Incorrectly Cracking the Code of Life

After watching NOVA’s 2001 special, “Cracking the Code of Life”, which not only explores the superficial characteristics of DNA but also depicts various bioethical issues, I can’t help but be frustrated with the documentary’s depiction of the Lord family. Each of the twin Lord brothers had a son with Tay Sachs, an awful diagnosis for any parent to hear. Yet, rather than focus on the fact that their sons are still alive against all odds, the struggle that daily they are able to overcome, or the precious time with their sons that they are blessed with, NOVA focuses on the diagnosis as a death sentence. Yes, this genetic disorder is awful. I can’t help but sympathize with the family’s struggles and heartbreak, but what about the blessings? What about the unique bond each parent is able to have with his or her son due to Tay Sachs? I felt like each genetic disorder introduced was viewed as a death sentence, and it was a view that personally offended me due to personal experience.

My niece, Katelyn, has Down’s Syndrome, a genetic disorder that creates intense learning disabilities alongside physical issues. As she grew up, I was heart broken to watch her miss hitting milestones on time that would have been heavily celebrated. She walked late, talked late, and continues as a 5th grader to struggle with reading and basic math. Although Katelyn has and will always struggle, I have watched her have a relatively poised conversation with a stranger. I have attended church services where she bravely sang along to hymns with more heart than I ever will. I have cheered her on as she shot baskets in her basketball tournaments. She typically misses, but my hand eye coordination is zero, so who am I to judge? Katelyn’s drive to continue to live her life to fullest despite her set backs is an inspiration to me to do the same. She is braver, kinder, and funnier than I ever will be. I am blessed to have her as an example to model.

Yes, Tay Sachs is a much more crippling disorder than Katelyn’s, and I have no wish to lessen the hardships of the Lord family. But why was every genetic disorder presented as a nightmare come to life? Isn’t there some merit to be awarded for the different skills sets and personality traits we each have due to our differences? San Jose Mercury News published an interesting article titled, “New Ventures Train High-Functioning Autistic Adults for High-Tech Jobs”, that pointed out how those with Autism bring a lot to the work force in terms of possessing an ability to focus and be highly productive in positions where high analytical skills are needed.

Although the Human Genome Project allowed society to crack DNA’s code, I believe it was originally read incorrectly. I believe we are more than nucleotides linked together into codons and any difference is considered some sort of “typo”. Perhaps, the code is ours to write, and DNA is simply the first line.

-Tori Valadez

For further reading, I’ve attached a link to the San Jose Mercury News article I referenced.

http://www.mercurynews.com/ci_24198031/new-ventures-train-high-functioning-autistic-adults-high

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~ by valadevr on January 12, 2014.

2 Responses to “Incorrectly Cracking the Code of Life”

  1. Tori,
    I think your post was incredibly relevant and provided a necessary alternative take on genetic disorders. As someone studying Special Education, I completely agree with your post. I was so surprised that the attitudes of the Lord families almost reflected hopelessness, even though both of the children fell on the higher-functioning end of the spectrum – a gift not every family is fortunate to have. Because many of my classes place an emphasis on an educator’s role in parent coping as well as providing informational and emotional resources, I would suspect that these resources, at the very least, were made aware to the families. It’s always interesting to see how people react to the opportunities and resources provided to them, and to see the situations in which optimism (or lack there of) wins out.

    -Paige

  2. From a purely cynical point of view, I think the portrayal of the Lord family as you describe it was probably done for sympathy and emotional appeal to the audience–something not necessarily bad. In any case, drawing attention to the disease and how it can affect loving, caring, families can’t be that much of a bad thing.

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