SILVER SPRING, Md., September 30, 2011 — In a world that isn't all that friendly to the autism community, it seems that parents of children with autism and autistic adults would be natural allies in the movement for disability and autistic rights. Unfortunately, that is not always the case.
All too often, self-advocates*—individuals with autism themselves—feel that parents of children with autism don't want to hear what they have to say. "There is a saying amongst developmentally disabled activists," writes one such activist in a recent blog post. "It goes like this: 'Some parents just want disabled children to speak and disabled adults to shut up.'"
These are harsh words, but they are at the heart of a conflict that recently came to a head over this very issue: When it comes to the developmental disability rights movement, who should be leading the way?
The Thinking Person's Guide to Autism, a website devoted to providing information about autism from autistic individuals as well as parents and professionals, saw a conflict unfolding on the internet last month between a parent advocate and a self-advocate and stepped in to offer them a do-over of sorts. The result has been a series of blog posts which have run over the past two weeks, with voices from many corners of the autism community writing, commenting, arguing, and hopefully listening to each other.
This particular dust-up began when parent advocate and author Robert Rummel-Hudson, who blogs at Fighting Monsters with Rubber Swords, wrote a post about a movie that used the words "retarded" and "Downsy." After describing that language as offensive to parents of children with special needs, he came under fire for having left out disabled people themselves.
Blogger and autistic self-advocate Zoe Gross, who blogs at Illusion of Competence, responded with her own post making the point that when writing about offensive language such as this, it is important to talk about the fact that these words are hurtful not just to relatives of disabled people, but to disabled people themselves.
Watching this unfold and spiral into unpleasantness, the editors at Thinking Person's Guide to Autism (TPGA) wanted to open a forum for Robert and Zoe to talk with a fresh start. "We both wanted a do-over," says Zoe, "so we agreed to come on TPGA and have the conversation again, with more people and less shouting, and see if we couldn't make something positive out of it."
The TPGA series turned into an 11-post series with eight writers and hundreds of comments—some respectful, some frustrated, some angry, and some genuinely revelatory. TPGA co-editor and parent of an autistic child, Shannon Des Roches Rosa, says that the crux of the conflict between parent advocates and autistic advocates is that parent advocates aren't always aware when it's appropriate to include or cede authority to autistic advocates.
TPGA hosted the Dialogues
There are many nuances to this issue. Zoe lists some of these that played out in the comments section of her original post as "Should non-disabled parent advocates listen to disabled advocates? Are some disabled advocates too "high functioning" to understand what more severely disabled people need? Should parents take different approaches to advocating for their child vs. disability rights more generally? Can anyone "speak for the disability community"? What is the disability community?"
These issues and more came up again in the posts and comments of the Dialogues. It is certainly worth reading each of them and following the conversations in the comments. Those conversations highlight a genuine disconnect between some parent advocates, who feel that they are honestly doing everything they can to help the autism community, and self-advocates, who consistently feel overlooked, belittled, and ignored by society—including parent advocates. The issues and nuances of this conflict are far more complex than what I can describe here. What follows is merely a starting point for readers new to this discussion.
Self-advocates described the disability rights movement as one that belongs to people with disabilities and that parents have a place in that movement, but as allies, not the leaders. This concept is hard to accept for some parents who see the battle as theirs. Certainly many of them consider self-advocates an essential part of the movement, but no more so than themselves.
Historically, however, all civil rights movements have been led by self-advocates, and the disability rights movement is no different, according to many involved in the Dialogues. One commenter noted, "Would MLK or Mandela have been such revolutionary figures had they been white?" Another wrote, "It's interesting that I read language like 'disabled adults should have a voice'—to me it should be that disabled adults ARE the voice."
An example cited of a community a little further down the road is that of the gay rights community. Gay individuals know the issues and need to be the ones to set the agenda for what they want to advocate for. Parents, siblings, and friends of gay individuals are welcomed to the gay rights movement as allies, but they are not the leaders.
It is a quick step to replace "gay" with "autistic" to see the parallels. Dismissing autistic adults as incapable of advocating for themselves merely because they are autistic undermines the whole point of that advocacy. Another common argument states that self-advocates are too "high-functioning" to advocate for more severely affected individuals with autism. Many self-advocates find this argument offensive, considering the assumptions it makes about them, but also based on the assumption that these autistics aren't looking out for autistics of all abilities.
For parents immersed in the battles of personal advocacy as well as advocacy on a larger scale, it is difficult to accept not being a central stakeholder in the movement. It is also difficult to spend years feeling marginalized by society as a whole—and, yes, special needs families are marginalized—and then be called privileged by self-advocates. We feel anything but privileged. However, in some of the Dialogues' later posts by autistic parents of autistic children, these advocates report being listened to when they act as parents, but being dismissed when they speak as self-advocates.
Robert Hummel-Hudson says of parent advocates, "We understand that we get opportunities to be heard that self-advocating adults often do not. But in significant ways, we are also silenced or dismissed by the rest of the world."
For his part, however, Robert says that he has learned that there are many things that parents say, as well as tone and language triggers that parents are often unaware of. "Our insensitivity to those triggering phrases makes for a great many missteps," he says.
"Looking back, I probably wasn't the right person to take on this dialogue," he continues. "It doesn't help that, like a lot of parents, I bring a lot of my own baggage to the discussion and my own defensiveness. Ultimately, it was that defensive posture that reinforced the walls I put up and ultimately caused me to fail, both as a listener and a communicator."
Zoe similarly speaks of baggage when she says, "I know I'm not misinterpreting anyone on purpose, which probably means they're not misinterpreting me on purpose—so we really do have the intention to learn from each other. It's just that we all have baggage that's getting in the way. I'm hoping that we can learn to talk past that baggage."
She says that she has seen moments like this in the comments section of the Dialogues. "The best thing that's happened because of the Dialogues is that when you read the comments, you can see people having these 'aha' moments and coming to understand the other participants a little better. I hope that people take away that sense of 'getting it' and bring it into their own advocacy work, both online and offline."
Carol Greenburg, a co-editor at TPGA and both an autistic self-advocate and parent advocate herself says, "A serious attempt at civil discourse about this topic on this scale with this level of real inclusion has never happened. No matter how bumpy the road gets, it's all good. A's for effort really do count here."
So where does this bumpy road lead? Shannon Des Roches Rosa says that she and Ari Ne'eman, president of the Autistic Self-Advocacy Network, have spoken about using the Dialogues to generate support for an organization for autism parents and allies similar to PFLAG (Parents, Families, and Friends of Lesbians and Gays). "The autism community needs a framework for positive interactions between autistic advocates and parent advocates," she says.
The TPGA editors wrote on the first day of the Dialogues and repeated on the last day about why they hosted this series: "Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect—especially when it affects our ability to work towards common goals."
It will be interesting to see if the Dialogues lead to long-term change. All three of the participants interviewed for this column—Zoe, Robert, and Shannon—see obstacles, but seem to have hope for a more positive relationship in the future.
"Never underestimate the power of listening," says Shannon. "Or tenacity."
* Editor's note: As with so much in the autism community, language really matters here. Some of the autistic advocates mentioned here prefer to be referred to as "advocates" rather than "self-advocates." With many apologies and much respect, I have chose to refer to them all as "self-advocates" in order to reduce confusion.
You can read the entire Dialogues series on the Thinking Person's Guide to Autism's site. Following is a list of the individual posts:
Day One: Zoe Gross, autistic self-advocate
Day Two: Robert Rummel-Hudson, non-disabled parent of a disabled child
Day Three: Ari Ne'eman, autistic self-advocate and president and co-founder of The Autistic Self-Advocacy Network
Day Five: Robert Rummel-Hudson
Intermission and Reading Assignments
Day Six: Melody Latimer, autistic self-advocate and parent of autistic children
Day Seven: Kassiane, autistic self-advocate
Day Eight: Amanda Forest Vivian, autistic self-advocate
Day Nine: Kristina Chew, parent of an autistic child
Day Ten: Paula C. Durbin-Westby, autistic self-advocate and parent
Thank you to Zoe Gross, Shannon Des Roches Rosa, and Robert Hummel-Hudson for participating in interviews. The Thinking Person's Guide to Autism book, including information on autism from autistics, parents, and professionals, will be available in November 2011. Check their website for more information. Robert Rummel-Hudson is the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter.
Jean has posted her own thoughts on the Dialogues on her personal blog, Stimeyland.
Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean's work at Autism Unexpected in the Communities at the Washington Times.
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