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.
Most disabled people have lost an unfair amount of crip family and friends. This isn’t solely because of a lack of treatment, but also due to direct and indirect effects of societal ableism. Medical bias and lack of sufficient care being common causes.
I live with tremendous survivor’s guilt as it is. I regularly wonder if I’m making my crip ancestors proud. I ponder if I’m adequately passing along their wisdom to the next generation.
So, as soon as I catch wind of an SMA-related medical discovery, it’s a gut-punch of raw emotions. And a rabbit hole of “what could’ve been” rumination.
The truth is I feel downright awful about everyone who isn’t alive to see this day and contemplate if it could’ve saved them.
The logical side of my brain knows their deaths shouldn’t stop me from trying a new treatment. My feelings are reasonable, though. So I allow myself time to process.
Disabled community guilt makes an appearance, too.
This one’s tricky to explain.
I’ve built much of my social circle in the disabled community. Tons of my closest friends are disabled, but not all have SMA.
It’s odd knowing the news doesn’t include them. I never want to be insensitive when discussing a treatment with them.
I know they’re supportive and vice versa; a win for any of us is a win for all of us. But I wish this could be their celebration, too.
New drugs mean new risks.
The majority of prescriptions used today have been around for a long time. We have a decent grasp on their side effects and the general benefits are well known.
Medicines require rigorous tests and trials before approval, but human physiology is complex. Our generation is the first to experience SMA treatments. It’s still unclear how the new ones could impact fertility, how it might interact with other needed drugs, and more.
The urgency and variables differ among everyone with SMA.
There’s plenty of little ones who may succumb to SMA without prompt action. Or adults who want to maintain their current strength. Others fear it’s “too late“ for them.
I land somewhere outside those categories. It’d be excellent to put the brakes on my muscle progression and potentially regain some strength or stamina. Yet it’s not something I’m willing to rush. I’ll spend the next while doing my due diligence to ensure a new treatment is right for me. And everyone else should be free to do the same without feeling judged for their decision.
By the way, people who volunteer for early medical trials deserve endless recognition and praise.
On the other hand… fear of missing out takes over.
Look, I’m a very cautious person. I avoid making decisions on a whim.
But a small part of me worries I’ll be the last person with SMA left who hasn’t drank from the proverbial fountain.
It doesn’t influence my final choice. It’s just pesky human nature doing its thing.
And our showstoppers: inaccessibility via cost, country, criteria.
Remember when I mentioned there weren’t any treatments for SMA until 2016? Well, the first one still isn’t available for several people. Including myself.
Criteria for treatment-coverage generally boils down to an ableist cost–benefit analysis. Sometimes it’s done based on the individual, but my location slapped a big “NO” on everyone over a certain age. It’s far too expensive for anyone to pay out-of-pocket, so it’s not an option.
The second treatment is only effective for toddlers, but it’s more parallel to a cure. The resulting age constraints mean families must scramble to have it administered. Again, it’s not covered in Canada and its price tag is monumental.
This third treatment? Only time will tell.
Where does this leave us?
Please understand the predictability of the lives of people with SMA has been disrupted. It’s overwhelming.
No treatment will erase our disabled identities and realities. We’ll still need to continue fighting inaccessibility and ableism.
As we navigate through this uncharted territory, we need patience from our allies. It’s not a choice we’re taking lightly.
We need to know you’ll support our individual medical decisions, whatever they may be.
And if we don’t qualify for any… we might not want to talk about it for the foreseeable future.
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