Today was the orientation for a new program that I am part of: Disability Voices United‘s Self-Advocate Speakers Bureau’s training! I am so excited to learn more about changing systems through public speaking. And I love that a diversity of disabled folks are included.
It made me think of those days in special education. That is where I first mixed with people with different disabilities, but it was in such a demoralizing and dehumanizing context. And now I am in this advocacy program with others who have been marginalized and who now are ready and supported to become powerful advocates. Such a contrast!
I am so excited to learn from this program! And to meet other folks from other disability communities!
It has been far too gloomy and gray in San Diego lately. I am so ready for baking hot summer! But all the same, I have felt so hopeful in my heart. After the last round of dysregulation, I have come back more strong and resilient. And I am so excited for things to come! This includes Motormorphosis in late July, for which I will be on panels with Fidgets and Fries’ Tiffany Hammond, Nigh Functioning Autism’s TJ, and of course esteemed Spellers such as Gregory Tino. And I am of course excited to socialize in person with my people!
And I am finally working on my next passion project. This is an essay that I hope to publish somewhere with a broad audience. And I am going to be teaching part of Spellers Center summer school in Carlsbad. And I surfed for the first time in months last week. I am so feeling that the year is unfurling gloriously.
Of note: yesterday was the fifth anniversary of my dad dying. And though it was sad as always, I felt much more resilient this time. And I feel he is somehow proud of all I am doing. I would normally write a post about him to mark this anniversary, but I feel like keeping it more private this year. I just want to say how much I love that he would be proud.
And this is my rambling update for now. I hope you all are finding moments of sun, literal and figurative, and feeling pride in all that you work to do.
As always, and as I knew but had a hard time remembering, the dysregulation storm has passed. The river floods and it recedes. There are tides and seasons.
I felt so low, so discouraged, so very frustrated that my hard work to strengthen my regulation seemed in vain. But now I can more clearly see that there has been great progress, and that my bad bad bad days are fewer. And my recovery is faster. This will be a lifelong process. And that is okay.
These days are so full of effort and hope and worries for the future. I am so absolutely and completely appreciating this challenge. With communication, I can truly see a path to a better life, and though that path is arduous at times, or really most of the time, I am so eager to pursue it. That is all for now, because my dear friends Jeremy and Chantal just arrived for a coffee shop hangout!
Whew, I had the worst couple of days! Such intense dysregulation. Wow. My throat is still sore from almost continuous shouting, and my body is so very exhausted. My compulsions were so strong. It was so scary! And so disheartening, too, because I had been so proud of my progress in my regulation. It was among my worst experiences being dysregulated. But at least it was short and I feel better now.
I wrote this poem yesterday as I was still in the grips of it. I am so grateful I can still spell when dysregulated. It helps to be able to express my struggle. I am so thinking of my friends who also struggle with this.
Your Friend,
Danny
Madness
If I ever entertain the notion
That I have, through Sheer hard work and mindfulness and
Wanting it all so all so all so
Much,
Found my way to calm
Stretches
With sandy white banks sloping gently And languid cicada hums hums hums
I want to advise that this is an emotional poem. I realize many of my poems might elicit strong feelings of sadness, so I am going to be more mindful in presenting them.
So. This poem. It is about five years since my dad was put on life support after weeks sick with the flu. It was such a difficult time, in between hope and despair. I always thought, each day coming home from the hospital, how he would love the flowers blooming along the walkway to our front door. I know Tara thought of him admiring them upon his return home. But he never returned, at least not in his physical form.
So each late spring, the fragrant jasmine and roses bring a sweet sadness to our hearts. But it gets easier each year.
Here is my poem on this. It is for Tara as much as it is for me.
Your Friend,
Danny
—
HOW ARE YOU THESE DAYS, by Danny Whitty
So we somehow came this far
The way and the how obscured Among weeds and wildflowers
It has been a little bit! I have been so struggling to sleep lately. It is so weird. My body feels so restless, but also is very calm. Like a quiet storm. It is so unusual, but it has been going on for a week or so now, maybe two weeks. I can’t get my body to sit or lie down for long, unless I am actively engaged in something. We have tried magnesium, zinc, iron, CBD and CBN, valerian, melatonin, and more. I finally requested ZzzQuil, a big step for me because I don’t love what Nyquil and similar do to me, so I have always avoided them. But I was desperate. It helped a little, but I was still wandering around like a ghost all hours of day and night.
I have no idea what the trigger is. And it is so frustrating. I am so rundown. Oddly, my motor skills are sharp, sharper than usual. Like my initiation and autonomous actions are so strong. But my OCD is also strong. So I don’t know what to make of it. That and also all of my goals that I can’t work on because I am so tired make me feel so frustrated.
Here is one of the poems I wrote about this today. I am not seeking medical advice, though I appreciate the desire to help. I just share to give my feelings some air. And to share what it is like in this autistic and apraxic body.
I am so saddened over the loss of Nick D’Amora of CrimsonRise. I never met him but know many of his friends. And I feel like we Spellers have a strong bond despite distances that separate us. We feel each other.
He did so much with his time. He changed the world for many nonspeakers and their families and community. He is a hero. And it is so unfair that he had to go. So absolutely unfair.
I hadn’t known until recently that many of my peers have seizures. This also took the life of Christopher Finnes recently. And I am in awe of my friends who deal with epilepsy in addition to autism. I am so absolutely and profoundly feeling for them.
It makes me so angry that more research and work is not being done on the conditions and struggles we live with now. It is all fine to study the causes of autism, and I see why people do that, but what about the millions and millions of us who are autistic now? Do our medical issues, many of them chronic and severe, not warrant more research? Do we matter less than preventing, somehow, more people from becoming autistic? Do we have to suffer because we are inconvenient and marginalized?
At the heart of this is realizing how vulnerable and precious our lives are. And how it hurts to lose someone from our community when he and all of us had to work so hard to get where we are. I am so hoping his memory is blessed by us all working to make this world better for nonspeakers. Please consider supporting this campaign to continue his legacy.
Join Barbara Pandolfi D’Amora and her family in fulfilling Nick’s beautiful mission in life.
He cofounded CrimsonRise. As our cofounder he advocated for two things.
– To reach every speller out there.
– To build a place for spellers who have become fluent. An organization that is a prototype of what spellers do when they lead and build their own organization.
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
Danny With Words 