I share this message from Ari Ne'man and The Autistic Self Advocay Network with you with Ari's permission.
Last May, I and other advocates crashed a party – a twitter party, to be exact. USA Today had put together a live twitter chat with the nation’s “top experts” on autism – a group that notably excluded any actual Autistic people. Unimpressed, the live chat was crashed by a few dozen Autistic adults who did a great job communicating that old time “Nothing About Us, Without Us!” spirit. Liz Szabo, the USA Today medical reporter moderating the live chat, responded fairly well, apologizing and making sure that self-advocate participants were included after all. Later that day, I got a very nice e-mail from her, promising to learn the lesson about self-advocate inclusion for the future. Mission accomplished, right?
Well, perhaps not so much. Today, USA Today ran a front page feature by Liz Szabo on mental health policy, encompassing 3,024 words over three articles and including color photos, infographics and an extensive table analyzing mental health policies across the nation. What it did not include, shockingly, was the voice of a single person with a psychiatric disability. Given the topic – one article uncritically makes the case that involuntary commitment laws must be strengthened and expanded – this is a serious flaw and one that is undeserving of a newspaper of USA Today’s national stature.
The rationale behind an error like this is baffling, to say the least. It seems hardly credible that the author could not locate a single disabled person. One understands the pressures faced by modern journalists in these times of newsroom cutbacks, but surely they can do better than this. Furthermore, the failure to speak or present the opinions of a single opponent to the expansion of civil commitment laws is unbelievable, given the stakes. Does USA Today believe that expanding institutionalization and forced treatment is so uncontroversial as to not deserve the presentation of both sides? What possible explanation could be offered for such shoddy work?
Regrettably, the problem extends beyond Szabo and USA Today, both of whom have good intentions. Most journalists reporting on disability issues today come from backgrounds in health or medicine, where the working assumption is that physicians should drive the conversation and little difference should exist between parent and self-advocate perspectives. For many in the media, reporting the voices of those most directly impacted is an afterthought, too often forgot about in the rush to meet a deadline. This outlook has real and practical consequences.
In the aftermath of the unspeakable tragedy in Newtown, the news media plays a disproportionate role in shaping the public conversation. Policymakers and the general public look to newspapers to help determine practical solutions to challenges like gun violence. When journalists ignore the communities they are charged with reporting on, we all lose an opportunity to become better educated on the issues that face our country. Beyond that, ill-advised policy solutions are uncritically promoted without thought to their unintended consequences.
This is not journalism. USA Today’s readership and the public at large deserve better. As the media continues to stoke public fears about disabled people in the aftermath of Newtown, it falls to us in the disability rights movement to make sure that they get the message. Just as our community speaks up when Autistic people are left out of conversations about autism, we should be speaking up when other groups of disabled people are excluded from conversations in which they should play a major role. In the words of our nation’s founding father, Benjamin Franklin, “We must all hang together – or we will sure hang separately.”
Annoyed? Angry? Don’t just sit there and take it – do something! Here are some options:
- Tweet your concerns to Liz Szabo, the USA Today journalist who wrote the mental health pieces, at @LizSzabo – use the hashtag #aboutwithout so we can track your interest. Be polite in your comments – but be heard!
- Send USA Today a Letter to the Editor by e-mailing email@example.com. Include your name, address and daytime and evening phone numbers (if you cannot use the phone, note this and provide an e-mail address that you check frequently). The newspaper’s website notes that letters of 200 words or less have the highest likelihood of being accepted.
- E-mail Brent Jones, USA Today’s Public Editor, with your concerns about lack of self-advocate representation firstname.lastname@example.org.
Simon Baron-Cohen on treating others as objects:
The challenge is to explain, without resorting to the all-too-easy concept of evil, how people are capable of causing extreme hurt to one another. So let’s substitute the term “evil” with the term “empathy erosion.” Empathy erosion can arise because of corrosive emotions, such as bitter resentment, or desire for revenge, or blind hatred, or a desire to protect. In theory these are transient emotions, the empathy erosion reversible. But empathy erosion can be the result of more permanent psychological characteristics.
The insight that empathy erosion arises from people turning other people into objects goes back at least to Martin Buber, an Austrian philosopher who resigned his professorship at the University of Frankfurt in 1933 when Adolf Hitler came to power. The title of Buber’s famous book is Ich und Du (I and Thou).5 He contrasted the Ich-Du (I-you) mode of being (where you are connecting with another person as an end in itself) with the Ich-Es (I-it) mode of being (where you are connecting with a person or object, so as to use them for some purpose). He argued that the latter mode of treating a person was devaluing.
When our empathy is switched off, we are solely in the “I” mode. In such a state we relate only to things or to people as if they were just things. Most of us are capable of doing this occasionally. We might be quite capable of focusing on our work without sparing a thought for the homeless person on the street outside our office. But whether we are in this state transiently or permanently, there is no “thou” visible—at least, not a thou with different thoughts and feelings. Treating other people as if they were just objects is one of the worst things you can do to another human being, to ignore their subjectivity, their thoughts and feelings.
The purpose of thAutcast is to stop treating autistic people as objects.
Talking about autistic people without including us in the conversation is treating us as objects.
This #autismchat, which USA Today said would feature "the USA's top experts," and included parents like Lisa Goring from Autism Speaks and Alison Singer from the Autism Science Foundation, but not a single autistic person. That's treating us as objects.
Report Liz Szabo, who organized the chat, wrote in response to Alyssa's objections:
I can't assume that some stem-cell researcher is going to just show up to a Twitter chat (most doctors aren't on Twitter yet and I have to teach them before the chat!), so I try to reserve them in advance. On the other hand, I was pretty sure that a good number of families affected by autism would drop in. But you know what? Now, I have met lots of great autistic self-advocate, even more parents of autisic kids, and I can be sure to "book" them as experts if we ever do this again, and even interview them for future stories.
And then she published this article that treats autistic people as a scary problem that needs to go away. As not only objects, but undesirable ones.
This recent episode of Charlie Rose featured a panel of scientists and Alison Singer, previously of Autism Speaks, now of the Autism Science Foundation. And not a single autistic person. They talk about us for an hour. They have an extended conversation about how autistic people think. And think that it is possible to do that ethically or accurately without including us. That is treating autistic people as objects.
The fact that some autistic people are nonverbal is often used as an excuse to exclude those of us who can talk in favor of the parents of people who can't. That is treating autistic people as objects.
Despite what Shannon des Roches Rosa says, the problem with this petition is not the title. It is the belief that autism can be adequately represented in the press by parents, so long as the parents talking have the right opinions. Saying "don't talk to Jenny McCarthy-- talk to parents who think the same things I do" is treating autistic people as objects.
If you care about autistic people, you listen to autistic people.
You don't keep giving attention and money to people who insist on excluding autistic people from the conversation.
Oh, let's talk about all the creepy elements in Liz Szabo's piece on parents who research autism.
1. Emphasis on a cure. Curing autism is probably impossible. When researchers like Kevin Pelphrey pretend otherwise, it encourages false hope and ignorance:
"'Dad,' he says, 'why haven't you cured autism yet?'"
Young Kenneth has good reason to be impatient — and unusually curious about his father's work, says Pelphrey, one of the country's leading autism researchers. Two of Pelphrey's three children — Kenneth's big sister, Frances, and little brother, Lowell — have been diagnosed with autism-spectrum disorders.
"I'd really like to cure autism and be out of a job," says Pelphrey, an associate professor of child psychiatry at the Yale School of Medicine's Child Study Center. "I wish I had more ideas faster."
2. Emphasis on grieving parents of living autistic children:
A decade ago, Dolmetsch was working in biophysics. He changed fields when his son, now 9, was diagnosed. Transforming the focus of his research, he says, was part of the "phases of grief" that parents often undergo when faced with a diagnosis of autism. After overcoming their initial denial of their son's condition, both he and his wife felt compelled to "leave no stone unturned," says Dolmetsch.
3. Emphasis on autistic people as a burden:
This work was made more difficult, Dolmetsch says, by the fact that caring for a child with a disability is a full-time job. Although his wife, neurobiologist Asha Nigh, supports his research, such as through managing projects and writing grant proposals, she has put her own scientific career on hold in order to care for their son and his brother, age 7. In his opinion, Dolmetsch says, his wife has earned an honorary doctorate "in getting insurance coverage for stuff."
"The finances of autism are brutal," Dolmetsch says. "The amount of continuous care these kids need is a lot. … The only thing that works at all are behavioral treatments," which, depending on the state and one's health plan, may not be covered by insurance, he says. "They're very intensive… and they're horrifyingly expensive."
4. Use of "autistic" as an antonym for "healthy":
Pelphrey didn't think much of enrolling his youngest son in one of Yale's research projects, assuming that the child would serve as a control group of "healthy" kids to their autistic siblings.
Instead, his son, Lowell, was also diagnosed with a form of autism, called pervasive development disorder-not otherwise specified, or PDD-NOS, at age 1½. In spite of Pelphrey's expertise in autism, and experience as the father of an autistic daughter, he hadn't noticed his son's symptoms.
"We honestly thought he would get a clean bill of health," Pelphrey says. "Then we found out he was developing toward autism."
5. Failure to understand that autistic people who no longer have observable disability are still autistic:
Thanks to that early diagnosis, Lowell began 32 hours a week of early behavioral therapy. He has made impressive progress. Today, at age 3, Lowell no longer has any autism-spectrum diagnosis, Pelphrey says.
"He's not on the spectrum anymore," Pelphrey says. "We kind of altered his developmental course. He still has subtle language and social deficits, and he's awkward and shy. But it's a matter of personality at this point. Frankly, he's not all that different from most of my professor colleagues. I think he will have a very different life."
Szabo is the same reporter who organized an "autism chat" on Twitter with "the USA's top experts", including researchers and parents from organizations like Autism Speaks, and not a single autistic person. In this article she assures us that "High-functioning autistic adults are also contributing to the study of autism"-- and she knows it's true because a neurotypical expert wrote it in an article.
No need to ever talk to an autistic person if you're going to write about autism, right?
And, since the article follows her agenda of excluding and insulting autistic people, Alison Singer of the Autism Science Foundation is full of praise for it:
Thank you for this terrific story. We owe so much to ALL the scientists who devote their energy and expertise to helping our kids. So often we hear about autism parents starting advocacy groups but these scientist parents are literally on the front lines of research. Thank you Kevin, Ed, and Ricardo!
USA Today is having a live chat today with the neurotypical people they consider the USA's top autism experts. Please help disrupt it by asking the reporter why no autistic people were included and the experts why they think it is okay to participate in all-NT panels like this.
The USA's top experts will weigh in, including: Dr. David Amaral of the University of California-Davis MIND Institute; Dr. Sarah Paterson of Children's Hospital of Philadelphia; Dr. Sarah Spence of Children's Hospital Boston; Alison Singer of the Autism Science Foundation, Dr. Alycia Halladay, Autism Speaks' Director for Environmental Research, and Lisa Goring, Autism Speaks' vice president of family services.
The chat is at 1:00 pm Eastern time today and is happening on Twitter.
The hashtag is #autismchat
The reporter running it is Liz Szabo (@lizszabo)
Please start contacting her and asking now why no autistic people were included.
Please ask everyone who tweets a suggestion that people join #autismchat why they think it is okay to have discussions about autism that include no autistic people.