By Karli Drew: For the Entire Post, Go Here…
A source of hope for one person can be a hindrance to another.
Most mainstream disability-related fundraisers focus on research. The goal is often to find a treatment and ultimately, a cure. The campaigns are typically led by non-disabled folks with good intentions. After all, society believes disabled people sit around eagerly waiting to be “fixed.” In many instances, disabled people are coerced into adopting that mindset as well. It leaves us with some serious internalized ableism to unpack.
The cure mentality always felt dangerous to me. Don’t get me wrong—I understand it’s a valid source of hope for many. But I didn’t want to spend my entire life waiting on an elusive cure only to fall into despair when it didn’t come. Instead, I embraced my disabled identity and life in all its beautifully chaotic glory.
I was born with a neuromuscular condition called Spinal Muscular Atrophy (SMA). I’ve never fixated on the details of it because, well, the science-y specifics don’t alter how I live. As scientific knowledge evolved, the not-so-factual-facts about my diagnosis changed too. I wasn’t even predicted to survive into childhood.
Of course, I’ve still relied on lifestyle adjustments and medical equipment (e.g., overnight non-invasive ventilation). The distinct difference between this and an undiscovered cure is the aids I use aren’t limited to people with SMA, have existed for decades, and improve my quality of life. Their risks vs. rewards were established before my time—and the efficacy is universal.
I’ve also opted out of certain procedures after careful consideration, despite the fact they were intended to be beneficial. The risks didn’t seem worth it.
All decisions that affect one’s body or mind should be made on an individual basis. Even people with the same condition have different needs and priorities. Not every medical intervention is an easy “yes.”
SMA just had its third treatment (second to include adults) approved by the FDA. This is a big deal, considering we had zero until late-2016. We’ve come a long way. Fast.
It’s a treatment, not a cure, and I’m not going to be running a marathon anytime soon. Regardless, it’s exciting for our community and Science Nerds everywhere.
But how should disabled people feel when a brand new medication is developed and approved for their specific diagnosis? Should they take it ASAP? What’s there to consider?
I’m glad you asked!
While I’m grateful for medical advancements, it’s a bit more complex than most acknowledge. They tend to come at an enormous literal and figurative cost. I can only speak for my own experiences, but I know others can relate. Medical discoveries and the accompanying decision-making aren’t clear-cut for disabled people.
It’s complicated, personal, and emotionally exhausting.
Here are a few (of many) insights into why:
Survivor’s guilt is real.