I am having an awful time. I hate that this happens and that it is still not clear why. It is the bane of my life.
I am so full of angry energy. The shouting and slamming things and compulsions are so distressing to me and my family. The dogs are terrified. This is awful.
This is a real part of my life. It is a real part of my family’s life. I hate it. Especially I hate stressing my mom. She endures the most of it.
There is no magic treatment. So I am always thrown into uncertainty over when I might feel better. That is the hardest part: not knowing when this turmoil might end.
I suspect the weather is somehow behind it. It is so hard to know but it is a possibility because I feel off in my body when the weather is like this. Who knows?
I will be okay. I always come through. But it is awful to be in the throes of this dysregulation.
Tara is back! My heart feels so happy. I really missed her. It feels like sunshine to see her again.
This month has been good. My aide and I have made great progress spelling. And I had some fun outings with my little sister. And my mom and I have been making our home more homey. That has all been so nice.
But I have been so unsettled. Yesterday when Tara arrived, I felt so serene! It was like contentment washed over me. I loved it!
Today I am restless again. I hate it. It is so frustrating. It is hard to stay focused on anything. I wish I could settle down and hang out with Tara. But I am too jumpy.
This is baffling. But I guess that is just part of my disability.
I have also missed posting on social media. I can actually feel more regulated when I spell. So writing this helps me calm down and allows me to say hi to you.
I hope you are all doing well. I am looking forward to posting more soon!
Well, we are back with the All Our Brave Hearts! podcast This episode is a collaboration with Spellers and Allies Advocacy Network at International Association for Spelling as Communication (I-ASC). This is part of our Communication Equity campaign to raise awareness of inequity in access to spelling as a communication method.
It is so important to recognize that access to spelling is unequal across race and socioeconomic status. We need to learn as a community to understand the barriers to this access and to develop solutions.
Because Tara is on her trip, we will not have another episode until mid-May or so. But I wanted to get this episode out to contribute to the Communication Equity campaign ASAP.
I am struggling with dysregulation today. It is rough. The worst part is that it is Tara’s last day here before she is gone for a month. I wanted to do so much with her, but I can barely sit to spell this. That is so disappointing. And I will miss her.
I am in a different situation than last year when she had her big trip. I go to a fun day program for a few days a week, and I have a great aide. My mom and I are learning all sorts of fascinating topics. And my other sister has some fun things planned with me! But I always miss Tara.
And I am so annoyed about someone copying my nonspeaking, very verbal design. I am absolutely disappointed that the parent of a nonspeaker would do that. And I would have posted about it myself, but it was too upsetting. I asked Tara to express my frustration, and I am agreeing with how she did. Thank you for your support in the face of this!
So I will not post much in April. But I am excited for Tara’s trip, and it will be a good month for me and my team. Take care all!
Your Friend,
Danny
(photo from a better regulation day, writing at one of our favorite coffeeshops!)
I had a delightful time yesterday! I presented to an intimate group at La Jolla Riford Library, on my communication journey and the idea of having a brave heart. It was so nice to see a mix of friends, family, new faces, and parents of young nonspeakers among the group. It was so good to know that these young nonspeakers would have a much earlier introduction to communication and that their parents would have so much more community and knowledge than parents in decades past.
I want to thank the Princeton Women’s Network of San Diego for inviting me. Tara graduated from Princeton, and I am so proud of her still for that. She is so not elitist, and went there because it had the most generous financial aid, and I am glad she could go somewhere that suited her intellect and talents. I am also grappling with the reality that while she was there, I was stuck in a depressing community adult day program. We discussed that juxtaposition, and her journey into becoming my main CRP and a more mindful and proactive ally.
Here I want to share some quotes from my presentation. Please think about them and share.
We had a lovely stroll around La Jolla Cove after. I was exhausted, but gelato and stunning coastal views are hard to pass up.
I am enjoying my day program, and my aide is great! But I have less energy now to post as often. I appreciate you all being with me!
Your Friend,
Danny
In text:
So the big thing to share here is that though my disability is inherently difficult, the way others have mistreated me made it feel far worse. And the way others care for me, show me friendship and respect, has made my life more joyful. There is a lot of power in this simple observation.
I am convinced that this is the key to a better future for all of us. To care even when it is inconvenient, to show kindness even if is not the most efficient thing to do, to see worth regardless of productivity, is the path to reclaiming our humanity in times of strife. We are not meant to be engines of production. We are built to love and savor the world, to find beauty in living, which we could immerse ourselves in while meeting our basic needs in a less skewed economic reality. Caring for the vulnerable is not a waste or a luxury. It is an intrinsic part of being human, of being a social animal.
But dominant narratives have taught many that some artificial goal of increasing economic yields, that most won’t directly benefit from, is the purpose of life. In this system, people like me are seen as impediments. This is ingrained in our collective consciousness. How many of you have measured your self-worth against your economic productivity? And how many of you have secretly struggled to find a justification for how people like me deserve to live and thrive, when it takes so much support and so many resources?
So to be me, in this reality, takes a lot of resilience and courage. I am still wrestling with internalized ableism, and that is on top of trauma and the inherent difficulties of my disability. I am often full of rage at how I have been mistreated and abused, at how my life is so constrained by the limitations others force on me, and at how many people suffer the same or worse. I could justify resentment against humanity, but I choose not to.
Instead, I am driven by compassion. This is a brave choice. To extend my heart in understanding people, when I have been so hurt by them, is brave. But it is also the only way I can face the world. Rage might fuel part of my advocacy and my work to establish more confidence in my right to exist, but it is a toxic emotion if it takes over how one sees the world.
Early in my communication fluency with Tara, I wrote the phrase “my brave heart.” I am convinced that my peers and I are among the most resilient and brave people in the world. We struggle almost constantly with our bodies, and with the mistreatment that comes from others. But we still show up in this world, full of compassion and hope. We are not to be treated as savants, but real people who just want to lead fulfilling lives.
I love this image of having a brave heart. It is so powerful to come back to it when I am having a tough time. It is my mantra.
So when I think of what the world needs, it is more brave hearts. Individually and collectively. To stand for a kinder and more just world. To claim the compassion and communal care that we as humans thrive with. It takes bravery in our hearts.
It is St. Patrick’s Day, and I am wearing green! I am half Irish, from my dad, and I am proud to be. I love Ireland, for our family there and its spiritual richness and natural beauty. I am grateful to have visited a few times as an adult, and I cherish memories from time there with aunts and uncles and cousins. I hope to live there one day!
This was a tough weekend. I got very dysregulated and didn’t sleep enough. So I am exhausted today. It was so frustrating to be so out of control. I was exhausted from my first week of day program, which was great but uncovered some past trauma from some dehumanizing day programs in the past. And my dad’s birthday is tomorrow, which is hard and makes me so sad. He would be so thrilled about wearing green and singing Irish songs today. I miss his light.
But I feel calmer now. And I am excited for a dinner of corned beef, cabbage, and colcannon, with chocolate stout cake. This is our family tradition!
I hope you are all wearing green! That and having a good start to the week.
Your Friend,
Danny
(Photo: with my family on the coast of Kerry after my dad’s funeral in Dublin, 2018)
Wow, I am so excited about this coming week! I am glowing. It is a big week! I was not feeling like posting about it, because I was nervous about getting excited and risking disappointment. But I decided to be open to sharing!
The main thing is that I will start at a new pilot adult day program for spellers, at Spellers Center ten minutes away. I am so eager to see how it goes! I don’t know if I will like a structured schedule long-term, but I am hopeful that it will be a positive experience. I am super happy that some of my good friends will be there, too.
And for supporting me at this program, we hired my first personal aide! She seems great. I am so appreciating how proactive she is, and her energy is great. I am hopeful that this will expand my options for how I spend my time.
Then I get to meet up with some of my buddies in Temecula for our monthly workout group. I love these guys! It is so much fun to work out together in a pretty park.
Then I will also get to hang out in La Jolla and North Park with my family one day. I love both places and spending time with my family is always a joy.
And on Sunday I will rest!
I am so full of joy anticipating this week. I wish you all good weeks, despite losing an hour for those of us in Daylight Savings areas. I hope to hear something you are looking forward to!
A gorgeous day here in San Diego! I love this place.
I want to highlight the Spellers and Allies Advocacy Network, of which I am a member. It is the advocacy branch of the International Association for Spelling as Communication (I-ASC). I have loved being part of this group for the past 4 years or so!
We are spellers over age 18, working alongside speaking allies, to advocate for ideas important to us. The current campaigns are Communication Equity and also Disability Aware Healthcare. I am on the Communication Equity committee, which advocates for more equitable access to spelling methods, particularly for BIPOC communities. This is so important. My black and indigenous peers face even more barriers to accessing communication due to systemic inequity in disability services. This is a question of human rights and dignity. I am hoping you will follow our campaign, by following I-ASC on social media. I will post more about it in the coming months.
The Disability Aware Healthcare is also important. This focuses on reaching out to healthcare professionals to educate them about speller needs. This includes our modes of communication and our regulation issues.
Check out our webpage at the link. And here are hashtags we are using for these campaigns:
I am so grateful to be part of this dynamic group of spellers! I have made amazing friends through this group. And that includes our fantastic allies! If you are a speller over 18, or interested in being an ally, please join us!
It is almost a month and a half later than we aimed for, but here is the latest issue of Leo In Bloom magazine! We are always so thrilled to share the words of nonspeakers around the world. The theme for this issue is connection.
I am including sneak peeks of our pieces here. Please go to the website to read them in full. We will post more this week!
I love doing this with my co-editor and wise friend Nick Pentzell. He is a precious figure in my community, and I look up to him so much. Please enjoy these previews, and check out the whole issue at leoinbloom.com
I am so fresh after the first good night of sleep in a while! It makes a difference.
This weekend, I was overwhelmed by energy. It was so exhausting. And it looked happy at times, but even that can be dysregulating. One thing that helps is being by the ocean. I was lucky to do that on both days. Tara brought me to the beach on Saturday, and after a quick dip in the chilly water, I roamed along the water’s edge, stimming and thinking. That was so freeing, but I still bubbled over with intense energy. Tara kept a close eye on me, but gave me space to feel on my own.
On Sunday, I joined my surf club Waves 4 All for the monthly surf. Wow, I was excited to be there! Too excited, because once I got my wetsuit on, I sprinted full speed into the water and kept going until I was chest deep, away from my coaches because my energy took over and I didn’t think about where I was going. The waves felt so powerful, and I felt my energy resonate with them. But I didn’t pay attention to the current pulling me north, nor to Tara yelling my name from shore. She was not prepared to go in the water, since it is better for her to stay on land with my letterboard while I surf so I can run to her in between waves and spell feedback for my coaches. She got the in-water volunteers to get my attention and guide me in. I know she would have leapt in if needed!
My coach Todd was great about it. He had been concerned, but not panicked, and expressed pride that I was comfortable in the water, but was firm in telling me to be more mindful. I get it. It is not all under my control, but it is important for me to learn these things for myself. I always push for more independence in these things. Tara was not expecting me to do this because I never have before, but now she knows I am able to do it, which necessitates a new level of supervision. She and my support team need to help me stay safe, but I also want to do what I can to keep myself safe. It is a balance of dignity of risk and safety.
I am proud that I can brave the waves on my own. But I needed to learn that it is not a good idea to actually do it on my own. My body just doesn’t have enough control to do it safely.
I am not trying to alarm anyone. I wasn’t in danger, just in a concerning situation. There were plenty of people to help me out. Tara shouldn’t be blamed, because I seriously sprinted away and she had no reason to suspect that I would go so far.
I still had fun surfing and seeing friends on a gorgeous sunny day! And I appreciate the chance to learn lessons like this.
Danny With Words 