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Apr. 28, 2014

TOPIC: Featured News, Patients & Members

Are Civility and Mature Behavior Really Too Much to Expect?

Posted by admin

Today, along with many others, I was horrified to learn that celebrities, including Shaquille O’Neal, were mocking a man living with ectodermal dysplasia on their social media pages. Read the story

It is upsetting to see individuals who are meant to be role models in our society showing childish behavior that seems to imply to others that it is okay to mock people based on how they look. It is not okay; bullying never is. The rare disease community is here to stand up to bullies and tell them that this is not acceptable.

I wish that we could dismiss this as a truly isolated incident by a few ignorant individuals, but the fact that it happens at all is a problem and we know that individuals in our community face judgment and adversity far too often.  Yes, this points to the need for more awareness for rare diseases and the challenges in our community, but it also points to the need for more compassion in our society.

I am reminded of Lizzie Velasquez’s comments from her TEDxAustinWomen talk in December of 2013 after she received comments on her appearance. I only hope that her resilience and positive outlook can be an inspiration to anyone who is subjected to this type of inexplicable cruelty.