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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.

4 Responses to “Are Civility and Mature Behavior Really Too Much to Expect?”

  1. All of us at the National Foundation for Ectodermal Dysplasias share your dismay at the comments made by Shaquille O’Neal. Thank you for speaking out and taking a stand against bullying. The NFED has reached out to Mr. O’Neal and invited him to join us in turning this negative to a positive. Beauty is diverse. Let us show you. http://nfed.org/index.php/news_events/page/open-letter-to-mr.-shaquille-oneal

  2. Tai Spargo says:

    Thank you Jodi for sharing NFED’s response and everything you guys do as an organization!

  3. Shelley Hier says:

    Why do we expect those in the public eye to be role models, when so very often we have been proven wrong? We need to be the role models that THEY should be emulating! Thank you for sharing the story! I wish the best to this young man, and think that he must be the best role model for keeping his cool and showing his respect for himself.

  4. Tai Spargo says:

    Glad Shaquille O’Neal saw the light and apologized. It’s never too late to learn. Coincidentally, a great story just came out about the National Foundation for Ectodermal Dysplasias and a possible new treatment- http://bit.ly/1jhroUi.

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