog of the presentation it is commenting on. I'm not going to spend too much time rehashing either of those posts, because they're fairly nuanced and I think they're worth reading in their entirety. Instead, I'd like to talk about the thesis of Zvan's contribution--that what we value winds up determining who we value. She has some really great examples in the post, and her call to action is compelling.

Looking at it through the lens of the communities I'm involved in--not just atheism, but also the autism, neurodiversity, and disability communities--it begins to shed some light on exactly what's happening in some of the core conflicts I keep running up against. For instance, when a parent who chooses to view autistic adults as important allies and sources of insight is repeatedly given grief over her views. Or when a mixture of parents and "professionals" decide for themselves that certain autistic voices are "too high functioning" to represent their own children, while others are either inauthentic or "low functioning" and therefore unreliable.

When I see these things, I have my gut-level reaction of "FUCK YOU" pretty quickly, and usually I retreat from writing about the experience for a while. After I've processed that initial reaction, though, what becomes apparent to me is that the people who are dismissing or minimizing autistic voices are not doing so because they disagree with us, not really. They're not doing it because they have considered what we have to say and what our journey to our current station in life has taught us.

They're doing it because we don't fit into their definition of what matters.

The parents who believe that their children will always need intensive personal assistance for most of the day-to-day tasks involved with living, such as feeding themselves and hygiene, when they dismiss us, are not necessarily doing it because they don't believe that communication will ever be possible. They're doing it because, in their immediate hierarchy of what matters, that communication has taken a backseat. The things they stress instead--respite, assistance, long-term living plans--are what they have decided matters. The people who promise to give it to them--either by stepping in as the "experts" and taking control of the child's living situation, or by offering a "treatment" that will "fix" certain behaviors--are then going to be the people who are seen as mattering.

This happens for two reasons. The first is that the "expert" is a gatekeeper. So many resources that parents need access to require support, referral, or some other kind of endorsement from an "expert", and that creates a situation where deeply questioning the "expert" opinion might lead to a lack of access. After all, from the "expert" point of view, there is no progress to be made with a patient whose parents will intentionally undermine your treatment attempts.

The second reason that this happens is because parents are focused on their own needs. It's not me blaming or me accusing to say that when a parent talks about an autistic child's needs as "burdens", "unending responsibility", etc., that the language they are using is centered on expressing the parents' needs, emotions, and wish for assistance for themselves. Most of the time they view this as also being good for the child (because who benefits from an over-exhausted caretaker), and it is framed as "for" the family. I don't agree with this way of looking at disability, and I don't view people who claim that having to live with a disabled family member somehow makes that disability "belong" to the entire family, but I understand how the viewpoint is constructed and why people do believe in it.

When self-advocates and activists* challenge this hierarchy of what matters and stress autonomy, consent, and lifelong supports such as employment training and education that is not neurotypical-normative, they are essentially telling these parents that what they think matters does not. It can be hard to hear, and it's not surprising that there's some pushback to it. Step back for a moment, though, and take a long look at what winds up happening when that pushback becomes outright resistance.

Parents who prioritize "correcting" certain behavior over building communication, and who prioritize "treatment" over empowering autonomous choices, wind up with assumptions about what behavior is communicative and what is not. They wind up picking and choosing what to view as communication according to what they expect a child without autism to do to communicate, viewing any behavior outside that norm as "aberrant" and as something that does not matter. In doing this, they dismiss attempts at communication that might contain very important messages, such as "I don't want this" or "that hurts".

All conscious human behavior is communication, at some level. It might not be communication that all of us can decipher, but it all stems from us either explaining something to ourselves or to others and then making decisions about it. All actions send some kind of message. I'm not trying to say that they are all competent messages--in extreme cases of dementia, for example, the responses can be confused because the person misunderstands who is there and what is happening. But it is still communication, even if it is distorted by a cognitive issue. As such, it is important to respond to it with compassion. It matters whether or not someone is in pain, even if you think that they don't recognize you.

Any way of approaching disability that loses sight of this, and that treats certain behaviors as not-communication, is saying that only certain kinds of communication matter. That competence is only competence when it is expressed in a way that the parent/caregiver/listener prefers. This is not the way to approach opening communication with someone that you believe is having trouble communicating. This is not the way to make sure that you are taking every opportunity to know your child.

Thankfully, not all parents are like the hypothetical parents in this entry. Some parents are deciding that all communication matters. Some are deciding that the child will attempt to communicate in various ways, and that they should be using every method possible. Some are even deciding that it is their responsibility, as the older and more mature party in the communication, to decipher the child's message, and not the child's responsibility to learn the parent's method of communication.

Those parents are deciding that their children matter more than their children behaving like other children matters. Those are the parents that matter to me. They are the ones I want everyone to hear, and since they matter to me, I take Zvan's advice, and I promote them. I let them know that they matter.

You should, too. If you're a parent and you're reading this, you should go out of your way to help make parents that want to communicate with autistics matter. Retweet them. Blog about them. Link back to them at every opportunity. If you're autistic and you read this, consider spending some time in parent-space (if you haven't already) and promoting the best examples you find. It will let the others know what you value, and it will build bridges that matter, not just bridges that are made of calls to civility and unity and other vague concepts that might not actually contribute to us realizing our goals.

As for the experts? They will change when they see that they will cease to matter if they don't.