I am Tracy Thresher and I am here today to type about
dearly rewarding work as a self-advocate. First I want to
share my thoughts on using Facilitated Communication
(FC) and having a voice. I have been using FC since
1990 and was one ofthe first people in Vermont to be
introduced to it. Not being able to express myself was like.
being in a world ofsilence. I couldn't tell people what I
liked and didn't like. People thought I was retarded, that I
didn't understand what was being said to me. It was
frustrating and made me angry and I withdrew. The
experience ofthe world looks different from my
experience. Most people take their ability to talk for
granted and I take my inability to talk quite seriously. llive
with it everyday -it is always there each time someone
wants to read my thoughts.
The impact oflearning to speak up and have a voice has been quite meaningful for me. I have typed life goals and
dreams that have actually come true. One dream of mine was to go to church and be baptized. I told my mother this and it happened. I have been able to meet with my pastor and discuss God and the Bible because religion is very important to me. I am learning to do the things I want to... teaching others about Autism and FC and movement differences. These are things I've wanted to do and now it's happening! I have spoken about these things I wanted for my life and some have come true. This would never have happened without FC.
I have been appointed by the Governor to the Vermont State Standing Committee on Developmental Disabilities. This is a very important appointment because I am the only autistic person that uses fc to communicate on the committee. I must show how open minds are the ticket to learning how to support proper quality of life initiatives. I think sitting on committees and other structures that plan for and make decisions about the lives ofpeople with disabilities is extremely important with so much at stake we need to voice our opinions front and center so that typing is seen as valuable input.
Yes I want you all to know speaking up and speaking out are as American as apple pie and hot dogs. It is every Americans god given right to speak ones thoughts, views, and lost world ways. The war in Iraq is not proper use of Americas' troops, resources, or political capital. This is also true of autism the current wars on autism are deeply misled and a strong voice is needed from people with autism. Without that voice the fear will guide the way
autism is treated. That is more to do with people's misunderstanding of what autism is and I think people have loads ofprofessional awful information. We are not a diagnosis or a label we are people with feelings likes and dislikes very much like everyone else. The way to think about this is, each person is an individual with there own uniqueness, so don't think autism think out who the person
This is my message to all ofyou -speak your true inner voice -let people know what trusting intelligent and articulate open-minded people we are and that we have something to offer. And the way to get heard is to find trustworthy partners and with them you can fully express yourself So much of my time is spent in silence listening to others stories and lack of speech traps me in with raging thoughts. Learning to speak out first and foremost is done with a desire to change the world and my voice may not sound like others but the desire is 100 and 10 percent there waiting to fire things up.
Why to me is self-advocacy important? That is my life-line to working real thoughts through typing and the outside world. The thoughts are there waiting to come out and hope for better life pushes the words out. The Breaking the Barriers project is one good example of speaking out and being heard. With training and support from Christi Kasha Hendrickson, Denise Marshall, and Jamie does double time talker Rupman we were able to spend time advocating for the right to communicate in Washington DC and people like the state representatives listened to Larry
Bissonnette, Tyler Fihe, Sue Rubin, Harvey Lavoy, Pascal Cheng, Jamie Burke and me.
My advice to you is to get support from a knowledgeable Communication Partner and get out into the world so you can make connections and learn how to speak your voice. Leading the way is our responsibility and our right to have a voice. While typing this I am thinking my life sucks due to so little say I have at times and that people speak for me. But here I am typing real thoughts about things that are very important to us. All I wish is that we didn't have r to deal with so much ignorance; really I do, but so be it and onward soldiers and let's change how people view disability.
Righteous indignation is up to us, so I say speak out let people know what you are thinking for silence is deadly and speech is golden. I am not controlling the way people think seriously folks what I am trying to do is speak to your consciousness and just thinking. So out spoken Tracy is saying think with your hearts and minds to cast out the doubters making our message clear. Want you all to think about what you do when you leave here. Big time call to action folks step up and speak out doing what you think you can't is important. Yes I can't take credit for that it was Eleenor Roosevelt who said, "you must do the things you think you can not."
Why autistic children struggle to speak is something of a mystery. Many autistic children learn to speak late and only with intensive language therapy. Some never learn. This is not true, however, of those with Asperger's syndrome, a milder form of autism. Children with Asperger's tend to be almost hyperfluent—or as one such child put it to me in an interview, "I talk like a dictionary."
Those with classic autism often talk more like a balky tape recorder. They may be limited to echolalia — repeating words from songs, television and the environment — in meaningless ways, or lapse into making growling incoherent sounds. Chandima Rajapatirana, a 32-year-old autistic man from Potomac, Md., writes about how hard it is for him to coordinate the working parts of his body and brain to produce speech. He and others have expressed the anxiety they feel about trying to speak and failing. Jamie Burke, a 19-year-old high school senior from Syracuse, N.Y., puts it this way: "The fears that live in the silly-sounding voice made me feel like people would laugh at me."
Jamie didn�t tell me this in spoken words. I watched him type his answers to my questions using a lightweight keyboard. His mom, Sheree, held the keyboard as Jamie typed one-handed. After he finished each answer, he would read it to me aloud. He speaks clearly with good intonation and has worked hard to achieve this, but he still finds it difficult to speak without typing first.
I met Jamie Burke and Chandima Rajapatirana earlier this year at a Syracuse University training session for people interested in learning facilitated communication. FC is a highly controversial technique for helping people with limited or no speech learn to communicate, generally using a keyboard and the help of a human facilitator for both physical and emotional support. It originated in Australia in the late 1970s and was first used for children with cerebral palsy, among other disorders. Both Burke and Rajapatirana had their moms serving as facilitators in our interviews. When Jamie types one-handed, Sheree Burke holds the keyboard. When he types with two hands on a table, she stands behind him touching the back of his shoulders. Rajapatirana also has his mom lightly touching his shoulders or waist as he types. But many others who rely on FC require a lot more hand-holding. Some are physically supported by their facilitator at the forearm or shoulder; some are held at the wrist.
What's so controversial about FC? A preponderance of studies have found that the ideas being expressed are not those of the person with autism but rather those of the facilitator. In several studies, only a small percentage of FC users were conclusively shown to be expressing independent thoughts. In some studies where the facilitator and FC user were separated, given different sets of information and then asked questions about it, it was facilitator's information that was more often expressed in typing, though the facilitators are often unaware that they are leading, says James Mulick, professor of pediatrics and psychology at Ohio State University and co-author of research debunking FC.
What then to make of what I saw at Syracuse, which has an FC institute? "You are simply being deceived," says Mulick. "But don�t feel bad. Even some behavioral scientists have been deceived."
Proponents of FC concede that when FC is done improperly, the facilitator can take over. They also say that people who are severely autistic respond poorly to the lab setting. And they point to examples like Burke and Rajapatirana, who are not held by the hand or wrist — though both did require that degree of support when they began using the technique.
To get more insight into the controversy, I asked one of the FC users at the conference, Tracy Thresher of Vermont, if I might take a stab at facilitating. Thresher agreed, and an experienced facilitator named Harvey Lavoy coached me. I held Thresher�s wrist as he typed answers to my questions. I found that I had to constantly pull his hand back away from the keyboard with a steady pressure. At no point did I feel that I was leading him toward the keys, nor did I know the answers to the questions I was asking him. He answered some clearly, and others less coherently.
I can imagine that facilitators with a close, loving relationship to the person using FC might inadvertently lead them by the hand and, in this sense, put words in their mouths. But at Syracuse, I became convinced that at least some FC is for real, and for someone with no other form of communication, it can be life-altering.
Rajapatirana's mother, Anoja, told me that her son suffers from seizures, as do many autistic people. For years, she would crush up his medication and put it in his food, because he couldn't swallow the pills. "One day, he had a headache, and he just swallowed a Tylenol," she recalls. Anoja, amazed, asked him why he had gulped down the Tylenol but had never been able to swallow the seizure medication. He answered, typing, she says, that "he thought that if he didn�t take the pills, maybe he would die." The Rajapatiranas shared this thought from Chandima (though to be honest, I didn�t witness him typing it): "FC doesn�t cure you, but it gives you a reason to live."
Who thinks what about being autistic
In response to the NPR show, I’ve seen people (who must not have actually listened to the show), saying that it’s only auties who speak, or who are regarded as “high functioning,” who are happy with being autistic or oppose the idea of curing autism. As far as I’ve been able to tell, this isn’t the case.
There’s a lot of different opinions on curing autism, not just two, of course. And I don’t believe in the way the rest of the world divides us up into functioning levels, that is too simplistic and assumes there’s only one dimension to being autistic, it doesn’t even bear up under scrutiny. But if I were to take autistic people and how the world generally divides us, and take our opinion of being autistic, I really don’t think I’d see much correlation to the world’s false subtypes.
I’m going to post the following quotes, but with a bit of a disclaimer attached. I’ve found that aug-comm-using auties are often tokenized even within the autistic community. When we agree on a basic principle such as the way we think about being autistic, that can be used to say “See, we have those people too.” But an aug comm user would have to be pretty oblivious to hang around the autistic community for very long and believe that we are considered to be on equal footing with other autistic people. That’s one of many divisions that unfortunately still divides this community, in subtle and not-so-subtle ways. So if you see a post like this linked to as evidence that this is a wonderfully and totally inclusive community for all autistic people of all kinds, think again, we’re not, on many levels. But also think again if you hear that the “non-inclusiveness” is just that we don’t like the idea of cure and don’t understand “real autism” which is defined as autistic people who want a cure.
I’ll start the quotes with a quote from Cal Montgomery that sums up the point of this entire post in a way:
I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.
Some political opinions about autism:
I value my AUTISM above all else with which my life has been “gifted.” While I also have cerebral palsy and epilepsy and these are wonderfully special to me, and I often think being “unable to speak” is a blessing in disguise; none of these remotely match the total delight of being AUTISTIC.
I can see and hear people reacting to this by wondering “Is she serious or is she pulling our legs?” Well, wonder no more! I mean everything I have said and am about to say.
What do I see as the gifts that autism has given me? My incredible intelligence, unique insights, talent for improvisation, creativity in writing and music, wonderful memory, and awesome ability to teach and help others understand… I believe all of these are valuable “side-effects” of my AUTISM that far outweigh all of the “negatives”. I am who I am at least partly because of what I am, and that includes AUTISM and how it has gifted my life.
That was written by Sharisa Kochmeister, a woman with autism, epilepsy, and cerebral palsy. She was, until learning to type (which she now does independently), presumed to have an IQ of 10. The full text of what she said in the above presentation can be found at the Watch Our Words website.
Therefore, Autism is a friend, a comfort, a companion - albeit a rather annoying one at times, but so are all companions. It is also a protector, a buffer… And it’s who I am. Jim makes the statement that if it were possible to separate the autism from the person, and it were done, then what you would have left is not the same person you started with. In my case, it wouldn’t even be a person; it would barely be an entity, or alive without autism. i would virtually not survive. (maybe a shell… surviving; a physical body, but that would be all. There would be no being.)
Kim, a Canadian autistic woman, wrote that. She learned a non-communicative form of speech as a child under pressure and only began to use speech to communicate as an adult after using a communication device for awhile. Last I heard, she still alternated between speech and typing. The full text of what she wrote can be found at What Is Autism?
World needs retards. Yes! Retards, retards, retards! You can say it, too. Retards. Go ahead and say it. Go ahead and shout the word. Retard is who I am.
Elana Connor was, at the time of writing a short piece reclaiming and taking pride in what’s normally a nasty epithet, a girl in California who had recently begun typing. The full text of what she wrote can be found at Why Retards Are Sad In This World. That is apparently one of the first things she ever wrote.
I dreamed of being normal, the best that I could be –
But it’s awful being normal; why can’t you all see?
I’m tired of being normal — autistic’s what I am.
Why can’t we all be normal, being just as I am?
All people are real, in the deepest sense of that word. That means that there is no such thing as a non-human human. But if you look around this room, you will see people who look at least non-standard. And that is where the problem begins. We live in a country where image is kind of a reality more real than reality. My main answer to that is: I don’t need surgery to make me real any more than a beautiful woman “really” needs her eyelids sewn back. The fact that I think I do and she thinks she does is more fairy tale than real. Eagerness to be like others didn’t make Pinocchio real — it turned him into a donkey! And eagerness by parents to cure autism or retardation or compulsiveness will not drive great distances toward the final solution to the actual problem. Because the person who believes “I will be real when I am normal,” will always be almost a person, but will never make it all the way.
When Doug Biklen was recruiting authors for his anthology, Autism and the Myth of the Person Alone, he said of Lucy Blackman:
Blackman [...] is hardly any more accommodating to what she perceives as my interest in how-to strategies. “’How to’ for what?” she asks. When I requested that she write about her experiences with autism so that others might benefit from her analysis, she told me she found it annoying to be approached about such matters and not about her ideas on non-autism-related topics. She felt my agenda assumed she might be “wanting to be normal.” She does not. Blackman reminds me that my agenda might not be her agenda, and that if someone feels it valuable for her to be heard, she would rather discuss her “pure intellectual thought.” She is not about to unveil a series of “remedies” or “practices.”
He did convince Blackman to write for his book, and this is part of what she said in it:
If I were to say anything about autism, it would be how fascinating it is. The idea that autism is fascinating is more that it is what I hope for the future, that my kind of thought processes are seen as possibilities for the next genetic shift in Homo Sapiens, not that it is a progression but that further down the track the slight changes in individuals scattered among the population is a slight difference in problem solving. Unbelievably those of us who have greater difficulties may be nature’s experiments, and you can’t expect evolution to get it right every time.
Recently, Estee wrote a blog post called My Visits with Larry Bissonnette and Jonathan Lerman. Both are artists who are also autistic. Here is her account of part of her conversation with Larry Bissonnette (another co-author of Autism and the Myth of the Person Alone), who communicates by typing:
Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”
“People who think your disability is a sickness need to be cured of their ignorant attitudes.”
I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.
I started with a quote by Cal Montgomery (who speaks using a keyboard and is heavily involved in the cross-disability movement), so I’ll end with one from the same article, Defining Autistic Lives, which was a review of Autism Is a World.
But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify “defects” in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people’s failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing — or at least controlling — us. And having made that conclusion, they continue to accept or support ways of living that shut us out.
Again, these are obviously not the only opinions of people who use augmentative communication, but it would be silly (one would think) to assume that all people who fall into any particular category have the same opinions about everything. (I’m not saying that everyone’s equally right, just that everyone has varied opinions.) And these are not saying there are no rifts in the autistic community and that we’re one big happy utopian family, because we’re not.
But it is evidence that our opinions about being autistic (or as some put it “having autism”), and our deemed “functioning level” (which is often, for some reason, very speech-dependent), are not particularly correlated. People who do not believe in cure and/or find some value in being autistic are represented in the whole autistic “spectrum” as far as anyone knows (this includes people who had no means of communicating about it for a long time), and so are people who do believe in cure or do not find value in being autistic. So it’s about time people quit making ridiculous comments about “If you were one of those people who couldn’t talk, you would not believe what you believe.” Our differing beliefs come from our differing worldviews, not our “functioning level” in the eyes of non-autistic people.