Astrid’s Journal

Within the autism and autistic communities - the former being domiated by parents of autistics seeking treatment and sometimes cure for autism, the latter dominated by autistic adults who aim to have autism accepted as a matter of neurological diversity -, but also within the wider disability community, phrases like “the voice of” and “speak for” are often used. In autism, we have Autism Speaks, which is a parent-dominated organization, and Autistics.org, which claims to be the real voice of autism because it’s maintained by autistic adults, and in the blind community we have The Voice of the Nation’s Blind, which really is the NFB’s blog. All of these websites claim to speak for respectively severely autistic children who cannot speak for themselves, autistic adults, and the blind in the United States. Do they really do what they claim to be doing? I don’t think so.

It is in an advocacy organization’s nature to have a few people claim to speak for the entire target group of that organization. Even assuming that target group consisted soleley of members who chose to be members of that organization, still they are not all going to Washington to lobby their agendas. All 50,000 NFB members, for example, are not coming to the Washington Seminar. After all, the very point of an organization is so that not everyone has to speak for themselves, in which case they would all be lost in the mass of voices. So the members usually elect a board of directors or representatives for specific events, and these people are supposed to speak for the whole organization. So far, so good. The problem is that the organization’s target group usually is not limited to its members, and even if it were, the organization’s agenda will affect people outside of the target group. For example, the NFB opposes audible traffic signals and tactile warning strips in most circumstances, cause competent blind people are assumed to be able to travel safely without them and having this accommodation in place might send a negative message to others about the blind, to name a few reasons. So at their annual convention, the NFB approves resolutions urging the government to limit the use of audible traffic signals and trctile warning strips. The government listens and audible traffic signals and tactile warning strips are not placed or may even be inactivated. Whom does this affect? Obviously the competent blind travelers for whom audible traffic signals and tactile warning strips are not necessary and who, hence, adopted this resolution. But the NFB has only 50,000 members. There are 1.3 million blind people in the U.S. Many of them may not be as competent at traveling as those in the NFB are. It may not have been intended, but the NFB, with this policy statement, would’ve affected their lives, too. It’s the very reason why there are two organizations of the blind in the U.S. And yet the NFB is calling itself “the voice of the nation’s blind”. Clealry not.

Much in the same way, Autistics.org cannot claim to speak for all autistic people. After all, right now I can only think of five people who regularly contribute articles: Amanda Baggs, Laura Tisoncik, Joel Smith, Phil Schwarz and Michelle Dawson. How can they possibly represent the whole autistic community of North America, much less the rest of the world? Many people might agree with them, but there would still remain many who did not. After all, there are enough autistic people who support the autism community, and many more who don’t think about autism politics at all. And there are also many who don’t have effective communication skills. Who will be speaking for them?

Let’s use an analogy from another group of people who presumably cannot speak for themselves: people with severe brain damage, like Terri Schiavo. In Terri’s case, both Michael Schiavo and the Schindler family claimed to speak for her and to know what she would’ve wanted. But Terri couldn’t have wanted two things, so who was Terri’s real voice? Whom you choose likely depends on your position on such issues as euthanasia. I, for example, would side with the Schindlers cause I’m pro-life, but someone who herself wishes for euthanasia or has a family member who does, might side with Michael Schiavo. My father once made a statement, in a similar discussion to the Terri Schiavo case, only it involved a child, saying that this child really was incapabel of having a will. Hence, it would be a waste of time to wonder what she would’ve wanted: the decision was now with the family. While I strongly disagree with this as a normative thing, it makes quite a bit of sense in defining what actually happens. After all, neither Michael Schiavo, nor the Schindlers, were actually speaking for Terri. They were all speaking for themselves. Perhaps Michael Schiavo couldn’t cope with seeing his wife in the bad state she was in, cause he loved her so much. Perhaps he couldn’t deal with caring for her anymore. Perhaps he wanted her inheritance. This is not meant as a value judgment, it’s just meant to say that he was using his own interest as a frame of refernece. So were the Schindlers. Maybe they couldn’t deal with the possibility of losing Terri. Maybe they hated her and wanted her to suffer. I cannot think of any plausible yet bad reasons for the Schindlers to want Terri to live, but perhaps someone who supports euthanasia can fill me in on that. In any case, they were not speaking for Terri. All they were doing, was speaking from their own perspectives as Terri’s parents. So are autistic children’s parents when they claim to speak for their autistic child - and so are parent’s in general when they claim to speak for a minor. When a parent wants their child to be cured of autism, it really isn’t cause he knows autism is horrible to the child. After all, he cannot look inside his child’s mind and see what autism means to him. When he himself is neurotypical, he also runs a risk of not being able to see the barriers a neurotypical world is imposing on autistic children. What he does know, is how living with an autistic child affects him as a parent. That is in fact what most conventional autism awareness is all about. And I don’t think that’s intrinsically bad. I believe families have the right to speak their minds about how living with an autistic child (or adult) affects their lives. But this is vastly different from speaking for that autistic child or adult. People need to realize and acknowledge that: there is nothing wrong with speaking for yourself, or even speaking for other families with autistic children if they are in the same organization as you and you happen to be a board member, but don’t claim to speak for autistic people.

Now, can autistic people, like those on Autistics.org, speak for autistics? Yes, to a certain degree, just like the NFB can speak for the blind to a certain degree. That is, when people with high-functioning autism were to claim that autistics should be valued cause they are so intelligent, they could legitimately be accused of not speaking for lower-functioning autistics - and, even though I’m high-functioning, they wouldn’t speak for me, either. Same if they denied that autistics exhibited self-injurious behavior, like people in the autism community claim. The thing is, with these statements, autistics would be generalizing their own traits to be all-inclusive of autism, like the blind in the NFB consider being able to travel safely without audible traffic signals to be universal amongst the blind.

Shortly after I was labeled autistic, I wondered whether I could still remain an advocate for autistic civil rights. The reason was, and to a certain degree still is, that I do see myself as having problems. While I cannot tell whether these are due to my autism, I assume they are cause my having them led to my being labeled. Then, when I read the Autistics.org website, I realized they didn’t claim autistics didn’t have problems. In fact, one of their aims is to connect autistics with appropriate services. Furthermore, some contributors with more severe disabilities than I were acknowledging their difficulties. So really autistic advocacy isn’t about bragging about how great being autistic is - and it shouldn’t be.

Now, can the people at Autistics.org or any other autistic advocacy agency claim to speak for low-functioning, non-verbal autistics who allegedly cannot speak for themselves? Not directly, cause they can’t tell what these children or adults would’ve wanted any better than their parents or relatives can. All they can do is to offer insight from an autistic perspective. I do feel autistic people are a more adequate “voice of autism” than families, but I don’t think they can speak for specific autistic children, or that tehy will necessarily speak for all autistics. After all, each individual and each organization or online group still has its own goals. So I think Autistics.org has the same right of calling itself the real voice fo autism as the NFB does with the blind: they are autistic people speaking from their perspectives as autistic people, but there will always be exceptions to the assumptions they make about autistic people. So far, I haven’t seen any in specific cases (including cases where the parents said their child was very different from autistic advocates), but I encourage autistic people and their families to point them out, and I assume so would the Autistics.org staff and other autistic advocates.

By the way, I do not claim to be the voice of autism or anything like it. Neither do I claim to speak for the blind - or have I ever claimed this. With regards to autism, I’m not even sure I speak from an autistic perspective - cause, while I’m autistic, I held the same opinion I do now when I didn’t yet know I was autistic and I didn’t think I was. My opinion on audible traffic signals, or my opinion on anything for that matter, should not be interpreted as typical blind people’s opinion. Neither do I claim my position on autism issues is cause I’m autistic - in fact, I’ve been having some serious problems with this concept. When I post factual information (or what I hope is factual) about autism or blindness, this should be interpreted as coming from a researcher’s desk, sometimes with some personal examples thrown in when I feel I have the understanding to do so. I have enough practical understanding of my blindness to speak from a blind person’s perspective when I write about blindness. I do not have this understanding regarding autism yet. Hence, I do not claim to speak from an autistic perspective even if I really do - in the sense that since I’m autistic, I cannot speak from any other perspective. I hope I will eventually get that practical understanding, but more cause I am looking to understand my own situation than cause I want to be able to claim to speak for autistic people.