Monday, June 24, 2013

Points to Ponder About Genetic Testing and Disability


I saw this thought-provoking suspense movie a while back titled GATTACA starring Ethan Hawke and Uma Thurman with Jude Law and Gore Vidal in supporting roles.

The background was “a not so distant future, when DNA will play the major role in determining social class. At birth, following the result of a comprehensive genetic testing, a person’s future health is determined on a scale of 1-10.
10 for the human with a superior genetic profile. 1 for – your guess is as good as mine.
To escape producing doomed offspring, parents succumbed to the use of IVF and genetic selection to conceive ‘valid’ children with superior genetic profiles.
In this environ is born the main star Vincent who was conceived naturally by loving parents. A high probability to develop shortsightedness/mental disorders, have a short life span, ascribed him a low genetic profile which translated to a future doing menial labour.
But his dream was to be an astronaut. A job reserved for the best.

The only way he can achieve this dream is to become a "borrowed ladder", a person who impersonates a "valid". Vincent "buys" the identity of Jerome,  a former swimming star with a genetic profile “second to none", who had been injured in a car accident, leaving him paralyzed from the waist down.
He used Jerome’s "valid" DNA in blood, hair, tissue, and urine samples to pass screening, gained acceptance into the Gattaca Aerospace Corporation, the most prestigious spaceflight conglomerate, and went on to become Gattaca's top celestial navigator.

After watching this movie, I questioned again my ideas of how genetic testing should be used and became fearful of how society is already directly/indirectly supporting these discriminating ideals of “perfect and not perfect” now.

Points to ponder

It is important to test, important to know
Genetic testing is important to enable us predict/diagnose/manage a potential disease. WHAT IT IS NOT is a means to label and discriminate. Efforts to promote healthy populations need not lead to a systematic segregation/second class treatment/ of the members of our society who do not meet our typical understanding of health.

Genetic testing does not solve health problems
In the future, technology might be able to detect a predisposition to diabetes, forms of depression, Alzheimer disease, heart disease, arthritis, or back (problems which are more prevalent in the population than many of the currently detectable conditions)- What will we do then?
Shall we be picking and choosing spouses – “I don’t want a partner with a potential for diabetes. Too much stress to cook unripe plantain porridge daily” etc etc.
I would wish that we focus our energies on finding lasting treatment and making life comfortable for others.

The life/future of a person with a chronic illness or disability is not defined by their condition
Most people with conditions such as spina bifida, achondroplasia, Down syndrome, and many other mobility and sensory impairments perceive themselves as healthy, not sick, and describe their conditions as givens of their lives – the equipment with which they meet the world.
The same is true for people with chronic conditions such as cystic fibrosis, diabetes, hemophilia, sickle cell, and muscular dystrophy. These conditions include intermittent flare-ups requiring medical care and adjustments in daily living, but they do not render the person as unhealthy as most of the public-and members of the health profession-imagine.
People with disabilities are thinking about a traffic jam, boyfriends, a disagreement with a friend, which movie to attend, or which team will win the World Cup-not just about their diagnosis.

External factors affect people with disabilities more than the condition itself
We wrongly assume that gaps in education, unemployment, poverty, isolation or low social status are inevitable consequences of disability because the impairment prevents study or limits work. But when you take a look around Nigeria for instance – characteristics of buildings (no disability access in schools, workplaces), transport systems, road systems (traffic lights, tarred roads), means of communication, you realize that societal arrangements preclude them.
The parents of this little boy protested about the unfairness of this class picture.
I remember this Entrepreneur and bank customer of mine who used to carry out most of his transactions over the phone with me. One day he decided to visit the bank and I was quite curious to see him for the first time. His jeep drove up, and a wheelchair was brought out by the chauffeur. But alas, the bank security door was not wide enough to allow the wheelchair in unless it was folded. Rather than face the indignity of being “carried in”, my manager and I had to come meet him in the car and have the business meeting there. He kept his business with the bank but never came back. I don’t blame him.

Life with disability is worthwhile
Several prominent bioethicists claim (and many of us agree) that to knowingly bring into the world a child who will live with an impairment
(whether it be a "withered arm," cystic fibrosis, deafness, or Down syndrome) is unfair to the child because it deprives the child of the "right to an open future" by limiting some options.
Yet, there is abundant evidence that people with disabilities do not merely take from others but they contribute as well-to families, to friends, to the economy. They contribute neither in spite of nor because of their disabilities, but because along with their disabilities come other characteristics of personality, intelligence, talent, and humanity that render them full members of the community.
Oscar Pistorious? Jack Carroll (the second runner up of Britain’s got talent 2013), Paralympic athletes, Andrea (winner of the Voice UK), Franklin Roosevelt anyone??!! and lots of other politicians.

For Prospective Parents
This was written by a Disability activist Adrienne Asch - In order to imagine bringing a child with a disability into the world even when abortion is possible, prospective parents must be able to imagine saying to a child, "I wanted you enough and believed enough in who you could be that I felt you could have a life you would appreciate even with the difficulties your disability would bring”.
Instead of thinking of avoiding the life itself, why not think of how the expected problems could be reduced or avoided.

Burden vs Benefits of raising a child with disability
If we assume that there are "extra burdens" associated with certain aspects of raising children with disabilities, consider the "extra burdens" associated with raising children with “extraordinary aptitude” for athletics, art, music, or mathematics.
In a book on gifted children Ellen Winner writes, “All the family's energy becomes focused on this child’s development in two ways: either one or both parents spend a great deal of time stimulating and teaching the child themselves, or parents make sacrifices so that the child gets high-level training from the best available teachers. 

They perceive that all the extra work and rearrangement associated with raising such children will provide what people seek in parenthood: the opportunity to give ourselves to a new being who starts out with the best we can give, who will enrich us, gladden others, contribute to the world, and make us proud”.
Can we think the same of a child with a disability, that the benefits of raising this child outweighs the ‘burdens’? Yes, we can.                                                                                                                                                  

Closeness brings Understanding
The closer people are to someone with genetic disease the more unacceptable it is to evaluate the worth of the person’s existence solely in terms of their genetic disease.
I will even broaden that. The more you see those with disabilities, the more you accept that they have the right to share the public space.
Personally, it was an eye opener to me when I first came to UK. Saw all modes of people with disability going about their personal business. I was the one gawking. 
Coming from a society where disability is heard not seen, pitied not accepted, it took me awhile to understand. To learn not to always rush in to open a door, carry an extra bag - cause the person wants her/his independence.
So make an effort today. Reach out to that disabled person in your place of work, the crippled asking for money in front of Mr. Biggs…not out of pity please. But because they are persons of worth. Say “hello, how are you?”. Look them in the eye as you say it and mean it.

What do you think? What are we doing well, what can we improve about disability in our society?


14 comments:

  1. The most annoying thing in Nigeria is that little provision is made for people who are physically challenged. Right from the international airport...to the boutiques with long staircases without lifts, to offices without doors that allow wheelchairs...etc. Nothing is ever built with those physically challenged in mind. Very annoying


    This is a very good post... I appreciate the education

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    1. You spoke my mind. Even hospitals! Even regular doors are sometimes too narrow to get through.

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  2. Thank you for the education, this is a great post...sadly Nigeria has no infrastructure for physically challenged people. A friend of mine who had an accident last year was forced to stay indoor all thru because there are no infrastructures to aid her moving around while in clutches...I hope we get there someday.

    I will send you a mail with the book titles and would be glad if you have them...thank you.

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    1. That must have been awful for your friend. Hope she's ok now.

      I hope we get there too.

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  3. Thank you for this post, Ginger.

    In Nigeria, being physically challenged is a death sentence, psychologically. No Ramps, No special walk ways, No nothing! Even in some hospitals, it's appalling!

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    1. It is. More scary is how everyone is quiet about it. There are so many important bills/policies that can be passed to improve health and life. yet our politicians refuse to think beyond their daily bread.

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  4. Great post. Gattaca is one of those movies that get you thinking, one of Atala's favorites actually. Social attitudes and support as well as physical infrastructure are very important when it comes to disabilities be they physical or mental.

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    1. Glad to hear of another GATTACA fan. I loved that movie. not just the great acting but that it leaves more questions than answers sort of...

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  5. Well said, Ginger! Because of this I am buying Gattaca to keep now.

    I do feel it is my duty to point out the unripe plantain myth as it were. Since the end product of all carb is sugar, cooking unripe plantain for a diabetic is STILL as dangerous as them quaffing the same amount of ripe plantain.

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    1. Thanks for the food education Nwunye. I honestly didnt know!!! Na so i for kill somebody lol

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  6. If i start, i'll probably not stop. Till date, the disability bill has not been passed into law after about 5 attempts so yea, people will keep erecting new buildings with no thought for ramps and accessibility and this will go on for a while. Disheartening.

    In the meantime, i think we can change our attitudes because most times, the attitude to people with disability is the real disability not the impairment they live with.

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    1. Thanks for that info about the disability bill Toin. I didnt get to check up on what laws/bills have been passed in Nigeria. The senate has only passed 34 out of 331 bills in 3years. What do we expect?

      Change of attitude indeed is #1.

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  7. I'll probably send you an email :)

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  8. Very incisive piece Ginger. Correct food for thought

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