I promised myself that I would never have biological children when I was first diagnosed. Since then, I’ve changed my mind.
Though I was the first person in my family to be officially diagnosed with :Ehlers-Danlos” Syndrome, you can trace the lineage through photos and campfire stories.
Elbows hyperextended, legs above heads, wrists in splints. These are images that frequently appear in our living room albums. My mother and brothers talk about avoiding my grandmother, who would often find a doorframe to lose consciousness for a moment, catch herself, and then go about her day.
When I was diagnosed, it all made sense for my mother’s side of the family. My great-high grandmother’s blood pressure, my grandmother’s chronic pain, my mother’s bad knees, all the aunts and cousins who have constant stomach aches, and other strange medical mysteries.
My connective tissue disorder (along with all of its complications and co-occurring conditions) is inherited. It came from my mother, who got it from her mother, and so on. Like dimples or hazel eyes, it was passed down.
This will almost certainly continue when I have children. This means that my children will almost certainly be disabled. And that’s fine with my partner and me.
Here’s what factors influence the decision to have children if you have a genetic disorder.
Do you suffer from a genetic disorder? Do you wish to have children? You only need to answer these two questions. They are not required to connect.
Now, I’d like to say that it’s a simple choice (because it should be), but it isn’t. Every single day, I am in pain. I’ve had surgeries, medical traumas, and moments when I wasn’t sure if I’d make it. How could I possibly risk passing that on to my future children?
I told myself that When I was first diagnosed, I would never give birth to biological children, even though this is something I’ve always desired. My mother kept apologizing from me for giving this to me because she didn’t know, My question is, why does disability undermine all of these objectives? And why does disability or any health issue imply being “less than”?
We must analyze our long history of ableism and eugenics.
As a disclaimer, we will begin with a general overview of the eugenics movement, which investigates discriminatory ideologies and practices. This also refers to the forced sterilization of disabled people in the United States. Please proceed at your own risk.
As a result, disabled people in America (and around the world) have been forced to go through medical trials, treatments, and procedures to prevent them from having children biologically.
On a global scale, this was mass sterilization and mass murder. Approximately 275,000 disabled people were murdered in Germany during this movement. According to a study from the University of Vermont, American doctors and others who supported the eugenics movement physically compelled the sterilization of at least 60,000 disabled people. From the 1930s to the 1970s, this was a reliable source. Some experts believe that eugenic sterilization is a viable option.
The alleged “logic” behind this line of thought is that disabled people are constantly in pain. All of the medical complications, all of the pain. Other than preventing more disabled people from being born, how else should they eradicate the struggles of disabled people?
When it comes to passing down genetic disabilities or illnesses, the core beliefs behind eugenics are the ones that fuel our guilt. Don’t let your child go through this. Don’t condemn them to a life of misery.
We are only expanding the idea that disabled people are inferior, weaker, and less human using this harmful rhetoric.
Our lives and struggles are valuable.
As a disabled person, I can attest that pain is unpleasant. Keeping track of medications, appointments, Being immunocompromised amid a pandemic are Not the most enjoyable aspects of my weekly routine.
But, describing our lives as disabled people as if we are always in pain undervalues the other vibrant, complex aspects of our lives. Yes, our health and disabilities are an essential part of who we are, and we don’t want to deny that.
The distinction is that disability is regarded as the end of something: our health, our happiness. Disability is a component. Our world’s challenge is designed to exclude disabled people due to ableist ideas and “well-intended” microaggressions rooted in eugenics — the belief that standardized ability (physical, emotional, cognitive, etc.) is everything.
Consider running out of gas on the highway. Many of us have been there, usually when we are running late for an important event. What should we do? We eventually find a way to get gas. We collect pennies from under the car seats.
Imagine telling someone who has run out of gas on the side of the road that they shouldn’t have children.
“Then your children and their children will run out of gas on the highway, you know, these traits are passed down!”
My kids will run out of gas on the highway because I ran out of gas on the road. We’ll tell stories around campfires about how close we were to that gas exit and how we should’ve made it. They’ll do it again, even if they swear they’ll always fill up to a quarter. And I’ll make sure they have the resources they need to deal with the situation.
My future children will almost certainly experience chronic pain. They will suffer from exhaustion. They will get scrapes and bruises from the playground, as well as the swinging metal legs of wheelchairs.
I don’t want them to have to worry about waiting for roadside assistance on an unknown street in the setting sun. I don’t want them to put ice packs on their bones and wish the throbbing would stop for a minute or two.
But I’ll make sure they have everything they need to get through whatever situation they end up in. I’ll have that extra gas canister and spare tire ready for them. I’ll fight for them to get every single accommodation they require.
I’ll put warm rags on their shins at night, just like my mother did for me and her mother did for her, and tell them, “I’m sorry you’re in pain.” Let us do everything we can to assist.”