Building Interdependence at Rooted in Advocacy 2019

Posted by The Arc of North Carolina

Author: Bryan Dooley

On March 29, 2019, The Arc of North Carolina hosted its annual Rooted in Advocacy conference in Winston-Salem. This year, the conference was designed to be fully inclusive for The Arc staff and board, the vast chapter network, parents, siblings, self-advocates, and professionals who interact with people with I/DD, instead of separate conferences on consecutive days..  The conference began with a showing of a documentary called Deej, an award-winning documentary chronicling the high school and college years of a non-speaking poet and advocate with autism, DJ Savarese, as he makes his way from public high school to Oberlin College.   As I watched the film, I couldn’t help noticing the commonalities of life with a developmental disability. Although DJ is non-speaking, I could relate to many of his experiences. He uses writing to advocate and communicate his needs and wants. He also talked about using his writing to free his people, which is the same type of language that I used to use.  
The next morning, DJ Savarese gave the opening keynote speech. I’m not sure that I’ve ever seen an opportunity for a non-speaking person with autism to give a keynote address at a statewide conference before in North Carolina; as a self-advocate, it was incredible to have that validation that our voices are valued.  The biggest take-away for the audience was definitely DJ’s insistence that people stop using the term “non-verbal” to describe people like him; after all, he says, he has plenty of words.  He just uses them in alternative ways (writing, vocalizations, and with assistive communication).  He is non-speaking, but not at all non-verbal.  
Suzanne Hening, mother to self-advocate and first-time conference attendee Sam Hening, reflected on the presentation, and her general impression of the Rooted in Advocacy conference.  
“The first keynote speaker I really enjoyed and one thing I got out of his talk was about that we could say that Sam lives interdependently rather than using the term independently,” said Suzanne.  “Our general first impression was that the event was very well-organized and there was a lot of positive energy. “
After the keynote speech, a diverse selection of breakout sessions was offered. Many attendees were inspired by things they learned and planned to take back to their communities. 
Latrice Towns-Miller, EC Program Specialist for Union County Public Schools, discussed her experience in the breakout sessions. “I attended the presentation on vision and vision therapy, Fetal Alcohol Spectrum Disorders and how alcohol-exposed pregnancies are impacting us, and the presentation about all behavior being a form of communication,” said Towns-Miller.
She continued: “I plan on sharing all the information that I gathered from these sessions with my team. I also plan on sharing the All Behavior is Communication information with a school team that is having difficulties with a student with low communication and difficult behaviors. I also want to meet with our school’s system’s vision specialist to try to gather a game plan on how to identify students with less common visual difficulties early.”
Jasmine Calhoun, a self-advocate who attended Rooted in Advocacy through The Arc of North Carolina’s regional office in Asheville, agrees that it was a great conference this year. “I learned a lot,” said Calhoun. “I attended sessions about supported living and supported employment. I will share the information with other self-advocates that I learned from these sessions. The supported living session made me think about and feel like I could live on my own with some support in the future. I really enjoyed the dinner and dance on Friday night.”
As a leader in the disability community, I get invited to many different conferences. I find that the most empowering aspect of conferences is not the formal activities, but in the community that we create during the informal times, like lunch. The Arc of North Carolina’s conference was no exception. I saw an amazing cross-section of leaders in local, state, and national disability rights movements, all in the same location. In a way, it reminded me of a family reunion, because these were people who I see on the internet, but I rarely get to see in person. So, it was moving to see everybody. 
The conference closed with an emotional and impassioned presentation from Natalie Weaver, founder of Sophia’s Voice and co-founder of Advocates for Medically Fragile Kids.  Natalie’s oldest daughter, Sophia, inspired her passion for advocacy. For over a decade, she has advocated for her daughter who was born with facial, hand and foot deformities and numerous disabilities. In 2016, Natalie became involved in public advocacy when she and a small group of concerned mothers stopped North Carolina from reducing life-saving CAP-C services for Sophia. 
My first impression of Natalie and her work is that it is amazing how a small group of mothers can form an organization in such a short time and gather allies to prevent the state from cutting necessary services to keep her daughter alive.  It’s also neat to see her grow from a local advocate to someone who was featured nationally on CNN and The Today Show.  She reminds all of us that “it is so important for us to advocate, tell our stories and share our truth, because it’s the only way things will change.”  When asked what it was like to be the closing keynote speaker, she replied: “Any opportunity to share my journey with others is an honor.  To go from being a hidden person three years ago to speaking in front of others to encourage them to open up and share is still unbelievable to me.  My favorite part was to be able to talk to self-advocates afterwards to discuss their work and what’s important to them.”
Duncan Reid, Regional Director for The Arc of North Carolina’s Asheville region, offered a reflection on the closing keynote, and the conference in general. “The closing keynote was especially moving.  Who could have ever imagined that a person/family would be subjected to hate speech?  No words.  But the story was also very inspiring that one person standing up for what is right and decent could have an impact.”  
Duncan points out the growth of the Rooted in Advocacy conference and encourages others to attend next year.  “I’ve been to many a conference for The Arc over the years, and this was one of the best in recent memory,” said Reid.  “I will also encourage others to come. As a professional, I found it a great place to network with other professionals.”
This year is the third year that I’ve been involved in the Rooted in Advocacy conference. Each year that I attend, it becomes more and more inclusive with everyone that’s involved in advocacy. It was exciting to have keynote speakers that were so deeply involved and passionate about advocacy for people with disabilities. I loved that there were so many breakout sessions that spoke directly to issues that affect my daily life. 
The conference is a great place for people with disabilities, family members, and professionals to come together and learn. I can’t wait to see what The Arc of North Carolina has in store for the 2020 Rooted in Advocacy conference.