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Here’s What We Said.
Listening to Self-Advocates: Relate, Respond, and Amplify
(Marcus parts in bold)
Ladies and Gentlemen, I’m Marcus Wright Sikora.
I wrote a book called Black Day: The Monster Rock Band.
I’m a storyteller, an actor, and a singer.
I’m glad to be here with people from around the world
talking about Down Syndrome.
New York City is my favorite.
This is my mom, Mardra. She’s a writer, too.
Hello. Thank you for inviting Marcus and me to be here today. It is an honor to present our perspectives with people from around the world. Thank you to Down Syndrome International for bringing these broad humanitarian issues of inclusion and advocacy, into the spotlight, here at the United Nations building.
I think the key is being open to learn from each other. Marcus and I learn together, about our own skills, about advocacy and self-advocacy. We teach each other, we get frustrated, we get silly, we create, we reach out, we panic, we try again. This process is ongoing. We will only stop learning when we stop listening.
The most important place to start any advocacy is by listening to the self-advocates, in whatever way they communicate. It’s our responsibility as allies and caregivers to relate, respond, and amplify this communication. Marcus’ story is one example of how unique this can be. His stories reach people in a very personal way and emphasize our common human obstacles and adventures.
I am so amazed and impressed with all Marcus has learned, wanted, done and continues to strive for since he, quote, finished school. What he wants to do and learn is limitless, our challenge is finding the tools and people to teach and support him. That’s a challenge worth facing.
Part of that challenge for our community is recognizing and listening to all the ways people with disability communicate. When we speak of #Voice in the Ds community, it’s critical to acknowledge that the people we love with Down syndrome, don’t always communicate in just words, right? It is crucial that we, as the parents, siblings, medical and other professionals, pay attention to not only the words but all the ways he or she expresses himself. Behaviors, gestures, technology assisted communication, are all as important as words when it comes to “listening”, in addition to whatever techniques may be personal or unique for the person you know.
As an example, behavior shifts, even in people with Ds who have excellent verbal communication, need to be acknowledged and investigated. This may be the only way the person is “voicing” a safety related or traumatic situation. Quite commonly, a behavior shift is the first, most important clue to a health concern that is hard for a person to articulate. As an example, an increased difficulty in hearing, may be the cause of a normally outgoing child or adult becoming stand-offish and irritable; it could be the reason he or she withdraws because engaging has become too hard without knowing why. Therefore, it is up to those around him or her to recognize and investigate. Our job as parents, caregivers, and advocates is to well document these shifts and acknowledge them as communication.
One personal example from our experience: Marcus has always expressed himself creatively, even before any of us could understand his words. When he was quite little, he often used his hands as puppets and they would jabber on to each other with scattered recognizable words among the mix. There was a time these puppets, with their mimicking, told us via the play, about some concerning moments in his school classroom (nothing horrific, just concerning). Listening to this form of expression allowed us to hear Marcus, and then address these issues at school, with his teacher and principal.
Our first job as allies is to listen to the self-advocates, in whatever way they communicate, then it’s up to us to relate, respond, and amplify.
For us, the opportunity to amplify came about because of Marcus’ knack for storytelling. During the week, Marcus explores his ideas (solo) and he makes notes on characters; we are a house of creatives so we are a house of half- filled notebooks. (How many notebooks do you have in your room? Marcus – A lot) On Sundays, Marcus and I write together. Each weekend, he tells me the story he’s been working on, often in rapid fire, and I furiously transcribe it. When it comes to Marcus and his stories, he uses a very intricate, one-of-a-kind assistive technology: me. And this is how his first book for children, Black Day: The Monster Rock Band, began.
So, Marcus, why is Black Day: The Monster Rock Band important?
“I use my book to teach the kids. The kids are fine.”
What do you want to teach the kids:
“Do what you want.”
Because “kids grow up and have their own kids.”
Is it always easy to do what you want?
“Sometimes it’s hard. It takes a long time.”
Marcus and I also do sessions where we teach people about what makes a good story. When it comes to the art of storytelling, we talk about these key components: (Marcus) Set, Adventure, Conflict, Jokes, and Truth. No matter how long, or short, a story is. Even songs can tell a complete story, if they have these elements.
To use Black Day as an example, what is the set?
What is the adventure?
The boy who wants to be in the band.
What is the conflict – Professor Hammer.
And every good story has a truth, the moral, What is the Truth of Black Day?
Be who you are.
(Pretty great message.)
And also, every good story has a few jokes. Does Black Day have any jokes? Yeah.
The importance of Black Day is that it allowed Marcus, with a very “soft sell” to relate his mantra, his most important truths. Be who you are, and also, Do what you want.
When we talk to the kids and parents, they ask a lot questions. “That’s good.”
People often ask after meeting Marcus: What do you want to do next?
“I am writing Black Day Two. I am writing a musical. I want to go on a date. I want to get married. I want to be in love. I want my own job. I want to help the people.”
Do people help you? “Yes. Everyone needs help.”
Marcus is only one example of how people with Ds use their creativity to share themselves and their truth with the world. In January, the animated short of Black Day showed at the first annual Ethan Saylor Memorial Film Festival which showed films which were written, directed, starred, or featured a person with Ds. It was amazing. Embracing and sharing these stories is such a personal experience for the viewer and empowering to the self-advocates in our community. With these media tools we reach one person at a time in an exponential way.
Remember, you don’t have to be an artist or a moviemaker to amplify the message. We need, as the community, simply need to share and support these ambitious projects to help self-advocates get their #Voice the typical masses. It’s the one time that sharing on your social media channels actually does make a difference. Be ever aware of the media campaigns, movie, book, and music projects of people with Ds around the world.
Many of the advocates in our community are sharing their truth through art, Marcus is just one example, and we so appreciate you’re listening. Thank you.
Marcus: Thank you and Good Night – it’s bar time.