Avery Roberts is breaking down barriers tackling misconceptions surrounding disability and giving a loud voice to the, often-forgotten, rare disease community.
Avery Roberts lives with Congenital Muscular Dystrophy (CMD) and works in Community Outreach & Engagement for Cure CMD, a rare non-profit in the neuromuscular space whose mission is to advance research toward treatments for the congenital muscular dystrophies and improve the lives of those living with CMD through engagement and support of our community. She strives to support the community by highlighting areas that are often ignored but are at the forefront of the minds of those living with rare neuromuscular conditions. In her free time, living in New York, she is a wearer of many hats — dancer, advocate, foodie, avid traveler, and more.
Transcript
February 28th, Rare Disease Day. I was invited for an exciting opportunity, an opportunity I always thought I would have to work up towards and not start there and work up from there.
When you are a wheelchair user, you are constantly planning more than you think you should. The smallest outing can have the longest to‑do list of all of your adventures. From calling places to confirm accessibility, to doing deep dives and going down rabbit holes online, the planning is extensive on determining the easiest and most efficient way to go about whatever you are doing.
And even post that stress, you often get to your destination and find out that it is actually not accessible when they said they were. I think we all thought Google Street View wouldn't be our best friend, yet here we are, always having it open as one of our many tabs open on our laptops.
I had already met the team before this opportunity, so accessibility needs had never crossed my mind in this instance. All the obstacles I often have to overcome will not be present as I experience this once‑in‑a‑lifetime opportunity.
We arrive at the venue with chills of what is yet to come. Someone from the team comes down to ground level, lets us in, and escorts us to the ninth floor. After the two to three‑elevator rides and ramp encounters, we come to a stop and look up at what is in front of us.
I remember being shocked and my stomach dropping as the team stared at me like nothing was wrong. Two flights of stairs were in front of us, something that I would have never imagined I would have to figure out at that time.
When you are a disabled wheelchair user, there is always an obligation to teach. Whether you like it or not, you realize that if you don't take the many opportunities to teach, there will never be improvement and advancements in society in the future. The sought‑out change will never come for your community.
The bigger challenge in that situation is having the right people who are willing to learn by your side. Although we realize that we will never have a perfect‑world situation, we hope that we are a step in the right direction and starting the conversation, a concept that is well overdue.
What's even more shocking is the solution. The solution that was presented was that stagehands carry my chair up these two flights of stairs, my 400‑pound chair, my legs.
I'll never forget what one guy said to me as he turned to see my jaw half open. “How do you feel about this,” he asked.
While I appreciate him taking the time, aside from everyone else involved, to check in on me, I remember having no words. No words to explain the fact that how much of a risk this was going to put on my body, my chair, our financial needs, the men carrying it up the stairs, the venue, my opportunity to make history for my community.
Following that quick back‑and‑forth between me and that guy, the negotiation and game plan are all a blur. I wouldn't be surprised if my mind is just trying to block it all out. I just remember thinking it's either we risk this or we turn around and completely discard this opportunity.
I was carried out of my chair up the two flights of stairs into a room. I felt as if I was being taken out of my chair both physically and emotionally. I started feeling nauseous as I pictured the men carrying my chair up the flights of stairs. Possibly breaking my chair would mean breaking my time of independence. Imagine losing something as major as your phones with all of your contacts, photos and passwords that we rely on 24/7.
Unlike our relied‑upon phones that are simple to replace, our chairs are much more than just a phone. They enable us to navigate and live in this world. 950 wheelchairs and/or mobility devices get damaged monthly, which is more than 31 per day. It takes at least six months to a year to replace a wheelchair with a repair length of two months even for the smallest fix.
I remember my mom who was with me at the time saying, post the horrid experience, that she couldn't even look. To this day, I can only imagine what that moment felt like for her as a mother.
Luckily, the chair made it out intact from both trips up and down the stairs, but that didn't change the fact that this was an indescribably unbearable situation. It continues to give me even more drive to advocate for inclusion, an absence I know all too well, and even more true awakening to the lack of inclusivity and how to do it right.
What is extremely fitting is that this occurred on Rare Disease Day, the day that the rare disease community is celebrated. The day we spotlight our disabled ancestors who paved the way for us to live the lives we do. All we can hope for in life is to leave the world a better place for those who come after us.
Little by little, every battle we choose to pursue pushes the needle forward no matter how small it is. Rare Disease Day is the day we acknowledge how far we have come and how far we have to go.
Right after our meeting at the venue, we were on our way to Washington D.C. for Rare Disease Week on Capitol Hill, advocating and putting a face to rare disease on the Hill. Sharing our stories and connecting them to public policy matters is crucial to improving the lives of those living with rare diseases.
I remember driving out of NYC that night and looking back at the Empire State Building lit up in the rare disease colors: blue, green, purple, and pink.
A couple of months after that day overcoming this adversity, more than 5K people got to witness the first wheelchair user dance on the great stage of the world‑renowned Radio City Music Hall. I am still so grateful to have been given the opportunity to continue to lead the way in shifting society's perspective on my community within the entertainment industry and beyond. History was made that night and we are still just getting started.
It is extremely unfortunate that when I tell people this story, they are absolutely shocked and sickened, not only from how awful, frustrating and devastating this whole situation sounds, but even just putting themselves in our shoes.
They often remarked, "I have never imagined being in your shoes and experiencing something like this."
Unfortunately, this happens on the daily not only for me but for the 300 million people globally who live with rare diseases. It's fulfilling shattering stereotypes and breaking down barriers, showing society that we're relevant in today's world, navigating a world that was not built for us.