One of the messages the DMRF tries to convey to our members is that your story matters. Your story is important. The courageous act of sharing what it’s like to live with dystonia—on whatever level you are comfortable—can inspire others and change lives.
Because Esther Goodhart was generous enough to share her story, she has brought her experience with dystonia to an exhibit at the Smithsonian’s National Portrait Gallery. A gala on September 16, 2011 will celebrate the launch of the exhibit, entitled "Portraiture Now: Asian American Portraits of Encounter." A portrait of Esther joins scores of others in this special exploration of what it means to be Asian in America.
Many congratulations to Esther for this prestigious achievement! She reminds us all to take pride in who we are and where we come from. By examining those qualities we perceive as differences—in terms of gender, race, ethnicity, (dis)ability—we may ultimately realize more clearly how much we are in fact alike. When you share your story, you inspire others to give voice to their own. You help others understand an experience they do not know firsthand. And your story may suddenly become more powerful than you ever imagined it could be.
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In many ways I find it incredibly frustrating that so many things that make it into the news about dystonia are the treatable forms (DRD), the easier to manage forms(focal dystonia of one hand)or successful DBS. I am afraid that it creates a public impression that dystonia not the severely compromising disease that it is for many of us.
ReplyDeleteI understand that any news is a way to get the dystonia name out there but, again, I am so afraid it misrepresents the disease.
A DMRF response would be appreciated.