This afternoon I helped host the film FIXED: The Science/Fiction of Human Enhancement at the Cincinnati Museum Center as part of the ReelAbilities Film Festival. The film questions commonly held beliefs about disability and normalcy by exploring technologies that promise to change our bodies and minds forever. The story is told primarily through the perspectives of five people with disabilities: a scientist, journalist, disability justice educator, bionics engineer and exoskeleton test pilot. It is a haunting, subtle, urgent story that takes a close look at the implications of emerging human enhancement on the future of humanity.
My brain lit up throughout the documentary, but a few questions that were especially thought provoking got me right in the gut.
Where do we draw the line on using prenatal genetics to choose the perfect child?
One man in the film, Gregor Wolbring, chooses to explain his differences by saying he was born a variation (rather than that he was born with disabilities). He is a biochemist and ability scholar who regularly speaks about the social, ethical, legal, economic, environmental, cultural and governance issues of new sciences and technologies. He has no legs and has hands that look like they work differently than hands we would consider normal, but he regularly refuses help and fancy assistive technologies and devices. He gets around perfectly well, travels, and doesn’t let anything stop him.
About 2/3 of the way through the film, he tackled the question of where we draw the line on using genetics to choose which children get to be born, and which children do not. His perspective was that there appears to be a very clear line when the baby has a condition that would cause significant suffering and death shortly after birth. Most people, he speculated, would be ok with deselecting those babies. However, what about other disabilities? Most people would naturally choose smarter, nicer looking, stronger, healthier babies and would choose to deselect children with any markers for disability.
My first internal response was automatic, emotional, and a little conflicted. If genetic selection were mainstream when I had my daughter, chances are she would have been thrown away. Someone, some scientist in a lab, would have decided her life wasn’t worth living. Disability is scary. People don’t grow up hoping that their child will be born with a disabling condition, so when given a choice, why would they choose it?
The problem is, sometimes things we don’t ask for end up being the greatest privilege of our lives. I’m not saying that parenting a child with a disability is all sunflowers and roses. It can be hard and stressful and exhausting. However, I am saying there are upsides that make the extra challenges well worth the effort. I’m also saying that no one really understands this life until they are intimately involved with a person with a disability. Is it ethical to let people decide to keep a person with a disability from being born when they don’t understand the implications of that choice?
Lily forces us to slow down. She teaches us to appreciate and celebrate every small step. She demonstrates daily that disability is simply an abrasion that makes her work longer and strive harder. If the world didn’t have people to teach us this, would it really be a better place? I don’t think it would. At the same time, though, would I wish her challenges on another child? No.
When to “fix,” and when to celebrate differences?
If someone told me they could fix my daughter’s disability so that she could be like everyone else, would I do it? That’s a hard question. Truthfully it’s hard to distinguish her from her disability, because it is part of what makes her who she is. Would fixing the disability change who she is? What would be the cost? By cost I don’t mean dollars, I mean what do we give up in exchange for “normal” function?
There are a few things I would fix in a heartbeat, but they are likely not the things that first jump into your mind, nor are they the things the film focused on. Many people tend to think of curing the outward signs of disability – making the limbs function better, allowing people who are paralyzed to walk, etc. However, there is a lot of technology out there to help with those aspects of disability already, and I’m not itching to fit Lily with a pair of bionic legs anytime soon because she gets around pretty well in her own way.
The bigger challenges and the ones I would fix are the secondary conditions, and the ones research is less likely to focus on (because we don’t talk about these aspects openly). Bowel and bladder incontinence affects just about every person who has an injury to their spinal cord because the bowel and bladder nerves are located at the very end of the spine (below most injuries). Socially, these challenges are much harder to deal with, and are what cause me sleepless nights. I worry about Kindergarden and beyond. I worry about her being teased if our routine fails and she has accidents at school. I worry about finding time for her to be involved in activities in the evenings when we need at least an hour for our daily bowel routine. I worry about the first time she asks to go on a sleepover. These are the issues that make it hard to find babysitters and why it is nearly impossible for my husband and I to leave our kids for a long weekend.
I do wonder if my being so willing to fix these secondary challenges is a good thing, and I wonder what decision I’d make if “fixing” technologies were actually available and accessible. Mostly, I just want her to be happy, confident, and free to live life the way she chooses.
What do we value?
If we think about all people, everyone has things they are good at (abilities) and things they are not so good at (disabilities). The differences we have are what make us unique, and what make the world an interesting place to live. Some people’s differences are very visible, while others are hidden.
I value equal opportunity and equal access, but I don’t think everyone has to function the same in order for that reality to come true. It would be nice if buildings and homes were more accessible to people with disabilities. It would be wonderful if all of the people with disabilities had the support they needed to thrive instead of too often ending up poor and without necessary resources. It would be fantastic if people actively sought out others with differences.
With all that said, I also value science. The movie tended to display two opposing opinions… those who valued the science and embraced the technologies, and those who shunned it in favor of fixing the social challenges instead. I sit in the gray area between these two opinions. I think these two sides of the coin must work in tandem with each other. We need to advance technology because it’s critically important that we not let ourselves stagnate. However, we need to keep our advancements in check with strong ethics and by using the advancements to also make needed resources available for those who struggle financially.
So… yay science! Yay differences! Yay for the ReelAbilities Film Festival for twisting up my brain, and for helping us drive these critical ethical conversations across our community!
Go watch FIXED and let me know what YOU think.