Speaking Up for People Who Can’t Speak
Guest Post by Stephanie Sherbel Jasuta
Okay, Okay. I guess I have no choice. I must speak up. I must tell about what happened, what changed my life and led me on my spiritual journey. I had a chance to speak up twenty years ago and I didn’t do it. Not enough. But, times are different now.
My body is letting me know in multiple ways that I must speak up. First, I developed acid reflux (I stuffed this experience in my gut). A few years later my throat went out and I had vocal cord dysfunction and could barely speak (not so good for a speech pathologist especially) and then my pharyngeal wall collapsed onto my tongue resulting in sleep apnea and I had to have surgery (all from not speaking my truth, I think). I spoke it, but not loudly enough. Not in enough ways. Not effectively. Recently I developed two new physical symptoms: ankle problems with my tendons separating in both feet (I take it as my lack of forward movement in speaking up manifesting a new physical challenge) and high blood sugar. I have to take medicine that tastes like swallowing perfume and I’ve had to give up eating sugar and bread. Now I am having difficulty experiencing the sweet things in life!
For twenty years I have known something that few others know. I know that people who can’t speak can often learn to type. About 20 years ago, I was a speech/language pathologist in private practice in a great city with a husband and a kid and then, bam, I learned about something that changed my life. It is called Facilitated Communication (FC). I saw for myself that adults and older children with Autism who had never talked, could talk by typing with a little support from a companion. It was the little support part that turned out to be the problem.
FC got studied. Forty plus studies indicated that the support people with autism needed to be successful communicators did not stand up to scientific scrutiny. The FC users (people with autism and other disabilities with no speech and very little conventional communication as a part of their condition) couldn’t prove their typing competence the way they were asked to do it in the studies. Study after study asking people with profound disorders to prove themselves by looking at different pictures than their helper saw, and still type what they saw, seemed to show that they were not doing the typing. All those similar studies showed the subjects were not successful with the experimental tasks. It made it look like FC was a fraud and that the person with autism was not typing. The studies made it look like the subjects were just being manipulated to type by those supporting them. FC was banned from use by my profession and I had to tell it goodbye and return the 20+ people who were communicating for the first time because I was supporting them, to being prisoners of their silence once again. No wonder I then developed acid reflux. It was a bitter pill to swallow. I was haunted by their faces begging me silently for help. I could not bear to work with them knowing they could type and not be able to help them type and then see them the way they were when we met, mute, pointing in a wallet or copy typing. I gave up FC, moved on and never saw those patients again.
The problem for me was I knew to the core of my soul that FC was real. It worked. It enabled people who had never been able to do so before to communicate and reveal who they were inside. I have no doubt to this day that I did not manipulate their hands to type messages to me. I had no knowledge of what they told me and what they typed turned out to be true over and over again. For example, one young man typed to me using the name of his cousin, an unusual name I had never heard of before as part of a message. I didn’t type it. His mother noticed the name later and was able to believe her son’s typing with this verifying info in his typed output. This woman changed the way she treated her son thereafter because she now had a glimpse of who he was and what he was thinking. Some people I worked with made apologies to others present, typed with my support, which resulted in tearful conversations and forgiveness including details that I knew nothing about. (ie. Please tell my cousin that I didn’t mean to do it. I had never seen the inside of a girl’s purse before and I just wanted to see what was inside. I didn’t mean to spill it all over the room). These details of a family incident (the cousin had screamed when she saw her belongings all over the room) were known only by the people in his family, interacting for the first time in his 20 year life because I was enabling this person with autism to type to his family and apologize for what had happened. I did not know anything about the incident that happened in this family’s past.
I could go on and on with examples. I had what I call divine tears every day-tears of joy. Divine tears are those tears you get when you unexpectedly tear up at something good that happens, either in real life or in a movie or a book or from a memory. You know. Everyone gets these tears. Happy tears. Tears from feeling moved emotionally. I interpret these tears as a window to what I feel in my gut to be real and good. The right thing to do, the motivation and proof that I am going in the right direction. Going toward what I think is the goal I was born to nurture is so important to me. The journey to be the best I can be. FC felt so right, so in sync with what I was supposed to be doing. It felt like the right thing to be doing. So good in its effect. Such good outcomes. It was a blessed time in my life. The memories make me smile and tear up at the same time to this day.
And now for 20 years this beautiful technique has languished. All the apologies which were never made. All the truth not told. All the communications that didn’t get to happen. All the people presumed retarded who could have been typing. It stabs me in my heart to think about it.
So, I have to tell the story. My story. The Story of My Spiritual Journey. The outcome for me of the 20 years of silence I and they have born. I must speak up. For me and for them and for you and for all to come.
Chapter One-Who I Was Before FC.
I was always an optimistic person. One of those glass is half full people. I was always a seeker. I wanted to be the best I could be. Every night in my prayers, I would ask G-d to help me be the best I could be.
“Dear G-d” Thank you for taking care of me today. And, please take care of me tomorrow. Please bless everybody. Please bless mommy and daddy and brother and my aunts, uncles and cousins. And, please, G-d, please help me be the best I can be. I love you very much. Thank you G-d. Amen.”
I said this prayer every night in my head for well, I guess 20 years.
I was born into an intact family with a Mom and Dad who loved me and gave me good feelings about them and myself. Overall, things came easily to me. I learned easily. Friends, leadership in organizations, a few awards. I got accepted to the college I thought I wanted to attend, and then transferred to my state university a year later. I found speech therapy, my profession, my passion, my career. A blessed life.
Then, I met my husband to be and we dated and got married. We had 13 totally wonderful years together when we did not yet have children. I finished my Bachelor of Science Degree, my Master’s Degree, worked two years as a speech/language pathologist and reentered the university to earn my PhD. My husband finished his Bachelors in Education, went to Law School and got his first jobs in the State systems for Attorneys.
It took me a long time to finish my Dissertation. I wanted to really know something when I finished it, so I did a longitudinal study. I studied four babies just learning to talk. I wanted to know what it looked and sounded like when all the infant’s experiences came together just right and the baby transformed into a toddler who communicated with sound combinations. I studied how it happened for these four babies, two girls and two boys.
I learned that these babies gradually constructed their systems, making noises, shaping these to be words, changing old words and using old forms for new meanings. One baby had 12 words that sounded like “buh” but we all knew which he meant by the context he was in and his body language. The process was individual. No two were alike. They were flexible with their pronunciations. They could start off with a few sounds and gradually make it more complex and more like the words the adults were saying. The adults played a big role. The Moms and Dads all played their roles well. And the environments were rich and nourishing.
As I finished up my Dissertation, I started my private practice in Speech/Language Pathology. I saw many 2-3 year olds who were not talking or even babbling. I took what those 4 toddlers taught me (as well as all I learned in school) and applied it to what these kids needed to do next. I taught it to the parents or care givers. We kept logs of their words and set goals. Gradually, the kids having difficulty talking learned the next step and the next step and then they were talking. It was a great job to have. I still remember those kids as if they were 2, 3 or 4 years old and now they are adults.
I worked with a life coach and set my goal for my professional life. It was “To reduce fear and anxiety about communication disorders and replace them with optimism and successful learning experiences.” I kept this focus as I worked with the variety of people who came my way.
Then our autism center got started locally. I was hired to be the speech pathologist 3 hours a week. It was a blast! I learned all about Autism. I read everything I could. I took trainings by leaders in the field. I went to the conferences. Eventually, my colleagues and I presented at the conferences. We noticed that the behavioral oddities of autism decreased when the people with autism learned some conventional way of communicating the meaning needed-a sound, sign, gesture, a point. We worked with our school aged children to replace their aberrant behaviors with communication and social interaction. These were wonderful days of discovering that those children who had what was then a rare disorder could be helped so much by what I knew how to teach. We had our kids with autism typing on type writers. They loved what they called “machine” and we had them copy typing what they saw written out-usually a summary of what they had just done. Looking back, we were on the right track. We were all trying so hard to relieve the frustration and build communication and social interaction for our kids and their families. We even had an in-home training grant and I got to go into the homes and partner with the parents to build their strategies with their child about providing for increasing desired behaviors and watching undesirable ones decrease.
I took a job consulting in a nearby city with a residential treatment facility once a week. We were working with our communication-social interaction-replacing aberrant behaviors with communication approach. It was going as well as expected. These adults and older teens with autism who did not talk learned to carry wallets, boards or talking devices and take them out and point to what they wanted if it was something that was pictured or written in their wallet, getting someone’s attention first. The more advanced students could greet someone by pointing to a “hello” symbol and then interact by pointing in their wallet or on a board or they might ask for “help” or a “break” to head off a meltdown. One student got a device that talked for him when he typed. He liked calendars and liked to type in the names of days, months, or holidays and hear it said by the machine. He had some success learning to type in “help” and communicate basic needs. It was a great status symbol for him among the other residents of the school. It made him happier.
We were encouraged with our successes involving use of literacy. We found that we could hold up a sign and some of our students would stop their autism behaviors, focus on the sign and follow the directions. Some of them could follow a 3 step instruction and would do it by reading much more readily than by listening to instructions. (Joshua, get that blue paper, throw it away in the trash can in the corner and then sit down by Ruth). We and many in the field of Autism had noticed reading and typing skills in our students and were trying to use these skills creatively to help them communicate. But, everything we came up with was very limited. We had to think of what our student might want to say or analyze what they might have wanted to say after a failed attempt and show them a way to say it conventionally (a word, sound, sign, gesture). Once the student understood what it meant and practiced the new skill, therapy turned to helping them learn to initiate and respond these ways. It was slow going, but the approach showed promise.
Then, word came out of Australia that a speech pathologist there had been teaching people with no conventional communication to spell or type, even people who had appeared to have profound mental retardation. She had achieved a remarkable amount of success and it was making news in our profession! Then, a professor from Syracuse, NY went to Australia and brought the technique back with him to the US. It involved giving the disabled person support: physical support to the hand, finger or arm; emotional support (confidence in the likely success of their typing experience); and communication opportunities. If these people could have typed all along, they would have done so long before FC. It was the opportunity to communicate (they were asked a question or given a choice), the respectful attitude toward their presumed competence (they had been presumed to be profoundly retarded all their lives, so this was quite different than what they had ever experienced before) and the help to the hand.
The hand. Yes, what about the help to the hand. Well, the idea was that the person communicating, the person with Autism (it was also used with some other profound disorders) pushed down to type and the helper pulled their hand back up and to center in front of the typewriter to type the next letter. Once I was trained to do FC and felt my patients communicating with my support, I went to conferences and books to figure out why helping them that way could be resulting in such success resulting in our realization of unexpected abilities in our students. How could they be typing in sentences when they never did what the babies in my Dissertation did? How could they have missed out on all these presumed necessary precursors to language and literacy, and still be communicating with FC? I found the work of Jean Ayers and her book Sensory Integration and the Child (1970). In it I found defined different kinds of limb and other apraxias or dyspraxias. Was it possible that my patients had these apraxias or some other movement disorder that explained the role of the rhythm we used to successfully support their communication? I thought so. I went to trainings with Occupational and Physical Therapists about movement difficulties and movement disorders. I asked my FC users and they told me they got stuck and their bodies did not do what they wanted to do, but produced other movements instead or that their bodies stayed passive when they tried to evoke series of movements like speech and typing. The best quote I ever saw about this was from a young woman who typed “Having Autism is like being a clown in a world that is not a circus.”
Syracuse University started offering trainings and I had the extreme pleasure to attend four May conferences, four years in a row. At the first conference, we were all wide eyed about our experience in common and trying to figure out why it was working. The conference participants who had autism were in the audience at the presentations with us. They made noises and had distracting behaviors right there while the presenters were presenting. I remember having to struggle with myself about their right to be there and why it was so unexpected and unusual to me. The next year, the presenters were taking the technique to new levels and were making sibling, parent, teacher and community employment plans to help those using FC to communicate be included in new settings and in new ways. When there were questions to the presenters they were unsure of, the speakers began to defer to the FC users to answer. “Let’s ask Melanie in the audience how she would answer that question” and Melanie would answer, spelling on a letter board or a typing device and the helper would read what was typed. My divine tears were flowing as each gave profound answers providing us all insight into how it was for him or her, teaching and inspiring their teachers and family members as public speakers.
This was when I made a paradigm shift. My thinking changed. Whereas I was sure many people with Autism who did not speak were severely mentally challenged, now I was hopeful that each I met had hidden abilities and would be enabled to reveal his identity. Many FC users’ first typed communications were “I am not retarded.” Can you imagine not having control of your body, but being you, just locked inside your body? Can you imagine finally having someone help you type? I was having awe inspiring experiences. I was so happy in my work!
The third year’s conference featured FC users as presenters. Using FC boards or typing/talking devices, they gave presentations to the professionals and parents assembled about their hopes, aspirations, do’s and don’ts for the helpers and a look at how it felt to them. They showed us the progression of their work on improving their typing. They wanted to be independent, not needing physical support. Some were communicating successfully with only a touch to their shoulder. One young woman typed with her father’s hand “shadowing” above her hand, with no touch. It was an incredible experience to participate in this changing perception of profoundly disabled people who do not speak. It was the professional experience of my lifetime that ignited a passion that made my life and my professional career the beautiful experience it has been.
By the fourth year, the negative research had come out and the presentations were again by the FC users. This time they were trying to learn the tasks the researchers had used. Their speeches were done as independently as possible, they were sincere, scientific and their counter research rang true. I admired them each greatly and still do. Several of these then young adults learned to type independently, some attended and graduated from college and all benefitted from the time they spent having others talk directly to them, looking expectantly to them for answers, supporting them kindly, giving them the benefit of the doubt and respecting their abilities and limitations while honoring their successes.
Once I gave up FC and returned to more of a traditional speech therapy private practice, my techniques were never the same as before FC. I always greeted and spoke directly to the disabled person first when entering a room full of people, arriving to work with someone who did not speak. I never spoke about a person in front of them as if they were not there, whether they could respond or not. I always looked for hidden or unexpected abilities and often found them. I included literacy skills in all that I did, knowing that there could be literacy skills present in each person I worked with. I always gave everyone respectful chances to communicate and interpreted their behaviors as responses. If someone’s parent wanted them to use FC, they might use it at home, but it would not be allowed at school. School districts allowed me to consult on ways to give these students opportunities to communicate without typing. But, none of the remaining techniques were as successful at allowing the more complete communication from FC typing. Someone had to first include the word wanted on the board or device or later on the computer program as computers came out. If the word or expression wasn’t there, the frustration was still there along with tantrums, self abuse and aggression, the hallmark aberrant behaviors of someone with autism who is frustrated by not being able to communicate, interact and show who they are.
After FC, I was injured. I was bitter. I was haunted. I tried to fight the smug scientists and their results. But it was intimidating. My fear overrode my love. I was a speech/language pathologist, not an orator or debater. I knew the technique was successful, but I also realized that it was vulnerable to misuse, even unintended misuse. If a helper thought an FC user might type a certain word, could the helper give unwanted influence resulting in their word being typed instead of what the FC user wanted without intending to do so? Yes, it could and probably did. I knew FC worked but even I saw its vulnerability. Rather than continue to work for its use, I gave it up and went on being a Speech/Language Pathologist, a wife, a mother (by then I had two children), a soccer mom, a Bar/Bat Mitzvah trainer, a ballet/gymnastics/color guard enthusiast, a band supporter, and myself as a person seeking to be the best I could be every day.
I wondered what the lesson to learn was to be. I agonized over what a person such as myself should do with this knowledge and experience. Why did I know that FC worked and people who looked like they were profoundly retarded were not and so few other people did? Why did we involved with FC experience the glimpse of a better world and then have it taken away? What did it all mean? Why?
So, I sought help in understanding what had happened.
I sought help from my religion, Judaism. In going to Torah studies, I noticed that in the story of Moses and the Israelites who wandered in the desert for 40 years, that Moses led the people all those years and then he died before getting to see the promised land himself. I found some comfort in this story. I empathized with Moses. I felt support, knowing this happened to such a holy man before it happened to me (I got a glimpse of a promising land and then had to give it up-it seemed somewhat similar). Taking the story as a blueprint for what might be likely to happen to future generations of Moses’ descendants, I felt an identity with Moses. Was I going through a glimpse that would be followed some day by the promised land for nonspeaking people and those who seek to help them communicate? Was the glimpse how G-d was telling us new promised lands would be introduced?
In addition, I sought help from psychics about my life purpose. I met many interesting people, had uplifting experiences and learned about myself through these experiences. I went to hypnosis to delve into myself to see what answers I might find in my unconscious knowing unlocked by hypnosis. I had an interesting image early on where I asked about FC and autism and got the vision of a long snake-like thick cylinder stretching as far as I could see each way. I asked “What about me?” I then saw the cylinder start to unravel in front of me. It looked like neural tissue and I realized it was a living piece of human looking tissue. The part in front of me unraveled a bit, exposing some deeper levels and then fixed itself. I cried divine tears and found great comfort and wisdom from this hypnotic image that came from somewhere inside me. It felt like I was important in the growth of this strand of human knowledge and, without me, it might unravel. I was part of it and an integral part. I was part of what was holding it together and of its future and very existence.
I realize looking back on the years since losing FC that it had the effect of opening me up. It caused me to be open to whole parts of human experience than I would not have been open to previously. Not only was my speech therapy changed forever, but I was changed inside also. I was more open, more apt to believe in what might help me and that led me to many interesting and uplifting spiritual experiences.
Another source of profound help came to me in 2004. Through a series of unlikely coincidences, I ended up on a trip to New York where most of those aunts, uncles and cousins I prayed for all those years lived. My youngest cousin tapped me on the shoulder and said “Come over and talk to me-I trust you to understand a new experience I am having and I want to tell you about it”. I went off to the side with her and she told me she had a Guru, a woman from India. She asked me if I would meet her in a nearby city to mine in a few months to be with her with her Guru. I said I would like to meet her there. When I returned home, I felt skeptical. I looked the Guru up on the web. Her web site said she traveled the world, giving each person who came to see her a blessing through hugging them, if they wanted it. The program was free, no money was charged. In addition, there were descriptions of philanthropic projects run by the Guru: orphanages, soup kitchens, and about 25 other facilities that housed, fed and cared for the poor and sick. I was favorably impressed. I decided to go.
When I arrived at the hotel, I reunited with my cousin. Since I grew up so far away from all my cousins, it is always an occasion of great joy to see them. I was feeling love for her and optimism about meeting the Guru. We walked into the room where the Guru was sitting in front of the approximately 800 people who had come for the program. I looked at the Guru across the heads of the 800 people sitting in chairs and on the floor. Everyone was meditating together. I was enveloped by a feeling of peace and love. It was an uplifting and optimistic feeling that made me smile and feel joy. I sat down and watched. I joined in the guided meditation and felt better and better. More and more optimism and joyful feelings were awakened inside me. My love started to overcome my fear.
When the meditation ended, the Guru began to receive people to bless them. My cousin mentioned that the Guru answered a few questions each day and I could stand on the question line if I had a question to ask. Boy, did I have a burning question! I stood on the line and got an index card with #12 written at the top. That day the Guru decided to answer 12 questions. I wrote my question on the index card I was given. It was “What can happen for people who cannot talk (people with autism and other neurological disorders) who could be typing, but are not able to communicate at all?” When it was my turn, I gave the card to the Swami and he translated it aloud. The Guru looked hard at me. Her look contained so much energy that it knocked me backwards. The Guru talked to me in her language. The Swami said “The Guru says She will help you.” I was overjoyed and cried divine tears. I hadn’t produced divine tears in a long time. They had been locked up inside me for years and I was surprised to feel them again.
When I got home, I felt skeptical. What does it mean that I will receive help? But I stayed open and hopeful. I wrote a heartfelt letter explaining my perspective on the FC story. I begged for help. Reading it now, in 2012, eight years later, it strikes me that I was desperate for help. I felt I had dropped the ball. I knew they could be typing but I felt helpless to make it happen for them and for me. I had been searching for someone to help people who don’t talk but could be typing. Here was an offer of help.
Within two months of meeting the Guru, two international leaders in the field of helping people with autism, especially those who do not speak, selected my city for their international homes. Both have been here all these years, though one closed recently. For close to 10 years, both centers helped people with autism be healthier and to learn to communicate independently. It has been wonderful to have these two centers in my city. They have been helping people all over the world who came here to have their symptoms improved by better understanding their bodies or by learning to write, spell and make choices independently. I admire them both greatly. Pioneers play a tough role in the world. These leaders in the field play their roles well!
The last guided meditation I participated in gave me another interesting vision. I saw myself as a young woman from India leading a group of children. I had had this vision in hypnosis previously. But this time it changed into a series of visions. I was another person leading children and another person leading children. Then, I was suddenly the Pied Piper, a legendary figure who, after being cheated, led children through a mountain away from their parents and were never seen again. The children had been promised a better place to live. I did not want to think of myself as the Pied Piper. Not a flattering self concept to have. The feeling of mourning the missed opportunity to speak up for the children and adults who could be typing intensified and enveloped me in disappointment.
That brings us up to date. I’ve been back to see the Guru many times now, doing Seva (volunteer work). She has countless philanthropic agencies relieving suffering all over the world now. It is a great pleasure in my life to contribute my energy to helping with these programs! Without FC, would I have been a receptive recipient of my cousin’s confidence? Would I have met my Guru? Would I have been on the spiritual path-I think so, but not at the same pace. Would I have been as effective in my speech therapy sessions? I was driven again to find the way to speak up for people who don’t talk. I finally found it today by writing this. My feet feel way better already. I’m moving on. I’ve been stuck a long time trying to figure out what to do. I always knew the answer was to write it all down-type it up. The time was finally right today!
It’s been a few weeks since I wrote the above account of my experiences with FC and how it affected me. I’ve been reflecting on FC’s role in my life, in the life of people who don’t speak, and in our life as humanity.
For Me: FC caused me to have the best and worst times of my professional life. It stretched me for the positive and for the negative. I am a larger person because of my experiences during those FC years. My career was a larger version of itself. I was able to make a paradigm shift in my thinking about judging people at face value. People are often not the way they appear at first meeting. Boy is that true for people who don’t speak. They are not refusing to speak and they are not necessarily profoundly retarded just because they look like they might be. I applied this knowledge to all the rest of my acquaintances throughout all the rest of my life.
Somehow, I was able to participate in the writing of standards for use of FC with the leaders in the field from Syracuse and across the world and to witness the growth of the FC users who I knew personally and those I saw in Syracuse during those conferences. Yes, I was helped by being involved with such a beautiful peek at human potential. I was a better person because of my opportunity to know FC and the people I got to know because of FC.
There is a tradition in religion about tzedakah or charity which is credited to Maimonides. Taken from the website Ask.com, here are the often quoted words from the prophet Maimonides, the eight levels of tzedakah or charity. I have been aware of these for most of my life.
8. When donations are given grudgingly.
7. When one gives less than he should, but does so cheerfully.
6. When one gives directly to the poor upon being asked.
5. When one gives directly to the poor without being asked.
4. When the recipient is aware of the donor’s identity, but the donor does not know the identity of the recipient.
3. When the donor is aware of the recipient’s identity, but the recipient is unaware of the source.
2. When the donor and recipient are unknown to each other.
1. The highest form of charity is to help sustain a person before they become impoverished by offering a substantial gift in a dignified manner, or by extending a suitable loan, or by helping them find employment or establish themselves in business so as to make it unnecessary for them to become dependent on others.
I am struck by the idea that FC helped me at the first and highest level of tzedakah. Until today, I did not realize the gift it gave me. It enabled me to be a better speech pathologist as well as a better person without asking any recognition or thanks. FC enabled me to be a better person and then it retreated into the background. What a gift!
For people who don’t speak: Well, I falter here. This is the source of my pain. My thoughts of all those people who could have been communicating for years and have not, cause me to lose my voice and stuff disappointed feelings in my gut. Well, what can I say? I have mostly questions to ask and re-ask. Besides freeing and then recreating Prisoners of Silence (the title of the 60 Minutes TV show that effectively shut down FC), what did FC being there and then being banned do for the people with Autism and other disorders? Well, they got to shine for a time and some of them were able to continue to use FC and some became independent typers and that changed everything for them, everyone who knew them and for the world by their influence.
What of those who came after? All those people who have Autism and don’t speak effectively and could have been benefitting from FC and the expectation that they were much less disabled cognitively than had been assumed? Well, what we saw was an explosion of people with the disorder. Today, 20 years later, we have experienced an epidemic of people diagnosed with Autism worldwide. I don’t know what to make of the incidence change and neither does anyone else as far as I know.
Why did we get to see it work and have it taken away? It was a gift. I just concluded that above. It was a gift just for some? Why was it only for some people, people who lived at a certain time? Why did they experience typing and then have to stop typing? What is the function of research done to disprove something? My experience is that research done to disprove something ignores the, perhaps statistically insignificant, group of subjects an approach does help. And, in this case, research came up with an answer that was not the truth. Biased research. Inability to see the truth in the typing the presumed retarded people were producing led to experimental designs which were not do-able for the subjects. These subjects, people who fall at the extreme end of the continuum as far as severity of disability is concerned, were not able to participate successfully in the experimental tasks. In the case of FC, it was, in my opinion, the design of the research task that contributed to the strongly significant, but incorrectly interpreted, results. I suggest that we should have learned that the subjects could not do the tasks concocted to test the approach that the experimenters sought to disprove. What a painful lesson. FC disappeared because of research done to do away with it, not research to study and understand it. So, it was done away with.
When my daughter was away at college a few years ago, she took an intro course in my field of study. When they studied Autism, FC was mentioned as being a hoax. My daughter coincidentally was sitting next to a fellow college student who had grown up with her sibling who used FC to communicate in their home daily. After class, the two students went to see their teacher. However, no matter how persuasively they argued, their teacher was unable to show any flexibility of opinion. It was a lesson in closed mindedness for my daughter. Was FC a lesson about skepticism and close mindedness? I certainly reflected on both topics often in my mourning years as I struggled to understand what happened to FC. In addition, I was further inspired to write this today because of my daughter’s experience. If a college professor in my field could be so sure that FC was only a hoax, then I was needed. I am needed to speak up and help all mankind have a bigger and richer experience with our neighbors who don’t speak. I am needed to be the best I can be. Right now.
For the World: Well, FC spread throughout the world quickly. I saw books written using FC in many different languages published and for sale. Hundreds of people had the privilege of communicating with people via FC who would not have been communicating otherwise. The world included a larger voice of its people for a time. I and others had the experience of coming together and establishing the Science of FC. We wrote standards, books, Theses and Dissertations. We came together as a world forum and developed the Science and then we stood back and watched it go away. We got the glimpse, all of us. And we knew the chance to live in the truth to be fragile.
Final Thoughts: Now it has been another month since I wrote the first part of this story. I had a fascinating experience this week I want to add. I think I finally got some insight into the questions I’ve been asking. I had the pleasure to attend a gathering at a local book store for a book signing. The book was about young adults living in my community who spell on stencil boards with a pencil they hold. Their helper (mostly their Mom or Dad or Teacher) says the letters out loud as the person with muteness touches the pencil to the letter and then the helper says the message out loud (ie. G-l-a-d-space-t-o-space-s-e-e-space-y-o-u -space-t-o-o. Francis says “Glad to see you too”). These are the babies of FC who found one or both of the centers that came to my city to help teach communication-independent communication- I mentioned earlier. Spelling independently to communicate. Twenty years later, here it is. The promised land. I am seeing the promised land emerge. I had to wait a long time, but here it is. These authors would have been babies or about to be born when FC was banned. Now they are published authors with their words in The Golden Hat: Talking Back to Autism by Kate Winslet, Keli Thorsteinsson and Margret Ericsdottie. The title of the book is from a poem by Keli Thorsteinsson, a poet who has nonverbal autism and types independently. He has given me permission to quote his poem here.
THE GOLDEN HAT
THIS BOY HAD A GOLDEN HAT.
THE HAT WAS MAGICAL. IT COULD TALK.
THE BOY DID NOT HAVE ANY VOICE. HE HAD AUTISM.
HIS HAT WAS ALWAYS WITH HIM.
HIS HAT WAS LOST ONE DAY.
NOW HE HAD NO WAY OF TELLING THEM HIS STORIES.
HIS MOM AND DAD BECAME SAD.
THEY TAUGHT HIM SPELLING ON A LETTERBOARD.
IT WAS HARD.
It is a beautiful coffee table book with stories about the lives of young adults who have nonverbal autism finding their voices through independent typing. Then, there are photos and messages from 30+ well known people who responded to an invitation from Kate Winslet to include an interesting picture of themselves wearing a certain hat she sent to them and give a one line message. The independent typers who do not speak orally now speak by typing independently. They are given communication opportunities, attention while they spell out what they want to say and their messages are responded to logically. They were at the book store to autograph the books. I got all their autographs, of course, and their book looks great on my coffee table.
May all people who have nonverbal autism find a voice. Amen.
Stephanie Sherbel Jasuta is a Speech/Language Pathologist who has been in private practice for 30 years. She has a Ph.D. in Communications from the University of Texas at Austin. Her Dissertation was about the first fifty words in young children’s vocabulary and the pronunciation patterns during that developmental period. She has specialized with children with speech/language difficulties in early and middle childhood, with autism, and with people who do not speak. She has her private practice in Austin, Texas which is called Speech, Language and Hearing Services, Inc. Dr. Jasuta has been married for 35 years and has two children. She is an occasional author, writing articles for The Jewish Outlook and Reader’s Views.