On March 31, we will join our director Gerry Wurzburg (Anschutz Distinguish Fellow @ Princeton) for a screening and conversation 4:30pm McCormick Hall. April 1st we have several session with students on campus talking about Art (Larry) an Advocacy (Tracy). In advance, Princeton Senior Claire Neuthern asked Tracy Thresher a few questions as part of her Senior Thesis on “Activism and Autism”.
Do you align yourselves with the broader autistic self-advocacy (including organizations like the Autistic Self Advocacy Network) movement? Why or why not?
I am a person with autism who benefits from accessing good resources and I would not say that I align myself with a particular group.
What causes are you most passionate about advocating for?
I love talking to others about my challenges with communication and what has worked for me. I also reach out to students and mentor them in hopes of helping them get through tough transitions in their lives. I am very involved in the self-advocacy movement and take part in Green Mountain Self- Advocates which is our head group in Vermont. I am also a leader at our agency group, we call ourselves the Communication Alliance. We are recognized for our work around communication. It is fair to point out that all of our alliance members type to share their thoughts.
What do you find to be the most effective way to advocate for change?
You must have a strong voice and be willing to go out on a limb for what you believe in. Personal responsibility for your actions is a necessary part of change. I have lived many hardships and I also evolved to being the person I am today, but a big part of changing is letting go of old feelings and routines. I am better with the experiences, but I need to say change is hard and necessary.
The focus of the film is for you two to meet other autistic adults like them all over the world: What was powerful to you about this mission?
I would say knowing there were others miles apart experiencing the same struggles as me. It was a pivotal moment in my life and I am blessed to have autism. I used to hate with a passion the way I was and the weird things my body does made me beyond angry so I changed. It fueled me to be an advocate and educator. Yes it is a hard journey but it’s a journey that needs to be shared.
Big-time flash mobbing my happy dance ostentatiously like Hollywood on Facebook makes me jubilant. (The photo with my birthday posting was taken at Green Mountain Self-Advocates’ celebratory twentieth year anniversary Voices and Choices conference.) I particularly like the invitation to try out facing my fear to try out whitewater rafting. Athletic Harvey pushes me through navigating positively to experience new first time adventures. I thank patient Jeanette for having a positive guiding approach to help keep me grounded with partying and cake on this week’s menu. A huge gratitude is my state of mind reading the wishes of my passionate cheerleaders. Of course, my Beatles boxed set and happy slippers from Mom, Dad, Jeff (my brother) and John (my friend) make me silly and happy. I love my family and will party hearty with our birthday bash this weekend to celebrate Mom, me and Jeff being born. I want to say I am excited to be treated to seeing my pal Naoki in Syracuse. Naoki we need to have a full on reunion of wretches to further promote inclusion.
1. Tell us how the documentary has informed your subsequent career.
Oh, in such fabulously wonderful ways. My passion is on fire since the release of the movie. I have so much more peace, with my life purpose shining more brightly than my autism. My productivity is much more on the fast track of great connections. The typing train is humming up the communication ladder picking up great passengers on the journey to language. All aboard!
2. Did you think about what you wanted to do career wise as a child? If so, what were your thoughts then?
Honestly I lost my dreams in my childhood. Lost in the label of “bad boy” I became a lost boy. I gave up my hope.
3. How has your AAC device helped you in your work?
My iPad is potentially the big time mainstreaming gadget of this generation. Teens look to Larry and me as cool cats, texting on the big world face book page. Training with Guru Harvey is the key though. IPad is useless to me without trainer Harvey.
4. What do you consider your triumphs to be in your work?
Each kid or family who makes life their own with communication is a big time victory. People like Larry and I, who find their voices in adulthood, are the fire of hope.
Proudest moment for me would be receiving my Master Trainer certificate from the Institute on Communication and Inclusion last year. I worked long and hard for many years with Harvey’s support to earn top notch credentials.
5. What do you consider your struggles to be in your work?
I must be one of the luckiest people in the world. My team is solid like granite. My dynamo Jeanette is my rock in my daily work of organizing for my presentations, email, exercise and all of the elements of productive performance. I also have fiery passion for helping others, Rachel. Rachel is the best case manager. Others have tried but Rachel pushed her training like no other.
I also have Guru Harvey to partner with to take our message of “purpose in life” on the road. I want to add; Harvey and I also educate others about movement differences and supported typing. Our big time message is “Presume competence” and “Not being able to speak is not the same as not having anything to say.”
6. What are your career goals for the next 1 year? 5 years? 10 years?
My long term goal is typing with proximity support. Putting a time line on typing without my facilitators’ touch provokes anxiety in my moving to a potentially rough terrain of self-monitoring. However, to mightily prove to myself I have control is hope to lead others in their journey.
My career goal is to produce my own script for an autobiographical documentary of my work as a self-advocate. I would also love to reunite with my friends to do a wretches sequel. Lofty goals…I might hire George Clooney for my film.
7. What kind of advice would you give to younger individuals living with autism about their future work?
I would type this: find your passion, team up with your allies, make plans. Find your purpose in life. It is my experience that living lost in autism is not purposeful. My life is productive thanks to dedicated people like Harvey. I also have Rachel, Mom and Jeanette to keep me on track with my goals. Commitment from true allies is my advice; partnering to accomplish your work goals is the key to success.
8. Describe a typical day for you at work.
Jeanette picks me up at 8:00; we walk on the bike path which opens my movement to type. Walking is my release of bottled up tightly anxiety. I work on several committees in Vermont which in addition to my self-advocacy work, mentoring high school students and training facilitators keeps me busy. I would like to possibly work like George Clooney in blockbuster movies with Julia Roberts but her aura is too fast and loud.
9. Please tell us how your career began.
My career as a self-advocate has been supported by my guru Harvey from the start. Harvey is the person who listened to my passion to want to be in the mix with others to make a difference in the lives of quite intelligent people with disabilities. Harvey explained to me self-advocacy and introduced me to Green Mountain Self-Advocates (GMSA) and I have loved being on this journey of inclusion. I have been plotting out my big time career time line in my mind for a long time. The movie launched my career. To be in this fabulously making people think role is the hope and purpose of my life.
Yesterday I partnered with my good friend, Max Barrows, to present to education students at the University of Vermont. Max is the Outreach Coordinator for Green Mountain Self-Advocates. Together, we shared our frustrations on being misjudged based on our disability. More importantly, we used our success to illustrate how self-advocacy is mighty important to make our lives purposeful. My life is one dedicated to teaching others. Presuming competence and communication is key. My advice to education students is take time to listen and above all presume competence. The class we presented to shared personal stories of family members that have felt the pain of being misjudged. Together we can break down the walls that continue to exist in the minds of those who have misjudged people in the disability community.
This past week Tracy shared his story at a Public Budget Forum that was aired on Vermont Interactive Television. Jeb Spaulding (Secretary of the Vermont Agency of Administration) was part of the panel to answer questions that were presented. Tracy’s opening remarks are as follows: “I would like to tell you my story of success is due to the supports I receive through Washington County Mental Health. I have prepared a statement to illustrate how important Developmental Services are. Our People’s Budget is mine too.” (Tracy’s statement is attached.)
Tracy also presented at the Washington County Mental Health annual Legislative Breakfast. Tracy asked the following question: “”I am Tracy Thresher from Barre. I have priorities for my life. Quietly ignoring my communication needs is not the way to make my life one of purpose and contribution. I would like to know the plan for determining if our needs for employment are being kept high priority? My work gives me purpose. This is my contribution to my state.” (Tracy gave his statement as a printed handout to the legislators. Same as attached document that he shared at the Budget Forum.)
What are steps to take in supporting a student with limited communication to develop their skills through typing?
You ask an excellent question. Please understand anxiety and a lack of confidence can be major obstacles along with movement difficulties. This makes it hard and scary to make the leap. Bridge builders like Harvey and Pascal are utterly important. You must see the possibility in the person. If Larry can type your student certainly can.
On his development of literacy skills and the relationship with his speech
I understand everything I read and what is said but my auditory processing can go haywire and it can look like I don’t understand what’s said. Also my speech is highly unreliable and makes me look stupid. Autistic people are usually wired for literacy so please think that kids can read and expose them to reading like any kids.
Ideas on how to help a young boy with overcoming his sensory challenges and moving towards communication
I really can’t say why. It is the way he is wired up neurologically and needs a lot of sensory feedback to deal with it so he should work with a good OT and get regulated, then work on communication to tell you his needs, feelings, and thoughts.
My fan Ling sent the following email to me and Larry. I received her permission to post it. Her sharing of her own communication challenges insightfully hits the nail on the head. I hope my fans gather your stories of hope together for our “More like you than not” movement. Larry hammered out his “more like you than not” message with his astounding literary power punches. I hope to continue sharing the mission of inclusion with my Communication Alliance and Green Mountain Self-Advocates. Our plan is coming together to join forces to bring a learning collaborative into our local Vermont schools. The ladder to inclusion is conquered by working together in unity.
Thank you so much for your advocacy work, the film and sharing your lives with me. I am a jabberer and I was able to relate to you in my own way having moved from NYC to Brazil, and learning Portuguese for the first time. I had moments when I languished in my inability to communicate, my thoughts backing up inside me with no way out. I stuck out, people acted differently with me and spoke to me like I was dumb. I even had some people react violently to me because I had a hard time communicating. In my own experiences I could find ways to relate to yours and those of the other autistics featured in the film.
I really did want to say thank you for opening up my eyes to your lives and I appreciate the new things I learned. I think your advocacy and lectures are so valuable to regular non-academic people like myself. I believe we are more similar than not. I feel kids would really benefit from your work, since they are the next generation of policy makers and they will shape the future perceptions of autism. I’m sure many teenage school kids can relate to your experiences. Most teenagers especially have moments where they feel misunderstood, ostracized, and in general “different”. Hopefully they can see their autistic peers differently and also advocate for inclusion. When I was in high school I had a chemistry teacher who had turrets syndrome. His hands would twitch, he would bite them, and occasionally he would yelp. He was never treated differently and all the kids saw him as a teacher first, who also happened to have Tourette’s. I think we jabberers have the capacity to improve our perceptions and behaviors so don’t give up on us.
Thank you and good luck with your advocacy!
It has been too long with no blog my fans. I have been mentoring fiercely-interested students really intent on inclusion. The Browns River School in Jericho, Vermont is the latest in our outreach to work on inclusion and the students in Jericho truly are mentors. This is my eye opener typing on a dreary morning: “Good morning Jericho. How are you on this rainy wet day? Opening up your minds to competence is the work for today so sit back, fasten your seat belt and get ready for a wild Tracy and Larry ride.”
That intelligent typing teen would like to be working in self-advocacy. Thad may not realize he is on the right path to fulfill his dream. Autumn typed that her goal is to type more independently. Having expressive typing to write goals is your first step; keep plugging along.
It was great to see long-time friend Gigi who is guru to Thad. My typed responses to Thad and Autumn follow:
Thad asked about having me as a mentor. I typed “You betcha Thad. I now mentor students and would be happy to work with you.”
Autumn asked about how she could become more independent in her typing. I typed “Harvey can show you Autumn. With patience and hard work and lots of practice you can do it.”
I think the students in Jericho, Vermont rock the inclusion movement. They understand the difference between tolerance and acceptance. Thad and Autumn have much to teach, so tune in Jericho.
The big typing of my friends, Kris and Scott, is a compelling argument for inclusion for all people. I met a young film maker, Adrian Esposito at a self- advocacy conference in Albany, NY last fall. Adrian made a film “We Can Shine-From Institutions to Independence.” Jeanette and I connected with Adrian and his Mom. My friends and I recently gathered to watch this history of moving to community life. Dayna and Jeanette looked nervously at each other like it was too much for my young typing pals and me to watch. I think it is important to see the horror Larry may know from the scars he bears. My heart is torn knowing my friend lived without communication. Larry is now a beaming beacon of light in his community. History is our lesson to cease isolation and open the door to inclusion.
Following are the voices of my typing buddies:
Kris: “The movie was heartbreaking at times for me, but important to see the contrast. Institutional life doesn’t allow personable characteristics to show. Working outside of the institution, in the community builds a person’s quality of life, allowing relationships to be built and equality to manifest.”
“I really had a great sense of relief that I was raised in a family with love and a mother who is my rock. I am graciously pleased that quality of life is a big part of our supports. I love that we can have a voice and know others are listening.”
Kris, Scott and I rock the self-advocacy movement as members of the Washington County Communication Alliance. Our mission statement is: “The Communication Alliance is a group of self-advocates who have communication challenges and type to express ourselves. We advocate for an individual’s right to communicate, for Quality of Life initiatives and for increased public awareness and education.” We are also members of Green Mountain Self-Advocates (GMSA). Let’s come together to rock the Inclusion Movement. The time is now my fans and allies.
The main thing that diminishes my quality of life is the way some people think I need to have things in routines. Let’s say meals for example, I think people get stuck in their support like serving me the same old meal. I need to have lots of variety in my life just like the food choices need to be varied. Got inclusion? That applies to diversity in communities making room to move our plane of intelligence from plateaus to pinnacles of sharper intelligence.
It is because of inclusive environments that wretches like me have communication. The tipping point has come with people like me demanding proper support to be heard.
Let’s be positive in our leading the inclusion movement as the great leader Dr. King did in his day.
We also have dreams, more like yours than not.