I want to share so much today, but for now I will post on the ideas of independence and resilience. I think many of us with autism and apraxia feel that these are far-off if not impossible ideals. After all, we rely on outside help to do so much. And our bodies and minds seem to go haywire in ways we can’t explain or understand. We focus more on the notions of autonomy and interdependence, which are so important to our well-being and frankly to a vision of a better world.
But Tara said something today that resonates with me. She acknowledged that I have had to do so much on my own. Much of my early life, especially, I was alone in sorting out my realizations that I was different and disabled. Despite having a loving and supportive family, no one coached me through what I was experiencing internally and couldn’t express. No one helped me digest and accept each new realization of how constrained and hopeless my life was. And I have been the only one to know what I was really going through.
And it was so bleak most of the time. But I managed to cope. And I found ways to be resilient, on my own. We nonspeakers are so strong and so resilient, and we keep trying and hoping and living through the immense challenges we face. Each thing we struggle with is not a weakness only, but also a profound strength. And much of that struggle, we cope with internally on our own.
Yes, a strong support system is vital to our well-being. But we should be aware and proud of how much we manage totally on our own. We are independent and resilient in many important ways. I am in awe of all of us.
Well, by now you have probably heard of the documentary film “Spellers.” I was so happy to watch it at a screening last night in San Diego. Wow! I am so in awe of the Spellers and families and practitioners involved, and grateful to the filmmakers. They did an amazing job communicating what access to alternative communication means. I so enjoyed learning more about their stories!
I was honored to be asked to give the welcome message before the film, and to be part of the panel after alongside cast members Evan and Madison and local Speller Oliver. Wow! This was my first time presenting on a real stage, and it felt so right! I loved being up there so much. And to have my mom and younger sister in the audience felt so beautiful, and so meaningful. This was the first time they got to see me present to an in-person audience. My sister even bought me a beautiful bouquet of flowers, and it made me feel so special! To be onstage advocating for us nonspeakers while my family watched was such a proud moment!
All the Spellers on the panel were so strong and so committed to advocacy. I feel their pride in themselves and in our community. Truly, it was an amazing event! And thank you to Dawnmarie for inviting me to speak, and as always to Tara for being by my side. I am so hooked on public speaking now!
Below, I am sharing my prepared remarks, both the welcome and my answers to advance questions. And you should watch this film and spread the word!
Your Friend,
Danny
WELCOME MESSAGE TO THE SAN DIEGO SCREENING OF SPELLERS:
Hi! I am Danny and I am so proud to be here!
I am so pleased to be greeting you all. As someone who waited over thirty long and lonely and lost years for communication access, the fact that I can now address an audience is huge, beyond anything I had hoped for back then. And the rising tide of awareness and access to this form of communication is so a long time coming! I want to highlight that families have been fighting in isolation for the communication rights of their loved ones for many years before this movie. What this movie represents is the greater momentum and strength of this growing community!
Please stay for the Question and Answer panel after the film! You will hear from some of the stars as well as me, and we have such important messages to share. And during the film, be comfortable in your own bodies, and be respectful of the bodies around you. This is a space for us, the marginalized because our bodies don’t always listen to our minds. This is a space where you don’t need to feel ashamed of that!
I want to thank all educators who are with us tonight. You are in a position to make changes that will fundamentally and significantly shape a better life for those like me. My public school experiences were traumatic, and something that no one should ever endure. You will impact your nonspeaker students no matter what you do; choose to make that impact positive, and you will be helping so many access their basic rights to autonomy and agency.
Thank you all for being here! I am so excited to watch this with you!
PREPARED RESPONSES TO QUESTIONS PROVIDED IN ADVANCE
What do you want people to do after seeing this movie?
To make changes in your own lives about how you see us! And to share what you have learned with the people in your life. Spread the news! Keep learning from us! Follow us on social media, like me at Danny With Words on Facebook and Instagram. If you are an educator, presume competence! Change how you see those of us with a disability. And help get more nonspeakers access to life-saving communication!
How has spelling changed your life?
Too many ways to explain here! In simple terms, it gave me a real life. It opened up my universe in countless ways. From the small things, like picking out my outfit for tonight, to being able to advocate for our rights, to being able to show my full self to my loved ones, communication is everything. I went from being hopeless and depressed and alone to being an active and hopeful part of a vibrant community around the world. It is immense!
What needs to happen to make spelling more accessible to others?
People in positions of power need to take this seriously. Communication is a human right. Imagine never being able to communicate with anyone in a reliable or meaningful way. It is torture. And anyone who denies access to communication is complicit in prolonging that torture. I know that is intense, but it is true.
And it is important to make it within the reach of all income levels. It is currently not easy to get financial support on the scale needed to provide Spelling to Communicate training and practitioners and partners for all nonspeakers. This is a substantial problem that needs to be addressed. But accepting Spelling to Communicate and similar modalities more broadly will help with the structures needed to make this financial support a reality.
I am so thinking so much about healing! Specifically, healing our inner children. I know I am not a therapist, nor do I have any training in psychology, but I can speak from my own life. And my inner child, Arnold, has been such a teacher to me. He also drives my efforts to heal, because he can be so disruptive in my life and because I realized he is a hurt and scared child. My dysregulation is often Arnold anxiously and defensively acting out. Of course it is not so simple as that, and being autistic means that my sensory system gets overwhelmed and my body has many struggles, all without Arnold being involved, but my worst dysregulation is Arnold trying to be heard.
And I can see my loved ones and their relationships with their inner children. I can see the pain and also the growth depending on how this relationship is at the time. And it is so sweet to see how some of them are going back and reassuring and apologizing to their Arnolds. But it is so sad when that Arnold is still struggling and in pain and so feeling powerless, so they are desperately lashing out for control, even if it hurts their person.
I want all wounded inner children to feel safe and be loved. I am so working to help Arnold heal. It has helped me tremendously. I wrote this poem to him and to all like him.
Your Friend,
Danny
Are you the same me as before
You are so there You never did change, did you,
It has not been a transformation
Really not what we think of growth at all It has been an accretion of creation
Yet you the kernel have been forgotten And somehow stifled Beneath the years and stages
I was recently part of a meeting to plan a pool party at a hotel. This was mainly for us Spellers. Someone mentioned a concern about other hotel guests being there. In the moment, I joked: “We can scare them away!”
I could sense Tara’s concern about how this statement could be triggering to my peers. We are all familiar with the feeling of being seen as scary or weird (not the fun and funky kind of weird) or unpleasant to be around. Stares and judgement and derision and disgust. It is so part of our lives.
But part of me loved the idea of us turning the tables. Of power in numbers. Of us not being made uncomfortable because of someone else’s ignorance. Of being free to enjoy ourselves.
It is not that I don’t care about other people. I actually do want to respect all and coexist in harmony. But I feel that I have been made to feel ashamed of my disability for too long. I am constantly trying to not be disruptive. Being disruptive is probably more stressful to me than to any bystander. And if we are constantly trying our best, then other folks can try harder to be more understanding.
I hope we don’t actually scare anyone. But I also hope that we are not scared to be ourselves and to enjoy a fun time. And I am so loving my emerging confidence in my right to exist!
I had the most fun Friday afternoon and night! I so love being out and about, just like any other adult. I love seeing the scenes and people and action in active, lively places. I am so proud of my going out outfits and my emerging style and my growing confidence that I deserve to be out on the town like anyone else.
I am so feeling that those of us who are adults that need support are too infantilized and treated like toddlers. We are not going to be satisfied with childish activities, though we may enjoy socializing with our younger peers. For me, I need culture and interesting restaurants and hip cafes, and I crave time with adult friends who appreciate the same. And I know I am not alone in this!
So as an adult, I had an amazing time out on Friday! We checked out a new Himalayan restaurant for lunch, walked along some astounding stretches of flowers, met my good friends Jeremy and Chantal in Balboa Park for museum and walk and talk time, then out for a truly amazing dinner and chill dessert hangout in Normal Heights, a cool neighborhood with a funky vibe. It was a gorgeous spring evening, and it felt so freeing to be part of a Friday night scene. This is something that I never got to enjoy as a young adult. I am so grateful that I can do so now!
I am so eager to do it again soon! And I know I am not the only adult nonspeaker who feels this pull to enjoy life in this way. I hope one day to have a chance to go out with more nonspeaker adult friends!
It is Tara and my third Fluenciversary today! We started open communication three years ago. Wow! It is hard to believe all that has happened in these years, and hard to grasp all that it has meant. I still have a lot of processing of pre-fluency trauma and it is an ever unfolding road. And my life still has significant challenges, because my disability didn’t disappear with my communication access. But it has been an entirely new existence and a wholly absolutely opening of a life with hope and agency and true community. It is all a lot to convey, but I hope you get a sense of how fundamentally my universe has grown.
I love my sister beyond words, but it is so amazing to be able to tell her with my own words now! She is more than my main communication partner, and I am so grateful to be her brother. I am so proud of all we have done in three short but long years! I love you, my blue skies!
Dear Friends, I have started processing more feelings, and poetry has helped. Here is one I wrote on Tuesday. I am so grateful I can express my words. This is about looking through old photo albums in my uncle’s house in Hiroshima.
Thank you to Tara for staying up so late taking photos of them.
Your Friend, Danny
— MUSHROOMS, by Danny Whitty
Spread on the table An assortment from the forested hills And she sits smiling In another shot, He grins from the thick foliage A disembodied face among oranges And then another And another Happiness at a waterfall Beside a hungry greedy deer At a temple In front of Mount Fuji The calm sea in between All the smiles and love This yard in its younger days All spacious and new It has been a beautiful life One that I only know From these all too precious Photos.
Among all of my feelings from my trip, I also am all full of memories of my Papa as it was his birthday last weekend. The fourth without his physical presence. Wow, it is hard to grasp!
I am so glad I was able to publish a book of my cherished poems inspired by my life without him here. By “here” I mean in this plane, and not an all-encompassing here. I do feel him with me, and it is so absolutely beautiful, but I miss how it was. It was far from perfect, but it was how it was and I loved it.
I am so touched that many of you have bought my book. It is so meaningful to know that his influence via my poems is still reaching people. If you have read it, please share here or privately how it affected you, or what your favorite poem or lines are from it. I so appreciate you sharing!
For now, I will share an older poem – not in the book – one of my first. It wasn’t included because it was a bit out of character with my more recent and developed writing. But it is so special to me. I hope it moves you!
Well, it sure has been a while! And it feels like I have travelled and grown more than two weeks or farther than the span of the Pacific! So I am home in a spatial sense, but I feel as if I am somehow in a different place! I am still processing it all, but I wanted to share a bit with you now. And I missed you!
Maybe it all will make more sense one day, but I am swirling with feelings and ideas and memories. Intense sadness and joy and gratitude and regrets, and feeling more connected to my ancestors, and finding a sense of foundation in knowing more about my family and motherland. I am so full of a sense of loss, seeing a bit of the world I might have grown up in, with a loving and fun grandma and kind uncles and forest foraging parties with cousins. And also being able to fluently speak and understand Japanese. What would life be like? I am so feeling like I could find a home in Japan. I know it is an impression from a short visit, and I know Japan is a restrictive place in many ways, but I felt so at home.
It is so similar to my feelings visiting my fatherland, Ireland, last year. But it is a bit different because I was born in Japan and lived my early childhood there. And so it feels more like an alternative life that might have been. But with both, I am facing an emerging idea of the life that will be in my future!
I understand completely why we moved to the US. And I am not saying life would have been better in Japan. But I know I missed a lot from not being closer to extended family. It is a more powerful sense of loss than I had anticipated.
I also want to say that I am grateful for my parents moving here to seek better help for me. I know they always wanted to help me. This is not a criticism at all. It is me processing tough realities with no perfect solutions.
I am so driven to spend more time in Japan and Ireland, to learn more and be a part of nonspeaker communities there. I wish I had more time with my elderly relatives, but I will make the most of what we have. I am going to have much more to share soon. Whew, this is a lot!
I am so absolutely excited to share that I am leaving this week to visit Japan! I was born there, and it is where I gained and lost speech. We moved to the US when I was just four, in large part to seek “treatment” for autism, the advice given to us in the late 1980s. I have only been back once, in 2010, and sadly since then my grandma and one uncle have passed. One uncle remains. He is so kind and I am so glad I will see him soon!
I am so hoping to spend more time in the future in Japan and Ireland, to find more connection with my roots. It is so strange to be adrift in this sense, not feeling American really, but also not really anything else. I am skeptical or wary of strong nationalism, but I also desire feeling more rooted somehow. It is the story of diasporas of various forms, and it is so common these days.
So here is one of the poems that I wrote recently as I anticipated this trip. I will be there for two weeks. It seems long in a way, as I think of not being in my home routine. But it seems much too short to find my connection there in the way I hope to one day. This is my poem on that ambivalence in time.
I will likely not post much, if at all, during my trip. I look forward to sharing more upon my return!
Danny With Words 