Wow, it feels like spring this week in San Diego! I love it. It is amazing what sunshine and warmer weather can do for your mood. I am so feeling lighter and more positive.
I am also feeling a lot of energy these days. It is good and bad. It can switch from happy energy to anxiety in a flash. So it is fun then destabilizing. Whew. Pretty tiring!
I want to share a video of my happy gallop. Since I was little, I have loved bounding around and singing. If I am at home or outside, I can gallop to my heart’s content. But it is disruptive at times. And sometimes it can overhype me and send me into dysregulation. But lately, it has been a fun way to express joy.
I love watching the sunset from our deck. It is so beautiful and soul-stirring. And so it inspires happy gallops!
I wrote this poem today, and want to share it with you. I rarely share my creative writing here because I am saving it to submit to publications. But some poems are just fun to share. This is based on my recent dive into astronomy with my mom, and also my ongoing internal quest to figure out what it all means.
These days have felt full of intense and scattered energy in my body and life. There is so much I want to delve into. But it is overwhelming to think about it now. I am going to just flow with it for a bit. Poetry helps me express feelings and ideas without me needing to have much clarity on them yet.
So here is a poem for you. I would love to hear what you think.
Your Friend,
Danny
I AM STUCK
In this body So entangled In this life So entrapped On this planet Always in orbit Governed by Gravity In this galaxy Just one of many In a universe That I try to Understand through Documentaries and online courses That answer nothing Of my true question That is Why me?
Wow, a lot is going on in the news! It is dizzying. Don’t worry, I am not adding my voice to the chaos just yet. I instead want to highlight the question of worth. I think many disabled folks are feeling even more than usual the harmful sentiment that their right to a fulfilling life is not valid. This has been on my mind a lot recently. Well, it has always been on my mind, but in a more urgent way recently.
Who has worth is a question of values. I believe that each human life has worth. But others believe that only those who survive cutthroat and inherently unfair competition are worthwhile. This is a fundamental divergence that comes down to how we envision the world we live in and the world we want to live in. I believe in my core that I deserve to have a good life. My loved ones believe this, too. But I can’t convince someone whose beliefs are based on a core value that if I am not able to do things on my own, I don’t truly deserve to exist.
I think it is good to help the vulnerable among us. Doesn’t it make us feel good to witness or be part of actions that help others? I would rather exist in a society where all are supported. It would be a kinder and more vibrant world. Might we sacrifice some notion of progress in such a world? I counter: What are we currently sacrificing to attain this never-fulfilled goal of more production and economic yields that somehow fail to uplift most of those working hard to get by?
I am of course biased in my own self-interest. But I feel how much my loved ones truly believe it, too, though it would be easier to deny my right to a decent life and relegate me to a pointless daycare program or institution. I feel how my story and words move people around the world. I can confidently say that my story has made the world a better place. That matters.
I challenge us all to stop relying on the assumption that there is an absolute right or wrong in these perspectives. Fairness is not guaranteed by the universe. But we should embrace our choice to cultivate a world that we want. Sure, maybe in prehistoric times, my disability would have gotten me killed early in life. But we don’t need to restrict ourselves to some imagined legacy of ruthless, unfeeling survival. We exist here and now, and we can shape a better world for all.
That is all a bit rambling, but I hope my points are clear enough. I believe I deserve to have a good life. Many people agree. Let’s make sure more and more of us are able to enjoy lives of dignity and shared care.
I am sharing my raw feelings about a controversial topic. Some of you have asked me about it. I am not sure if it is wise to post this publicly. However, as you presumably respect me and care about my perspectives, I am going to share it. Note that these are my own responses.
In short, I am pissed off about the Telepathy Tapes podcast. I am dismayed and angry. Yes, I know that some spellers might disagree. But all of the ones I have chatted with are similarly upset. I don’t want to hear anything about gatekeeping or silencing; that is what the producers and promoters of the podcast are actually in danger of doing to us. Their carelessness is a risk to wider access to communication.
If you are not aware of it, this is a podcast about how nonspeaking autistics are telepathic. It is super popular. But I urge care in following it or promoting it. It claims to broadcast how special and underestimated we are. But it doesn’t consider the real and negative impacts on us.
There is already widespread skepticism about my method of communication. This podcast adds fuel to the skeptics’ fire. What is the plan for how the claims of our telepathy will actually make our lives better? Sure, people might marvel and see more potential in our minds, but they might just think our whole community is delusional or some sort of circus attraction. This is like savants being treated as a spectacle to be amazed by, not as complete humans with dignity and rights.
I am also so frustrated that this sensationalizing of a particular phenomenon that some nonspeaking autistics might have (I am not one of them) is gaining so much more attention than work driven and directed by nonspeaking autistic advocates. Do we need to be portrayed as supernatural beings to be interesting? Do we not deserve attention for the more complete stories of all we overcome and how we want to be in the world?
I don’t doubt that some of my peers experience telepathy. If a speller says they do, I trust them. I am hypersensitive to sensory inputs in a way that neurotypical people find difficult to conceive of. And I do find a rhythm when working closely with a good communication partner, but that is more like brains in synchronized activities like being in an orchestra. My feelings about this podcast are not based on whether I believe in telepathy. It is entirely an issue of how such a thoughtless broadcasting about it risks making spelling more difficult to access. If spelling is not taken seriously, the opportunities available to me and my peers will be diminished.
So that is how I feel about it. I don’t claim to represent all nonspeaking autistics, but I am also not alone in these feelings. Many of my friends and I have been upset and anxious over this. I am hoping you can understand why.
Please be respectful and thoughtful in your comments.
I am so energized by a recent trip to Anza Borrego Desert! I love the spaciousness out there. It is a special place.
Tara and I try to go at least once each winter. This year was too dry for the early superbloom of last winter, but I just wanted to be in the immensity of the barren and expansive hills and canyons.
So I forced Tara to hike a long dusty walk that she could have driven because I wanted to meditate while walking the dirt track to the wind caves trail. Three miles and change each way. It was tiring for me, but I loved it. To step among steep cliffs, between blinding sun and refreshing shade, a small speck moving along. It felt so liberating. I often ran and giggled out of joy.
And the view just past the wind caves is spectacular! I love it. It is so quiet up there, just the whistle of the wind occasionally blowing by. The silence is hard to fully grasp. It is incredibly peaceful.
The walk was so cleansing for my heart even as it made me dusty. It is still energizing me today.
Then we drove to chilly Julian for obligatory pie. It is non-negotiable.
I also loved the long drives there and back. Such beautiful landscapes. And Tara is the best road trip captain. I just adore watching the world whiz by as we listen to podcasts and music.
A new year and it is already so full. Awful news about the wildfires, a new administration about to take over, continued oppression in too many parts of the world. And that is just a few of the big things going on. It is a lot.
I am fortunate that my personal life is in a peaceful place. I am so loving our new home. It is a lovely place. It feels like a home already. I am excited to make new memories here.
It was heart-wrenching to say goodbye to the old home. But I fully appreciated living there. I fully appreciated all that I experienced there. I will miss it, but without regrets. This change is a good one.
I have a lot of exciting plans for this year. I can’t wait to share some of my schemes! This is going to be a great year. I am happy to have you all along with me for it! Let me know how you are feeling about this new year!
Well, this is the last day of 2024! I am still in move mode, which is pretty arduous, but the end is in sight. I am sick of physical belongings! I am going to assume an ascetic lifestyle from now on. The burden of possessions is real.
I love our new home. It already feels like a wonderful home. It is such a gift after months of worry. I am so grateful!
It has been a full but hard to characterize year. I achieved a lot toward autonomy and regulation. I am proud of all I did. It has been a year in which my community blossomed, especially my local friends. It is amazing to have several good friends in my area now!
I have great plans for this new year. I am so excited to focus more on developing trainings for spellers and their families and support teams. That is my main goal for my work. And I hope to be more and more involved in social and community activities with my friends. Of course, All Our Brave Hearts will be back, as well as Leo in Bloom magazine. And I have another fun project in the works. This will be a year of soaring high!
Thank you for being with me. Hope you all have a wonderful start to 2025!
Well, it is almost the end of 2024! What a long year. I loved so much of it, and learned a lot. A highlight was the All Our Brave Hearts podcast, a passion project for the year that reached hundreds of you. That is huge!
It is time to take a break from new episodes until next spring. I am full of ideas for season two! Please let us know if you have any ideas you’d like us to include. And let us know the brave things you’ve been doing lately so we can include them in Season 2!
Thank you so much to all of our listeners! It meant so much to have your kind responses. Stay tuned for more in 2025!
It is been a while! I have been having a tough time, with a cold and also the emotions around moving and also this time of year seems to be hard for my regulation for some reason. It is better than previous years, but tough all the same.
I am full of emotions about this move. I am happy with the new house. But I am so sad to leave here. I am very sensitive in that way. I am mister nostalgia. So this in between is tricky for me. I am so feeling the attachments to place and to objects I have had since childhood, but that we need to donate because there won’t be space at the new house. This downsizing is a good thing, but it is hard to let go.
I also asked my family to involve me in all of these decisions. That helps. And I am able to get my body to help my mom pack. I feel proud of that. I am going to enjoy making the new place like home. So I am not all melancholy.
Here is a poem I wrote today about the sadness of letting go. It helped to write it. I am so dramatic but I don’t think I am alone in these feelings.
Thank you for caring about my experience with this process. I hope you are all staying healthy and taking good care of yourselves!
Your Friend,
Danny
In the Interim
Here to there The to is a space Neglected Boxes half packed Pink post-its marking farewells To clunky but cherished Furniture to donate And measuring tapes A Christmas tree half decorated A garden half neglected For we are not able to invest In a later we will not see I am in between Clinging and reaching Clenched heart But I am not sure How to know What here was If not a continuation Of the previous there And in twenty years When I am a grizzled dignified Elderly gentleman In some European town Sipping tea outside a café And contemplating my next book I will not still be Sad about The things That will be loaded Into the cavernous truck To be driven out of my life.
Whew! I am over the moon to share that we have found a new home to rent! I am so excited to make it a cozy home full of love.
This has been an immensely anxious process. Tara in particular did a lot of work to help us. It is tough out there to find and secure a place. Not to mention my sadness over leaving our beloved home of nine years. It was months of uncertainty.
Our new home is lovely and has great energy. The view goes out to Catalina Island, where I had that amazing day trip in October. The neighborhood is quiet and peaceful. And we have space to garden and host smaller gatherings. It is a perfect place for our next phase.
Thank you all for your support over this time. It has helped me a lot during this difficult time. I am excited to write more posts and poems and podcast episodes from my new ocean view deck!
Your Friend,
Danny
P.S. This is a photo of me just after we got confirmation of the new lease, which came in during my online therapy session. A happy moment!
Danny With Words 