When I was first diagnosed, I promised that I would never have biological children. I’ve since changed my mind.
Though I was the first person to be officially diagnosed with Ehlers-Danlos Syndrome in my family, you can track the lineage through photos, through body horror stories around campfires.
Hyperextended elbows, legs above heads, wrists resting in splints. These are common images in our living room albums. My mom and her brothers talk about side-stepping around my grandmother, who’d frequently find a doorframe to lose consciousness for a moment, catch herself, then move about her day.
“Oh, don’t worry about it,” the kids would say to their friends, bending down to help their mother off the floor. “This happens all the time.” And the next minute, my grandmother would have cookies ready and another batch in the oven, all dizziness pushed aside for now.
When I was diagnosed, it all clicked for my family members on my mother’s side, too. My great-grandmother’s blood pressure spells, my grandmother’s chronic pain, my mom’s bad knees, all the aunts and cousins with constant stomach aches or other strange medical mysteries.
My connective tissue disorder (and all of the complications and co-occurring disorders that come with it) is genetic. I got it from my mom, who got it from her mom, and so on. Passed on like dimples or hazel eyes.
This line will more than likely continue when I have children. This means that my kids will more than likely be disabled. And my partner and I are OK with that.
Here’s what goes into the decision to have kids when you have a genetic disorder.
Do you have a genetic disorder? Do you want children? These are the only two questions you need to answer. They do not need to connect.
Now, I want to say that it’s a simple choice (because I feel it should be), but it’s not. I experience pain every single day. I have had surgeries, and medical traumas, and moments where I wasn’t sure if I would survive. How could I risk passing that on to my future kids?
When I was first diagnosed, I promised that I would never have biological children, even though this is something I’ve personally always wanted. My mom apologized to me over and over again for giving this to me — for not knowing, for “causing” the pain.
It took us a while to learn that, even though this is genetic, my mother did not sit down with a chart of genes and say, “Hm, I think we’ll mix some gastrointestinal problems in with the dysautonomia and just loosen these connective tissues a bit more…”
I think any of us who want children obviously want them to have wonderful, painless, healthy lives. We want them to be able to give them the resources they need to thrive. We want them to be happy.
My question is: why does disability negate all of these goals? And why does disability or any health concerns mean “less than”?
We need to examine our long history of ableism and eugenics.
As a disclaimer, we are going to dive into a general overview of the eugenics movement, which explores ableist, racist, and other discriminatory ideologies and practices. This also speaks about the forced sterilization of disabled people in America. Please continue at your own discretion.
The foundation to
By “other,” this means neurodiverse, chronically ill, disabled people. Additionally, the
In implementing the science of eugenics involving health alone, one would essentially be selecting to “breed out” specific genes that cause disability, illness, and other “undesirable” traits.
As a result, disabled people in America (and all over the world) were forced to undergo medical trials, treatments, and procedures to biologically halt them from having children.
This movement in America
This was mass sterilization and mass murder on a global level.
In Germany during this movement, approximately 275,000 disabled people were murdered. Research at the University of Vermont shows that American doctors and others who believed in the eugenics movement physically forced the sterilization of at least
The supposed “logic” behind this line of thinking is that disabled people are in constant suffering. All the health complications, the pain. How else should they eradicate the struggles of disabled people besides stopping more disabled people from being born?
The core beliefs behind eugenics are the ones that fuel our own guilt when it comes to passing down hereditary disabilities or illnesses. Don’t let your child suffer. Don’t give them a life of pain.
Through this harmful rhetoric, we are only furthering the idea that disabled people are inferior, weaker, less human.
Know this: our lives and our struggles are worth living.
As a disabled person, I can attest to the fact that pain is not pleasant. Keeping track of daily medications and appointments. Being immunocompromised during a pandemic. Not necessarily the most enjoyable parts of my weekly routine.
However, describing our lives as disabled people as though we are suffering all the time is undervaluing the other vibrant, complex pieces of our lives. Yes, our health, our disabilities, are a huge part of who we are, and we don’t want to deny that.
The difference is that disability is treated like the end of something: our health, our happiness. Disability is a piece. The real challenge is that our world is made to push out disabled people because of ableist ideas and “well-intended” microaggressions that stem from eugenics — from the idea that standardized ability (physical, emotional, cognitive, etc.) is everything.
But so are the other dirty, gritty aspects of life — like wet socks, and morning commutes, and bills.
Take running out of gas on the highway, for example. Lots of us have been there, usually when we are late for something important. What do we do? Well, we find a way to get gas. We scrape pennies together from under the car seats. We call for assistance. Get a tow. Ask our neighbors to find mile mark 523.
Imagine telling somebody who has run out of gas on the highway that they shouldn’t have children.
“Then your children and their children are going to run out of gas on the highway — these characteristics are passed on, you know!”
Listen. My children are going to run out of gas on the highway because I’ve run out of gas on the highway. We’ll tell stories around campfires about how we were just so close to that gas exit and if only we could’ve made it. They’ll do it again even after they swear they’ll always fill up at a quarter to empty. And I’m going to make sure that they have the resources they need to navigate that situation.
My future kids are probably going to have episodes of chronic pain. They are going to struggle with fatigue. They are going to have scrapes and bruises from the playground and from the swinging metal legs of wheelchairs.
I don’t want them to have to worry about waiting for roadside help under the setting sun on an unknown street. I don’t want them to place ice packs to their bones and wish they could just make the throbbing stop for a minute or two.
But I’m going to make sure they have what they need to navigate whatever situation they end up in. I’ll have that extra gas canister for them, that spare tire. I’ll advocate for them to have every single accommodation they need.
I’ll put warm rags on their shins at night like my mom did for me and her mom did for her and say, “I’m sorry you are in pain. Let’s do what we can to help.”
My future kids will probably be disabled. I hope they are.
Aryanna Falkner is a disabled writer from Buffalo, New York. She’s an MFA candidate in fiction at Bowling Green State University in Ohio, where she lives with her fiancé and their fluffy black cat. Her writing has appeared or is forthcoming in Blanket Sea and Tule Review. Find her and pictures of her cat on Twitter.