December 6, 2016
by Mark Dunning
My name is Mark Dunning. I'm the Chairman of the Usher Syndrome Coalition, and I have the honor of speaking for the Usher Syndrome Community. We’ve been thinking about you a lot lately. We’re worried about you but we think we can help. You see, a lot of the problems that afflict America today afflict the Usher syndrome community. It’s just that here, in our community, those effects are amplified. We even share an acronym; U.S.
Usher syndrome is the most common form of combined deafness and blindness. It’s a genetic disorder and it impacts maybe 400,000 people worldwide. You may read those last sentences and assume we don’t have anything in common. But you would be wrong. I know. You see, I personally don’t have Usher syndrome but I live with it every day. My daughter has it and so do many, many of my friends. I’m also an American citizen so I live with your problems, too. And there are a lot of similarities.
We, like you, are an incredibly diverse community. Usher syndrome impacts all faiths. Usher syndrome impacts all ethnicities. Usher syndrome is just as likely to affect a family in Louisiana as it is a family in New York. We’re old and young. We’re male and female. We’re red and blue.
Just like you.
And like you, we often feel frustrated. We’re deaf and slowly losing our vision to a disease with no cure. It’s hard to fully describe the frustration of living in a body that is failing you or, in my case, watching powerlessly while the vision of a loved one deteriorates.
Like you, we worry about jobs. People with Usher syndrome routinely lose their jobs as their vision wanes, regardless of their experience or their work performance. And whatever the unemployment rate is in your community, ours is worse. The unemployment rate is over 80% among those with combined vision and hearing loss.
We understand the passion of disaffection. We know what it is like to be angry at things that feel beyond your control. And we understand shock better than anyone. Heck, we were once told, after already having a diagnosis of hearing loss, that we were also losing our vision. Try sleeping after that.
So here we are, a group of diverse people, angry, frustrated, worried, and shocked. Yet, despite all of that, we here in the Usher Syndrome Community have NEVER been more united. What unites us is that, just like you, we love our families and we are willing to fight for their futures. We in this community are more different than we are the same, but we are alike in one very important way. We recognize that we are stronger together and have chosen to rally around those few things that we share. Together we turned our greatest weakness, our disease, in to our greatest strength.
Maybe that’s where we can help.
We know how to survive the most shocking, dramatic, life changing news. We know how to come together in the most emotionally charged and divisive circumstances. We know how to build a supportive, caring, vibrant community out of a wildly diverse group filled with people of different ethnicities, religions, genders, ages, languages, political affiliations, and social interests. We know how to take what ails you and use it to empower you.
The key is to listen, even when you are deaf, to see even when you are blind, to tap, tap, tap your way along when you are lost until you find something solid and familiar. To never stop believing in a better future.
But until you find your footing, America, just follow us, the deaf and the blind. We’ll show you the way.