Saturday, November 18, 2006

Silence = Death

Special Focus asked me to write a something about privacy and posting. I'm grateful for her request because Autism's Edges is almost a year old, and it's time for me to think about where all of this is going, and what I will make of it in the coming year.

Deciding when to speak and when to remain silent has all sorts of implications, both practical and moral, interpersonal and political. Every person of conscience who starts writing bumps up against this dilemma at one point or another, whether they're writing a blog, or a journal, or a book.

How do we speak our own truths without trampling on the privacy of others, whether they're our children, their caregivers and educators, or other family members? Where does our right to share our experiences bump against another person's right to not share their own? How can one be honest and forthright yet not set off a series of detonations that destroy every relationship in sight?

Blogs are particularly challenging. Remember how diaries used to have locks and be kept under mattresses so that one could pour out the contents of one's heart and then seal it away? Well, the blog, despite having the appearance of a diary or journal, is actually like a diary on steroids. It's as though it's being read aloud on the most popular radio station in your vicinity and then kept on replay, over and over. In other words, it's not a diary at all.

The best bloggers are acutely aware of the distinction between diary and blog. While a blog may look like a diary, in the best cases, that's a formal conceit.

Blog entries from autism parents are typically dispatches from our private worlds, but usually they are not our innermost thoughts. They're an edited version of our innermost thoughts. Self-censorship — aka editing with an eye to how others will understand us and what we've written — is critical. Though, once again, I think that some of the best bloggers create the illusion that what they've posted is spontaneous, immediate, and their innermost thinking.

For almost a year I've been posting about all sorts of medical, psychological, and educational issues related to Sweet M's neurological a-typicality. But I've been writing under a pseudonym, and have almost always hidden the identities of the care providers who've appeared in various stories. Once, when I was praising one extravagantly, I listed her name. But retrospectively, I wish I hadn't because she could google herself, come across the site, and bring it to the attention of others who did not get such enthusiastic reviews. Sometimes I've used initials, and other times I've just changed people's names, but I've been careful to avoid what might roll over into the arena where one could be accused, however unjustly, of libel.

When we had a particularly egregious experience with a psychiatric professional, I didn't post about it. I held back because I could not provide the full dimensions of the story without writing something that had the potential for time-consuming blowback. That doesn't mean I won't write about it in the future, but for the moment, I have kept that private.

Once I wrote a post that Fathersvox thought cast him in a poor light, and he was really annoyed. (Obviously I won't link back to it and add insult to insult.)

And I put up pictures of Sweet M, which I've sometimes regretted. While it seemed important to put a face on autism's edges, it's also important for her to have her privacy. Fathersvox was fairly unhappy about my using her image, and I may go back and delete those photos. Not that anything ever posted can be completely deleted. Once it's out there, it's out there.

Sometimes I wish I'd felt I could be 100% "out about aut," as Kristina Chew is, and puts it so well. But since Sweet M's diagnosis has been ambiguous, and her school placement has depended, in part, on her not being labelled autistic, I didn't think it was prudent to be completely out. And as bad as it's been this year, it was pretty great last year, and, unfortunately, is still the most appropriate option available to Sweet M.

Of course being out is a political issue, but being out for someone else is a rather more complicated question.

In the early HIV-AIDS activism of the Gay Men's Health Crisis, groups like Gran Fury and Visual Aids made it clear that taking control of the representation of being HIV-positive and/or gay, was a central part of the struggle for securing funding for AIDS research, healthcare funding, and social services. To win support for AIDS research and social services, activists had to stand up and say it loud, I'm HIV-positive and proud. Silence = Death became one of the most quoted mottos of late 1980s and early 90s. Initially having AIDS was so closely associated with the stigma surrounding being gay — AIDS was called "the gay plague" — that one wasn't necessarily dying of HIV, but rather from the maligning and hatred that stigmatized gays and limited medical care and research.

But with autism, it's slightly different.

HIV-AIDS is a disease. People with HIV-AIDS have a high likelihood of getting sick, and without treatment, of dying of other illnesses due to a compromised immune system. But being homosexual — which as recently as 1973 was considered a disease or psychiatric disorder — no longer is. That change is due entirely to activism on the part of gay women and men who basically stood up and said, I'm gay, and I'm okay — there's nothing sick about it.

Autism is similar and different. One doesn't get sick and die from being autistic. But the social difficulties of autistic people do create very real health risks. Autistic individuals have a much higher chance of being abused and/or murdered by parents who can no longer cope with both the stigma that continues to be associated with autism and woeful lack of support for autistic individuals and their families than do their neurotypical peers. There are remarkable dangers in coping with institutional authorities, for example, the police. And there are the potentially long-term implications of certain kinds of self-injurious behaviors.

But even so, it's not altogether clear that ASD — particularly as the DSM-IV-TR currently describes it — is a disease. It's actually more of a disposition or neurological variation onto which a psychiatric framework has been applied. At the end of the day, autism is more similar to homosexuality than to HIV-AIDS— it's a psychiatric category, not a disease. People once spoke of curing people of their homosexuality, much as they now speak of curing people with ASD of their autism. (Sadly some still speak of curing homosexuality, but that's a post for another day.)

So being out about being aut is more similar to being out about being gay than it is to being out about being HIV-positive. By saying "I'm autistic" one is claiming membership under the rubric that is defining one as diseased rather than different. One is, at least provisionally, accepting the language of psychiatry that inscribes one as not only different, but aberrant. The gay rights movement rejected the psychiatric label of "homosexual" and used the label "gay." The autism rights movement has come up with "autie," "aspie" (from Lianne Holliday Willey), and "neurological diversity" or "neurodiversity" (Judy Singer).

And then to further complicate the matter, many people posting about autism aren't autistic themselves — many, like me, are the neurotypical parents of autistic children. One finds that one can get into all kinds of scraps writing as a neurotypical parent. There are debates about speaking on behalf of one's child, speaking for one's child, and speaking about one's child. These are nuanced, but important differences. When one is writing about one's child one is "outing" someone who hasn't had any choice about it and who might, one day down the line, say "how could you write about me like that?"

But at the end of the day, and the end of this post, I have to say that writing about being a parent of an autie child (whether Sweet M is ultimately diagnosed as autistic or not, I'm quite sure she's autie) is among my most important work. It's vital for me because, as Mom-NOS so aptly described, it provides me with some sort of local coherence. I get to work out a sense of how to think about my daughter, myself, our family, and the social and political institutions that shape our lives in a place where I have to think things through, where people comment and support, where people offer advice, and feedback and guidance.

In the early women's movement — which I'm not quite old enough to have been a full-fledged participant in — there were consciousness-raising groups where women spoke intimately about the abuses they experienced both at home and in the wider world. The idea that the personal is political was born. But these groups were not listservs or bulletin board posts or blogs. They were intimate spaces where women could speak from their lived experience to build some sort of political analysis and action in dialogue. The internet provides a space where some of this can happen, but it's never a private space, which is its difficulty. But on the other hand, it reaches out from our living rooms, or laptops in airports, or lunch breaks in offices, and allows us to connect, to consider, and to contemplate the most crucial issues in our lives.

In the end, then I think that silence for me would equal death. On some days that feels like a literal use of death and on others a more literary or metaphorical use. And I know that Sweet M, for whatever privacy she may want at some later point, she also wants and needs an alive, active, and engaged mom who can advocate on her behalf. It's a balancing act. There may be missteps along the way, but that's one of the edgy things about living at autism's edges.


Maddy said...

As a new blogger, I have similar concerns myself. Thank you for voicing them.
Best wishes

Zilari said...

Where does our right to share our experiences bump against another person's right to not share their own?

I'm not sure yet. Which is the main reason I use a pseudonym in this particular blogosphere.

The funny thing is -- I have written things (less personal, more political/scientific things) under my real name elsewhere. Over here...I don't feel comfortable sharing my real name in the context of such things as relating incidents at work, particularly disability-related issues.

I don't know if that makes me cautious or cowardly, but at any rate, one thing that the Internet is surely bringing is a necessity for people to re-assess their concepts of privacy and even identity itself.

neil said...

Having written under a pseudonym and with my own name, I can say it feels better to use my own name. It was something I agonized over for a while, until I read a post that featured autism in an art setting and I realized that I wanted to challenge some things that were said, but I didn't want to hide behind my pseudonym, so I wrote a long post that outed myself as a parent of a child with autism. My wife at the start never wanted to reveal to anyone, even her own mother, that we had such a child, but is now more comfortable with it, so I understand where you are coming from. But if your Sweet M was neurotypical and you featured her in your blog complete with pictures, doing the things that everyone else is doing, would you have the same concerns about her privacy? I ask this because as far as I can tell she is doing all the things that are typical for her. Autism is what it is, I've just tried not to let it get in the way.

kristina said...

I think it's good, it's necessary, to write in full awareness of these issues. From the time I started writing about Charlie in June 2005, I thought it would not really be possible to "hide," especially as I have a somewhat public presence through my job. I thought it better just to have "full disclosure" from the start, rather than worry that I might be "found out." I had thought a lot about the pseudonym issue in regard to Catherine Maurice's and Clara Claiborne Park's uses of such in their first books (though Park uses her own name and drops the name "Ellie" for "Jessy" in later editions of The Siege and in Exiting Nirvana).

But the main thing, keep on writing----keep on not being silent.

MothersVox said...

Interesting responses, and I thank you one and all. Although I also have a public presence in various parts of my professional life, I think the diagnostic ambiguity we faced complicated my willingness to be out. What exactly was it that I was being "out" about? That, and the difficulty of finding a suitable school placement, have made discretion some part, if not the greater part, of valor.

Anonymous said...

I need other parents to voice what happens in their daily lives. I am so alone in this journey: my own parents dismiss my situation as "he's FINE - nothing wrong with that boy a little discipline wouldn't fix," and "he's just behind because you didn't pay attention to him when he was small, you were too busy with the twins." I know he's autistic. I have something like a diagnosis (although different professionals have called it different things, nobody is saying he's just willful - except that one arrogant bitch of a child psych, I think we all have experience with ONE). The diagnosis is mild autism, PDD-NOS, ADD with severe sensory deficits and language delay, who knows.

All I know is it is a daily struggle. I love him, I want him to be happy, I struggle every single day. I live where there isn't any support and I get so SAD and overwhelmed sometimes.

Yes, there are privacy issues involved in blogging. There are lots of issues. But I NEED people to take that jump and confirm to me that I am not alone out here, putting my child to bed in a cardboard box because that is the only way he feels comfortable right now. And explaining to the teachers why he screeches and hits if he gets pushed past where he can take it.

If it weren't for the community made by autistic parents speaking out and being different together, just about the way we get through the day, probably my son would be just the same. But my life would be much harder.