Ms. DeGeneres, @TheEllenShow
I have been a fan of yours for many years now. I have laughed at your jokes, cried during your TV show when you reunited people, and was amazed by the talented people whom you have picked to play music, sing, and dance on your daytime talk show. However, this last week, I saw something on a show that you produce that did not seem to match what I have seen and heard to be true about you and your beliefs. On “One Big Happy” there was a joke about the female lead taking folic acid because she didn’t what a stupid baby, like a stupid, stupid baby. I was shocked that this was something that was okay to joke about, because it is not okay. Actually to be perfectly honest, it went way over the line.
Folic acid is a vitamin/supplement that women who want to get pregnant or whom are pregnant are encouraged to take in hopes that it will prevent neural tube defects, primarily Spina Bifida (SB for short). SB is a birth defect that is developed within the first 28 days of conception, which honestly most women do not know at that time that they are pregnant. The FDA and the SBA have promoted folic acid in hopes to reduce the number of babies born with SB. SB is one of the most common birth defects and cannot be cured though however it can be managed with proper medical care, early diagnosis and continued medical intervention including but not limited to surgical intervention to extend the life of the individual and treat the individual’s medical conditions that are associated with the diagnosis of SB.
SB is not a death sentence, though severe cases, depending on the type of SB and the locations that it effects related to the spine and the nerves, could result in long-term continuous care. However, individuals with SB are not stupid!! Most individuals whom are diagnosed with SB function at average to above average intellectually. Telling jokes about folic acid when it has been used as a preventative supplement directly connected with SB is absolutely asinine. So many disabilities have been in the spot light, including but not limited to MS, CP, Autism, and even Downs Syndrome and has been a forepaw to joke about these medical diagnosis. However, it seems okay to the writers of this show and to you as a producer to joke about folic acid. This is very disturbing and upsetting to the SB community as a whole.
I am a 34 year old woman, mother, wife, daughter, sister, college graduate, and professional who just happens to have SB. I have excelled at everything that I have done and continue to do so, even when odds are stacked against me and sometimes have to adapt to make things easier for me to accomplish in a world that frowns upon or outcast individuals that are labeled disabled. I have always put my abilities before my disability as have many of my friends. I do not let SB define me, nor will I ever let it define me because I am so much more than a birth defect.
SB happens more than most, including the medical community, are willing to admit. We need more activist telling the facts about this birth defect rather than comedians who think it is a great way to joke about a condition that they seem to know absolutely nothing about and seem not to be willing to learn so they could help a community of individuals that deserve the same respect that others have obtained from their communities and the nation. Not only do we have to fight every day for respect and understanding, as we age we have to fight for adequate health care to continue into adulthood. This is something I myself have been fighting since my early twenties. Unfortunately, the best doctors who treat SB are pediatric doctors and release us at the age of 18 or if we are lucky at the age of 21. This leaves us adults without treatments we deserve and need desperately to continue living a happy fulfilled life with our family and friends.
I would have expected more from an individual, like yourself, whom advocates for many different causes. I would love to believe that your writers and you yourself, did not mean for this joke to have a negative effect on a community of individuals who did not choose to have SB but have learned to embrace it and excel at whatever they decided to do throughout their lifetime. We need advocates whom are willing to put SB in the limelight using factual data to help build more awareness throughout this nation and in the medical community. With all the negative comments and jokes that Hollywood has produced regarding SB, I think it is time for someone to take a stand and offer us an apology. I would encourage you, Ellen, someone who I see as a strong female role model for many, to take a stand for us. I also would suggest that maybe on your talk show, you could highlight those with SB whom have accomplished great things and possibly bring some of us on your show to speak with you and give you the facts about this birth defect that affects many individuals. I know of two other people who would be willing, along with myself, who would love to meet with you and SB. The three of us are trying very hard to change the SB community for the better by making it an easier world for the new generation of children that are being born with SB and making changes in the way the medical community views the diagnosis.
Social media has had some damaging effects on the SB community and it’s very sad to see that individuals in their 20’s who don’t believe independence is possible and continue to live in a world of negativity and depression. We have encountered this all too often and find that these young people are concentrating more on their disability rather than their ability to be great leaders and advocated in their communities and more importantly, in their lives, to better educate expected mothers and grow to be better more productive members of society. I do not want that kind of lifestyle affecting the younger generations. Some of us have worked so hard to push the boundaries of this stigma associated with SB.
I encourage you, Ellen, to really take this to heart and consider what I have asked of you. You know what is like hiding something for many years with the fear of repercussions from people around you, your fans, and possibly your career. However, we respect you even more for being who you truly are, which is, an amazing woman who overcomes any obstacle that you have encountered with determination and laughter. I truly wish you the best and please continue to dance for those of us who are not able to due to our disabilities!!!! Best wishes, always to you, your family, and your success!!!
With sincerity!!
Christina Pepper
Christina Shuffle 