Friday, October 4, 2013

Autistics, Media, and Misrepresentation

Paula Durbin-Westby is an Autistic advocate and an autism parent. She and her son recently appeared in the PBS P.O.V. documentary Neurotypical, a film meant to challenge public perceptions of Autistic people as well as allow Autistics to represent themselves. Paula’s portrayal in the final version of the film, however, was not at all what she was expecting. We talked with her about the distress of being publicly misrepresented as an Autistic, as well as her recommendations for filmmakers and other media types hoping to accurately portray Autistic experiences.

What was your goal in agreeing to be interviewed for Neurotypical?

My point was to counter pernicious media assertions that Autistics (and other people with neurobiological disabilities) are incapable of parenting and relationships. Unfortunately, I think the film’s portrayal of me has actually reinforced some of those assertions. 
I don’t have any problem with being shown as disabled, or as Autistic. I would be perfectly happy looking, sounding, and being disabled. Unfortunately, my disability is not shown in any substantive way, except for the fact that I am wearing headphones and I rock a little bit. 
I do have a problem with the focus on my marriage being so out of proportion to the amount of filming done, the things we had talked about, and the interests and goals I had brought to the film making process.
Ironically, I had actually asked the filmmaker to show some not-so-great things about autism, quipping “maybe an argument,” but I had no idea that my relationship problems would become the focus of my part in the film and that my marriage would be used as a vehicle for hooking interest in it. 
I had told the filmmaker, in an email the night before the filming with my husband, that I did not want to talk about my finances, though I ended up being the one to bring them up when my husband tried to blame our relationship problems on my diagnosis). Part of why I trailed off and did not comment after a while was that I did not want to continue the conversation or the filming of it.
I also thought that, if anything, those topics would be a little bit of my part, given that the filmmaker had told me that I would have a somewhat significant part in the film – and as my image figures significantly in its marketing materials. I never expected my part to be so hyperfocused on the marriage.
What are some of your other concerns about the way you’ve been featured in Neurotypical?
This film is not really about my life; it is the filmmaker’s creation. Since it does not have aspects of my life that I want in the film, since it implies things about my life that are not true for me, it is not about me. It’s not my story. It’s not about my life as an Autistic person. It is about the filmmaker’s vision for the film itself. He has been clear about that through both interviews with him as a filmmaker and the marketing material -- I have been assigned a storyline by the filmmaker: 
  • “Newly diagnosed” (not true at the time of the filming) 
  •  “Coming to terms with her diagnosis” (not true at the time of the filming)
  • “Disintegrating marriage,” (true, but featured disproportionately)
  • Bubblydaydreamer forced to deal with financial anxiety” (where on earth do they get “bubbly daydreamer?!” and why do they use it in marketing material?)
  • The “success of my marriage” hinging on the agenda-laden question of whether or not Autistics and neurotypicals can have fulfilling relationships” rather than also including the facts and my point of view about the finances (which the filmmaker did have access to, via my emails to him, and through what I actually said in the film).
  • Using what my husband said as “my” story! He actually has more words than I do in the movie, the marketing materials, and the “lesson plan” questions. The “lesson plan” is materials based on the film that are to be used in middle schools, high schools, library discussions, etc. 
So, my part of the film is not the “point of view of Autistics” after all. All of that storyline about the marriage was made up by the filmmaker and PBS, and I think made all the more harmful by using just that bit of the actual footage.

And why does Jonathan Mooney, who wrote “The Short Bus,” who is not even Autistic, get to talk over me in the film? Why don’t I get to talk about neurodiversity and my own neurology? I realize that it’s a film technique, a voiceover thing, but I really do not appreciate it, given the fact that I don’t, for example, do a voiceover over someone else. 
Mooney is held up as the expert, whereas my own voice about neurodiversity and disability rights activism is effectively erased. So the film does me no good in the “disability job market sphere,” either. The only people who know what a good public speaker I am at this point are people at Autreat and a few other venues at which I have given presentations. I will say that the hosts at various places I have spoken have commented that I am a good speaker and engage well with the audience. 
Also, in the film I don’t talk about autism. I talk about my diagnosis, which is something I am not interested in talking about, but which is the one thing that non-autistics always want to know, so they filmed me explaining that to them. “When did I get a diagnosis, am I self-diagnosed?” Autistics meeting each other or getting to know each other typically don’t even ask about a diagnosis. It’s not that interesting, actually. Talking about when one got a diagnosis is not the same as talking about autism.
It did not help after all to mention that my problems with my husband were financial, because now film viewers get to weigh in on whether or not they believe me. An autism expert was invited to an online screening by PBS. This is what she had to say: 
“This scene is interesting in that once autism is labeled, they have an ahha [sic] moment, the person isn't just odd. And with this couple it took a turn for the worse.”
Nothing I have ever said about my financial situation has been a lie. But now, everyone who sees the film gets to decide whether or not my relationship issues were due to autism or finances. I am trying to raise a child and pay a steep debt, and it only damages my situation further for people to be commenting about it. In order to make sense of what I mean by steep debt, the cost to me is about $280 per week for the next 14 years, and I will have been paying that for a total of 21 years. This is $280 a week for a disabled person who works two part-time jobs with no benefits.

What would you change about your participation in the film?
In earlier correspondence with the filmmaker’s production team, I got responses saying they were not going make some of the changes I had requested at that time, so I stopped corresponding with them about the film. I stopped trying to get the filmmaker to take out the blurbs about my marriage because I did not think I could -- which was obviously a mistake. So the misinformation on the filmmaker’s website went on for several years, and also appeared in reviews, which I did not catch until I started looking for them. Certainly no one sent those to me; I think they might have been hoping I would not notice them.
PBS and the filmmaker finally did make some of the changes I requested. But this was only after I got through to someone at PBS, only six days before the film aired, after a couple of years of the film’s being marketed using damaging material.
The material PBS finally removed was exceptionally objectionable. It directly implied autism in the “success” of relationships with non-autistics. The film was aired on July 29. On July 22, some of that egregious material still remained, and I had to contact PBS and the filmmaker several times to get it all removed.
After the film aired, I continued to look for mentions of it online. I found that on the resources page, PBS had listed an anti-Autistic group, and had NOT listed the Autistic Self Advocacy Network (ASAN), www.autisticadvocacy.org. I wrote the following to PBS:
“One of the reasons I wanted to participate in this film in the first place was to promote the Autistic Self Advocacy Network, because I was working extensively with the organization at that time. It is a bit odd that this important organization did not make it onto your list of resources. I guess I should not be surprised, but I am. Ari Ne'eman, the founder of ASAN, has been on the Interagency Autism Coordinating Committee (IACC) and was the first Autistic person to be appointed to the National Council on Disability. People need to know our history, and you can't talk about our history without talking about ASAN.”
I do want to say that PBS and the filmmaker have worked with me, but it feels like too little, too late, plus their link fact-checking has been sloppy or nonexistent, so I am the one who constantly searches to find the bad stuff and report it to them. I know that they did not want to make me uncomfortable, but the film was already out there, with the marketing, and the links, and they were not able to think through or understand the negative impact it would have on me.
Some people might think I am insisting on too much, but as long as I have to be in the film and have my image all over the place, I am going to have a say in what they put on their site.
How has being mischaracterized affected you personally?
Heightened anxiety and stress. Some people might think I am this stressed out because, well, Autistic people just get stressed out. But my anxiety about this film goes FAR beyond my typical level of stress. It is almost as bad as the stress I had when my husband pressured me into refinancing the house when I did not want to. 
I experienced anxiety when I first saw the PBS promotional material that singled out my husband’s comment about “Where’s the accountability?” and did not include anything I said, the Autistic person’s point of view that the film purports to show. The marketing material has constantly focused on my husband’s feelings about my diagnosis, claiming that I am unaccountable, that I have a new sense of “entitlement” that threatens the marriage, and other unsubstantiated misinformation. 
I experienced a great deal of anxiety when I saw an “interview” I had not actually done, and finally figured out how it happened. I did not interview at all, but something I sent to the filmmaker was copied and pasted into an interview I knew nothing about. The interviewer claims she “got a chance to speak with me” but I never did communicate with her at all, nor was I asked by anyone to be interviewed. 
And, I experienced such anxiety that I stayed up for 27 hours the day I found that PBS had linked me to one of the anti-Autistic groups I have spent significant time countering over the years. PBS subsequently removed the link.
This is not my typical anxiety, which is at a much lower level (although fairly constant because of the permanent money problems). 
If I start thinking about how one of the autism hate groups might use the film, I become extremely anxious and so I am trying to not think about that possibility but to make plans to methodically do searches for instances of this, if they ever exist, and to quit blaming myself, which I can’t seem to do yet.
If this sounds like I am being “ungrateful,” do remember that I do consider most of the footage of me to not be doing me any favors, but to be causing me problems, some perhaps unforeseen, like what will happen now that the film has attracted the attention of people whose “work” against people with disabilities I have countered for years. After the film was aired on PBS, I checked every few days to see what was being said about it (and me, unfortunately). During this time I found things like the “interview” I never did, links to opinions about autism and about me and my family that made me cringe, and this kept me up a lot of nights being very anxious. 
As an aside, the irony of my husband asking where the accountability was … I was being accountable by working overtime to pay bills. That’s why I learned I was Autistic. I was taking on so much extra work after the refinance that I was working as fast as I could on an extra book about psychology, which is where I saw the term PDD-NOS and almost did not even look it up as it did not need to go in the index, and I was working against the clock to get the “extra” work done so I could pay bills.
How were you expecting to be characterized in the film? What did the film miss about you and your work?
I was expecting more about parenting. I even sent an email to people the day after the filming, saying how excited I was that positive aspects of Autistic parenting would be shown. And I do like the footage of me with my child, but my parenting is not even broached in the film other than seeing me with my son a couple of times. Why wasn’t my being an Autistic used in marketing materials? (Or anything other than that marriage stuff?) I don’t get to say anything about autism or neurodiversity much, except for that bit about Ari telling me, in the first email I ever sent to a group of Autistics, that he did not hide his neurology and he let his actions speak for themselves. That’s a nice bit.
I was also hoping to see some of my autism and disability advocacy work. Jim Sinclair, founder of Autism Network International (ANI) and Autreat viewed the film and told me, in private correspondence, but they interviewed you and had nothing about any of your other advocacy work at all!
Some people have said, in response, “Well, it’s not a film about advocacy.” But since advocacy work is a big part of my life, and this is purportedly “my point of view,” you would think that at least some of that material would be used. And, it is a film about advocacy. Of course it is. It does not go into details about specific advocacy initiatives, but other people in the film comment extensively about the neurodiversity movement, which is about advocacy. 
At the end, the credits do say that I am on the Board of the Autistic Self Advocacy Network and that I advocate tirelessly for disability rights. But nothing of that comes across in the film. Hopefully people are reading the credits and not getting up to get snacks at that point.
Because I smiled, and did not look serious, one reviewer interpreted that as me not being able to deal with reality. That’s the guy who called me a “bubbly daydreamer.” I realize that the film was made for neurotypicals, not Autistics, but really, there’s a lot more that could be said about autism, and I think I must have said something about it in all that filming, something that might be geared toward Autistic people. To code my smiling (which neurotypicals often complain that we don’t do enough of!) as “airheadedness” ensures that I won’t be taken seriously by anyone reading that review. That’s the blurb that was used to make the promotional material, by the way. 
I was also expecting to be in the film more, given that I was told that the film followed three people, one of which was me. In the original 88-minute version, I did not come into the film until over 2/3 of the way through, and then it was to primarily focus on my marriage. Because I am not in much of the film, I don’t know how it can be said to “follow” me. I would think that a person who does not come in until most of the film is over really should not be the focus of marketing, but it’s fairly clear why that happened. The story of a failing marriage where autism is called into question sells films. It sold this one to PBS.
What are your hopes for how the film will be received, given how upset you are about your characterization?
The best thing I can hope for from this film is that it does not have much of an impact and that people forget it. I really hope that at some point I will forget it. I try to already; it makes me feel so anxious that I try to put it out of my mind except when I am checking to see what new things have been written about it (which makes me more anxious, but I do want to see what is being said). I have not been able to promote it at all. Why would I do that to myself?!
I am even hoping that some day the filmmaker and PBS will decide that, since they can’t market it using my marriage any more, there is really not that much of a point of having me in it, and do a version that takes me out completely. Since I did not come in to the original until more than 2/3 of the way through, I imagine they can just remove my section, leaving most of the film intact.
What do you want other Autistic or autism community interviewees to learn from your experience? What do you want interviewers to learn?
Autistics (and parents) are a vulnerable and inexperienced source and need to be safe when being interviewed for movies, magazines, etc. We need to change the paradigm about how people talk about us and use our lives to make their livings. 
Solutions include having the right to view and decide about material used up until final editing of the work. This “takes power away” from journalists and filmmakers, but it is more honest. Sacrifice a bit of your power over your informants/subjects in order to achieve an outcome that will be desirable for all.
I do not think that the Filmmaker Knows Best, just because that is the person who was making the film. I think the filmmaker did not think through all of the implications of me being presented in this way, any more than I was able to. Other people, including other filmmakers, have tried to tell me that this filmmaker is my ally. I don’t think so. Too much has gone wrong. He is a nice person, but he does not know how to represent me or my point of view, and some of what he has said about me in interviews is questionable at the very least.
I am also concerned that people too easily confuse the idea of filmmaker as an artist with that of being an expert on the material being filmed. A horrifying example is notorious autism pseudoscience proponent Andrew Wakefield’s partially completed documentary ”Who Killed Alex Spourdalakis?,” which is titled as though Alex’s murder is some sort of conspiracy, even though his murderers -- his mother and godmother -- are well-known and in jail with no bond.

--> Seeing people take filmmaker’s versions of stories as truth is especially distressing because of the recent spate of murders and attempted murders of Autistics and disabled people. Very shortly after Wakefield’s film’s claims that Alex Spourdalakis died due to lack of Wakefield-approved “supports” was promoted via an “investigative journalist” at CBS News, another parent attempted to kill her child, prompting speculation that the attempted murder was a copycat crime.

I am not the only Autistic person distressed by a filmmaker’s misrepresentation. Sharon daVanport, a fellow Autistic advocate and activist, had this to say about non-autistics interviewing Autistics:

Paula and I have discussed our disappointing film experiences in detail and we've been a source of encouragement to one another – it’s good to know you’re not alone when you’re feeling traumatized. As she already explained, filmmakers have a responsibility to represent their film subjects with accuracy. When filming people with disabilities, that responsibility means extra care and consideration -- especially with respect to communication challenges that might very well be discovered after the filming. Neither Paula nor I were offered such consideration.
"Like Paula, I found that the director of the film my children and I participated in did not take my concerns about accurately representing neurodiversity seriously, and he went so far as to use shaming-language in an email after I shared my concerns, he said, ‘You should listen to yourself. You're pinning yourself into a corner by trying to live up to these standards of what neurodiversity is in your mind.’

"That’s right, he attempted to tell me how I should think about neurodiversity -- even correcting my own thoughts about neurodiversity. I'm still in shock at his audacity about that one.

"So this is what I have learned, this is my takeaway: I will only participate in interviews where questions and an outline are presented to me ahead of time. Though not a guarantee against future edits, this option at least has a better chance of ensuring accuracy. I don’t naturally process spoken language in real-time, so any answers I provide to someone in an interview, will, in all likelihood, require editing in order for the truth of my thoughts to be conveyed in the final product. Working with a director who honors that access need and is willing to put it in a signed agreement is imperative to a project’s integrity.

"I learned this lesson the hard way: our words are immortalized when recorded, and anything less than our true experiences should not be preserved. If directors and filmmakers are not willing to provide individual access needs to people with disabilities, and they don't further ensure it in writing before filming, then I recommend reconsidering participation.”

Yet people say “You should have thought of that” and place all the responsibility on you.

The filmmaker or PBS or the marketing people who were hired by the filmmaker to come up with materials should have considered my precarious financial situation and the fact that I am disabled.
Even if some of my worst fears about the film’s potential for damage to my community never materialize, the negative effects on me personally have been profound. Even without one more disturbing thing happening.

People have told me that I am in this for the long haul -- the film is out there. Negative things will be said or implied about Autistic/non-autistic marriages/relationships. Even PBS and the filmmaker did that before I put a stop to it. 


I can envision having to live with the fallout from this for a long time; and even if I don’t personally, other than how it is affecting me now, it might be used against some other Autistic person and I will never know it. That (and the financial concerns, of course) is what keeps me from sleeping well, or at all. 

I want to apologize to anyone and everyone who might be negatively affected by my participation in the film. I have publicly apologized to Autistic people on my blog, and in person at Autreat (which was both a heartfelt and a symbolic, in-person apology to ALL Autistics), for anything negative about autism and marriage that might come out of this film. This apology is not intended to excuse myself for anything that might make it harder for other people but to acknowledge and take full responsibility for my part in it.