An Open Letter to Robert MacNeil Regarding PBS’ Autism Now Series
Dear Mr. MacNeil,
It has come to my attention that you are spreading dehumanizing stereotypes about us. In an interview to promote your upcoming series, Autism Now (formerly Autism Today), you said the following about autism:
“It delays the most — delays or impairs for life — the most human thing we have, which is our ability to look into each others eyes and feel that other person’s existence and what might be going on in their mind, and to empathize with them. That is denied — largely denied — to children with autism.”
I remember you from the MacNeil-Lehrer News Hour. You always seemed to be an intelligent, nuanced, thoughtful human being. But then again, because I’m autistic, I must have been incapable of understanding what was going on in your mind all those years. Largely because of your statement regarding my supposed impairments in this area, I am beginning to doubt my previous judgment about you.
Your thinking about autism is anything but intelligent, nuanced, or thoughtful. It is based on the most pernicious misinformation and stereotypes our culture has to offer about the lives, hearts, and experiences of autistic people. I have been autistic for every moment of my 52 years on this earth and, believe me, I feel the existence of other people so acutely that I have to spend a good portion of my time alone. I walk into a room, and I feel the emotions of everyone there. My empathy is off the charts. And I am very well-skilled at figuring out all the possibilities for what might be going on in the mind of another person.
If I were less than fully capable of feeling another person’s existence, understanding what might be happening in another person’s mind, or empathizing with another human soul, I would not have a wonderful marriage to a loving, gentle, intelligent neurotypical man. Nor would I have a beautiful 18-year-old neurotypical daughter who tells me that I am the best mom she could ever ask for. How many teenagers say that about their parents? You don’t get there by failing to empathize with your child.
But don’t just take it from me. Ask any autistic person, on any portion of the spectrum, about the intensity with which he or she experiences other human beings, and you will hear much the same story.
What’s that? You didn’t interview any autistic people for your series?
What?
Okay, let me get this straight: You are doing a series on a disability without ever having talked to anyone who actually has that disability.
I’m sorry, but has something changed in the journalistic profession? If you did a series on understanding people who use wheelchairs, would you talk only to their parents? To their doctors? To researchers? Or would you actually talk to the people using the wheelchairs so as to, you know, do a halfway decent job of helping your viewers understand their lives and experiences?
I don’t know. Maybe you wouldn’t. Maybe you think that disabled people have nothing to say. You clearly feel that way about autistic people.
But why? Well, I suppose that if you’ve already decided that we suffer an impairment in “the most human thing we have” (and “we” appears to refer only to non-autistic people since, clearly, actual autistic people wouldn’t actually be reading anything you have to say, much less understanding it or having feelings about it), the whole idea of talking to us kind of goes out the window, doesn’t it? I mean, who wants to talk to someone whose humanity is sub-par?
Are you even aware that many of us can speak? Yes, we can. We speak using our vocal chords, our computers, our body language, our affection, and our basic humanity.
But clearly, it’s never occurred to you to listen.
If you don’t want to hear us, if you want to continue living in utter ignorance of our thoughts and our lives, that is your right, but please, consider the following: What kind of a world are you creating for your autistic grandson? Do you want him to live in a world in which no one listens to him? In which people consider his humanity to be less than theirs? In which people believe that he has no feelings, no empathy, no understanding of other people? In which people don’t even bother to find a way to communicate with him, because it just doesn’t seem worth it?
What impact will the attitudes betrayed by your words have upon his happiness? Upon his ability to receive appropriate medical care? Upon his ability to make friends, to feel safe, and to develop self-respect? Will his civil and human rights be protected? Will he be treated with kindness?
Think about the world that you are helping to create and perpetuate. And believe me when I say that I know that world well, because I’ve lived in it for over half a century.
From where I sit, anyone who can’t treat another human being — any human being — as though that person has something to say and a right to be heard is not living up to his or her humanity.
Look at us. Listen to us. Feel our existence. Think about what might be going on in our hearts and minds. And for God’s sake, empathize with us.
You’ll be building a better world for everyone.
Sincerely yours,
Rachel Cohen-Rottenberg
Rachel Cohen-Rottenberg blogs at Journeys with Autism.
An Open Letter to Robert MacNeil Regarding PBS’ Autism Now Series appears here in accordance with the terms of this Creative Commons license.
See also Rachel’s We Are Not the Enemy currently guest-posted at Yeah. Good Times.
Rachel’s memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.
[image via National Governors Association]
Rachel Cohen-Rottenberg on 04/18/11 in featured, Society | 7 Comments | Read More
Comments (7)
I watched a little of it. I may not watch it again.
I already have an answer to crap like this: http://womanwithaspergers.com/aspie-poems/poem-you-dont-see-it/
There are plenty of us that prove this kind of drivel wrong.
-Nicole
Very well said, Rachel. Such a disappointment to see a respected journalist sink as low as this.
@Meg: Thanks for your comment. I took a look at your blog post about the infighting in the autism community, and I was so glad to see someone else who is tired of all the shouting.
@Nicole: I just love that poem. So, so much.
@Gwen: I know. I look at the comments on the site of the interview, and only a few of us are saying, “Hi, maybe you need to show some empathy and talk to us?” Most are going on and on and one about causes, cures, and how grateful they are that he’s telling “the real story.” Very distressing.
I get the feeling PBS sort of let MacNeil loose on this one - left him alone to have this series as his baby, out of a) respect for him many years of service with them, and b) out of compassion/consideration and yes, probably a whole lot of pity, for his autistic grandchild. It just seems to be out of sync with other special needs documentaries PBS has favoured in the past.
Aside from the one episode that mainly interviewed scientists and did a pretty good job of outlining the latest theories and research, the series has been profoundly one-sided, outdated in its lack of a neurodiverse perspective, and struck me as a pity party for the poor people who have deal with these hopeless, helpless autistics. The language has made me cringe at every turn. So disappointing and, really, rather enfuriating. I mean, if we can’t even get PBS to “get it”, then we are way farther behind than I thought we were.
@Caitlin: I know. I can’t believe it’s happening on PBS. It feels like such a blow. I hope that, at some point, PBS will air a series on autism that brings in the wide spectrum and talks about the necessity of respecting the lives and voices of autistics. We’ve got to keep speaking up about these issues.
Followup here: PBS to Autistic People: If You Can Speak, We’re Not Listening