Another chemo-brain blog post. Apologize for the style here.
Getting cancer made me angry, not because it’s an annoying interruption to my life but because it adds another layer to the “Was there a way to prevent this?” adoption complexity.
How many of you are attending annual check-ups or such, armed with a list of your great-uncle’s colon cancer and your second-cousin-twice removed bout with kidney stones? You probably think nothing of it, as it’s become such a routine expectation in our medical visits. Let me tell you: Health histories are a privilege. To an adoptee, not knowing the full story of our parentage or family trees is just one loss we experience. But the one that tells the fullest picture of our lives, the one that tells us just what our very own bodies encompass, will almost never be available to us. To me, that’s adoption’s most profound and inhumane loss.
Without a health history, we are simply flesh and bone and fluids from….where? We ask ourselves where we came from, and perhaps obtaining a family tree can help, but adoptees lose the most tangible explanations of what makes us humans. I’d personally would have been happier knowing my medical history rather than knowing why I was given away. Extreme? Maybe. But knowing my genetic health history would have given me control over a life owned by the adoption system.
Am I saying that adoption causes diseases illnesses and problems that are inherited genetically?
— Courtney (@WordyRamblings) November 14, 2019
What can be done to prevent or treat these medical variables? Where can blame be placed–and should we be looking for scapegoats at all? How many parents experience the secondary shame of telling a doctor, “No, I’m sorry–my son’s adopted so we don’t know,” and then didn’t think–or know–to press for additional testing? It’s not necessarily the adoptive parents’ fault; genetic testing is costly and often not covered by insurance unless medically necessary. So who then considers a lack of medical history an acceptable patient status? Well then, are adoption agencies culpable, what with their desire to protect the privacy of the birth parents (if possible) over the child’s future health? Are they clinging to the hope that their outdated yet selectively applied “blank slate” theories will help adoptees get by on a shrug and some hope?
Knowing my genetic health history would have given me control over a life owned by the adoption system.
As you can see, there are some clear ethical and human rights questions at play, which I hope to cover in another post on ICAV’s website soon. For now, I’ll hazard to guess that adoption agencies–and overzealous adoptive parents–go in two directions with regards to their wards’ health: They can either blame “drug-addicted, impoverished mothers and fathers” for their children’s issues and end it there, or passively say “this is all we have, so let’s hope for the best.” Neither mindset considers a child’s right to grow into a healthy adult (because adoptees DO grow up). Both mindsets also set a child up for medical alienation by both parents and community; say, for instance, a child develops a mental disorder or disability, despite being placed with a “loving” adoptive family. All the love in the world won’t prevent genetic expressions or rewrite faulty DNA. Does the child become an ungrateful pariah or just another problem and disappointment? Do the parents speak negatively of the biological parents, while blithely blaming their own grandmothers for their propensity toward diabetes? Some adoptive parents are more proactive:
She’s had some genetic testing for possible identified conditions, but I mean I worry so much I freak anytime she has to take an antibiotic since I have hereditary antibiotic allergies. We just don’t know for her, so I assume the worst. It’s a crappy way for her to have to live.
— Amy (@moogacat) November 14, 2019
Assuming the worst is probably the best case of a life of unknowns, regardless of how uncomfortable or negative that may seem. However, in my case, I’d never assume I’d get breast cancer but I did assume I’m a ticking time bomb waiting to see what new ailments my body chucks at me.
Unfortunately, insurance companies and paychecks don’t feel comfortable investing in worst-case scenarios, given how expensive genetic testing is and how uneducated physicians are on proactively managing adoptees’ cases. While preventative medicine is expensive, it seems less costly than having a giant tumor pop up in the middle of your life. With all the funds and fees associated with adoption (that’s all I say about that), swinging a few extra thou toward comprehensive medical testing doesn’t seem like such a stretch after all.
This won’t be the last I discuss this topic, as it simply fuels my work on adoption and children’s rights. I hope to have my ICAV post ready soon, where I’ll look more closely at children’s rights and ethics with regards to intercountry adoption and lack of medical histories.
In the meantime…get yourself tested. Speak to your doctors if you need to, explain your situation, show them this post. Whatever. Message me on Twitter and I’ll be your ally. You deserve to know something and never knowing was not your fault. I’m here with you because no medical records is inhumane, archaic CRAP and we should never accept it.