WaPo just had two op-eds with interesting perspectives by people that if one is not a clinician taking care of people with achrondoplasia or stroke survivors, one would not meet or work with every day. One is by Rebecca Cokley, a former exec director of National Council on Disability, who has achrondoplasia, a disease that reduces bone growth, and as she says "the most common form of dwarfism". The other is by Robert Fowler who had an ischemic stroke (blood clot in the brain). These two are different perspectives, and dealing with different issues. What united them in my mind was yet another reminder to me about the world out there. We, I, get so wrapped up in life that I can easily lose track of other people and their stories. People with physical challenges, people with "dis-abilities" often more so than people who just look different, are easily swept under the rug, and locked in a mental closet out of site.
Surviving a stroke is difficult, and Mr. Fowler is wrestling not only with different physical capabilities, but with the shame of asking for help. He didn't intend to be ill or poor but has been dealt a rather bum hand. Not his fault that his parents weren't rich and that he can't afford the best health care that private insurance can buy.
There are good reasons, defensible reasons to promote a culture of "a hand up not a handout", and we are all or should be Clint Eastwood and Chuck Norris and totally self-reliant. Except, of course when we are not. And then it's hard. We are supposed to battle cancer, and be warriors in our own life. The metaphors of illness are of war and battle and fight. When I was very ill, I was just too damn tired of being sick to explore metaphor. And the asking for emotional and psychological help carries a stigma that makes the physical burden even more. Mr. Fowler paints this picture clearly.
Ms. Cokley has had achrondoplasia since birth, and is the third generation in her family. Her concerns are based on the announced breakthrough in gene editing and represent a much more difficult ethical dilemma. She makes the strong point that this announcement came on the anniversary of the ADA (Americans w/ Disabilities Act), a landmark piece of legislation that our current president has yet to understand. Ms. Cokley rightly points out that the language in many of the press releases talks about "unfit" and editing out mutations as "progress" and "remediation". Her language is beautiful in describing the pain that "adult little people" felt when the gene was discovered:
I remember clearly when John Wasmuth discovered fibroblast growth factor receptor 3 in 1994. He was searching for the Down syndrome gene and found us. I remember my mother’s horrified reaction when she heard the news. And I remember watching other adult little people react in fear while average-height parents cheered it as “progress.”
How, if you are an average-height parent, do you explain to children whom you’ve spent years telling are beautiful the way they are, that if you could change them — fix them in a minute — you would?
Her discussion of the community and culture of little people is similar to what my Deaf friends, and my friends who sign, talk about for their life and community. They do not want cochlear implants at birth, they do not want their culture and their society, rich and complex, taken away. I freely admit to struggling with this. Music is so central to my life, how could I trade anything for that? But I try and listen, and Ms. Cokley's story is a good listen.
Her argument against gene-editing has two parts. Firstly, again, she talks about the beauty and the potential and the culture of being different. What is lost if every "imperfection" is corrected? What is lost if we all became perfect. This may seem to us, able-bodied as a reducto ad absurdum. How can we fix everything? But it is not for people within that culture. Her other point is the ugliness of, as she says "society’s fear of the deviant — that boogeyman of imperfection'. It is what people, maybe too old for gene-editing, hear when normal-height (and that word sticks as I type it) say "fixing". In some ways physical differences, that are not skin color, or body size, are things we apply "dis" and "non" and "anomaly" and other words that mean "less" and "ugly".
Ms. Cokley implies that she wants to pass this culture, her culture, on to her children, and does not want "fixes". She talks about how the vague language of the scientists and clinicians who talk about fixing "serious disease" avoids pinpointing what needs to be, or ought to be, or should be, fixed, once the "can be fixed" is done. There are discussions that have no occurred, part of her point. The articles about gene-editing do not talk to the people who might or might not be fixed and edited.
What is a parent to do in this situation? A parent who has not grown up in the culture of little people or Deafness might only want the best for their child. And one issue is that some of these "fixes" might likely have to be done at birth, or in utero, well before the human being who bears the gene can make a decision for him/her/xe self. If teenagers can rage about "why didn't you make me practice the piano" as much as "why did you torture me so much to practice piano", how much more rage will there be over the choice to edit or not edit one's genes? Is gene editing like gender fixing surgery of years gone by, when decisions were made about ambiguous genitalia at birth, something we now rightly regard with horror? Or is it like vaccines, where the ultimate good, to the individual is so strong, we want to mandate it (and yes, I recognize there is societal good to vaccines that may not apply here)?
I am grateful for these voices that make me think, once again, about the problems I do not understand.