Courageous Love: Crystal Emery

My sister-friend and colleague, Crystal Emery never fails to remind me that it is up to us – each of us — to dismantle notions and systems of oppression, of divisiveness, of inequity, of injustice. Crystal is African-American. We often banter about differences between my Caribbean culture and hers. She is an accomplished author, film director/ producer, and activist who lives in New Haven, Connecticut.

Crystal’s life and legacy give voice to her commitment to courageous love. Her documentary, “The Deadliest Disease in America” is produced by her nonprofit advocacy organization, URU The Right to Be, Inc. As executive director, Crystal has created a thriving non-profit organization that utilizes the arts to foster communication and understanding among diverse racial, social and economic groups about issues that affect urban communities. URU\\\’s focus includes race relations, HIV, breast cancer education, disability rights and world ecology.

This film is in many ways an autobiography of Crystal’s experiences as an African-American encountering racism while navigating the healthcare system. “The ultimate goal of this film is to illuminate disparate treatment based on racial, economic and ethnic differences in order to help achieve a healthcare system that serves all Americans equally,” explains the filmmaker.

Crystal is a beautiful woman whose arms and legs are paralyzed as a result of her disease. She speaks of difficulties she has had all the way from getting a diagnosis of Charcot-Marie-Tooth disease, a form of Muscular Dystrophy, to losing her benefits for receiving physiotherapy. We follow along her heroic efforts to reinstate her physiotherapy… and then after the benefits were reinstated we see how she ran out of money and no longer has health insurance because she and her spouse simply cannot afford it. Michael cannot afford to give up the time he spends taking care of Crystal and their adopted special needs adult child Shawn, who functions at the level of a twelve year old.

Crystal hopes that sharing these stories will stimulate conversations that move individuals to action. Interesting…. I cannot help but notice that Crystal’s audience rarely reconciles the facts that the “poor” woman using the wheelchair is the “brilliant” producer. Neither can Crystal…. How strange is that for one who embodies courageous love.