Dear Friends,
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.
Danny With Words 