Fixing vs Healing
I’ve been wrestling with my feelings for days and I’m not sure I’m any closer to sorting the feelings out or finding words to express myself.
We are spiritual beings having a human experience. The oneness of our spirituality is often poorly expressed through our humanity and so issues like justice, oppression and inequities often occupy our thoughts. I, like others, have spent a fair amount of time discovering and living into my inner, spiritual wholeness. Embracing the idea that no matter how my humanity appears; no matter how the material world reacts to, judges or discounts my humanity; there is within me an eternal wholeness that cannot be diminished or destroyed.
Do you love yourself? This soulful question is hard enough for people who generally fit the ideal mold held out as leading to success in our world. Most people question their body shape, hair texture, speech, and a hundred other factors and fear they still don’t measure up. For people with disabilities (and other oppressed groups), this is an even more difficult question to answer in the face of ample evidence the world does not love me, value me nor support me being the way I am.
While I have been focused on my wholeness, it seems the material world has been focused on fixing a brokenness. Last week, the FDA, not wholly consumed with COVID, approved a BioMarin drug to treat achondroplasia, the most common type of dwarfism. Intended to enhance growth in a condition noted for short stature, it may not be the panacea you hope it is at first glance. While it may increase height, individuals will not be tall, nor will it erase features seen in the hands, face, body proportions and feet of individuals with achondroplasia. It may allow them to reach things but it may not put the treated individuals out of the reach of ridicule for how they look. There does not seem to be sufficient longitudinal evidence (either here or in Europe) to see if it will really improve long term joint pain and co-morbidities (including apnea). BioMarin’s Chief Commercial Officer projects sales of this drug will eclipse its former best seller, at $544 Million. Given an annual cost of $320,000 and the inequities inherent in our healthcare system, we know there will be disparities in how the drug is dispensed based on race and economics. BioMarin sought input on the drug, primarily from unaffected parents of children with achondroplasia. This sets up a potential dynamic similar to what happened years ago with cochlear implants in the deaf community. Deaf parents were suddenly “neglectful” or “selfish” if they saw deafness as an identity, a life worth living and declined to subject their children to the implant. Dwarf parents may now face a similar discussion if they see themselves as whole even with achondroplasia and decline the drug for their eligible children.
Of course, there are people who don’t want to be the way they are. People who don’t want to be dwarf, or deaf, or gay, or transgender or neurodivergent or different. “It would be nice to be like others,” they fantasize. “It would be nice to be out of pain and suffering. To live without fear in a world that supports who I am.” I am concerned that if we keep working to “fix” people based on the standards of oppression, we skip the work we could be doing to improve quality of life, eliminate barriers and oppressive social structures, and move to a place in consciousness of embracing all differences.
This drug is given around the age of 5-12 to children with active growth plates so decisions are driven by parents. The challenge is always unaffected parents choosing an identity or understanding an identity not their own. These children have a spiritual wholeness within them, no matter what their parents decide. Should drugs be used to eliminate elements of difference, elements of human identity that others devalue? Is the primary goal health or fitting in? What happens to the way society views those with dwarfism who aren’t helped by this drug or who can’t access the drug? Can we believe in wholeness and still seek to alter who we are? I affirmed my wholeness daily during chemotherapy. Healing, for me is what happens when I am grounded in wholeness. I guess I didn’t view my treatment with drugs as fixing something broken as much as I saw it as releasing something foreign. And maybe that is just semantics I want to promote my view. I do believe in our wholeness, we are continually seeking to be better and better human expressions of the Light we are. I will work to release judgement of those who choose the drug for their children. I will work to release judgement of those who long to be different than they are. I can’t claim any superiority around the wholeness I see within each of us. Nor do I deny that it is possible for those choosing the drug to also see wholeness and not brokenness.
Still, I wonder about what happens when we set about eliminating differences in each other—in our humanity. BioMarin has decided tall(er) is a better quality than short. We know that eugenics, as a movement even in this country, sought to eliminate any “imperfection” early on by allowing infants to die without life sustaining treatment. I was put in the back of the nursery to die in 1955 by concerned medical professionals, and Baby Doe cases in the early 80’s allowed parents and medical teams to withhold treatment until legislation protecting the rights of newborns was enacted. We also allowed involuntarily sterilizing primarily developmentally delayed adults (some states allowed this up until 1977). The medical community was a part of how this all unfolded. I was in my early twenties the first time a high school biology teacher confronted me in a workshop I was doing with a genetic counselor. The workshop was about teaching the science of genetic inheritance in humans with compassion and not viewing “conditions” as oddities. We hoped to avoid people teaching in a way that made affected individuals in the text book somehow less than human. This gentleman said, “It makes little sense to discuss how the condition might be inherited going forward when people like you shouldn’t be allowed to reproduce.” Well, there it was, out in the open. Our target audience was resistant to the message. I think I simply said no one needed a permit to have children. I’m sure I had a sarcastic ending in my head about maybe not allowing narrow-minded people to reproduce. I wonder if we have changed?
I am certainly not “anti-medicine”. I am vaccinated and booster-ed. I go to the doctor for support in the ways I can maintain this little body temple. I listen to my body. I am still thriving after years of activity and a dance with cancer. I pray everyone has access to the tools of technology and medicine which allow them to live their best lives. I do not believe my activity, my productivity, the taxes I pay, the children I had the honor to raise, nor the education I got, makes me any more valuable or better than anyone else. As this Thanksgiving approaches, I am grateful for the ability to love myself; to see the wholeness I am; to see wholeness in others; and to continue to work for an equitable and just world for all. If enough people see wholeness and equality in everyone, maybe we can redirect our creative energies in a direction to provide healthcare, education, housing, transportation, meaningful work and basic needs for all of us just as we are.