My perspective on disability and loss as someone who was ‘born this way’

What unites those born with a disability and those who acquire one later in life

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by Kevin Schaefer |

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The HBO series “The Last of Us” takes place in a dystopian world where zombie-like creatures roam the Earth 20 years after a mass infection wreaked havoc on humanity. Its main characters, Joel (Pedro Pascal) and Ellie (Bella Ramsey), travel across a post-apocalyptic America in an attempt to find a cure for the virus. Yet, whereas Ellie is a teenager who grew up in this world and never experienced anything else, Joel lived a life before the outbreak. He now carries with him the losses he’s had to suffer.

A scene in the sixth episode examines this dichotomy. During a heated exchange, Joel chastises Ellie for knowing nothing about loss, while Ellie says that everyone she’s ever cared for is gone.

Oddly enough, this scene resonated with me. True, I’ve never gone through a zombie apocalypse, but the question of loss echoes many conversations I’ve had with friends in disability communities. We discuss our diagnosis stories and whether we were older or too young to remember them.

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In my case, SMA is all I’ve ever known. I revealed my dysfunctional muscle-brain communication system to my parents and medical professionals as a toddler. By the time I was 2, I was already driving a power wheelchair and chasing down other kids on the preschool playground. My relationship with my disability isn’t linear, and there have been times in my life when I struggled to cope with its many hardships. Nonetheless, I don’t have a life without it to compare it with.

Other disabled friends, both in and outside the SMA community, received their diagnoses later in life. They had lives before becoming nonambulatory, doing pulmonary function tests, going to clinical appointments, and all of the other things that come with the world of disability. For them, their disability progression hits differently.

My friend and co-worker Matt Lafleur falls into the latter group. He received his Friedreich’s ataxia (FA) diagnosis at the age of 9 and didn’t start using a wheelchair until he was in college. He remembers a time when he wasn’t physically dependent on other people for everyday tasks. In his column for Friedreich’s Ataxia News, he articulates the mental and emotional toll that he experienced in the aftermath of his diagnosis.

When Matt and I conduct interviews with potential columnists for our parent company, we start by sharing our stories. We’re open about expressing our similarities and differences, particularly when it comes to the ages we were when we became part of the exclusive disability club.

Matt is always open about how difficult it was for him to accept the reality of FA, and how he often felt like he was a victim of his rare disease. His journey toward self-acceptance and the pursuit of hope was long and challenging.

Mine was no easy feat, either, but I do think that being born with SMA and diagnosed at 18 months gave me a certain advantage. While my diagnosis was life-altering for my parents, I was likely picking my nose and drinking from a bottle at the time. I was years away from wrestling with any kind of major existential questions.

And yet, our similarities outweigh our circumstantial differences. The nature of loss isn’t something we quantify. Rather, we both endure it routinely, be it through physical decline or when we lose friends in our communities. We remain united in our mission to create a better world for disabled individuals and their families, combat ableism, and ensure that people have access to lifesaving treatments.

So whether someone is born into this world or becomes thrust into it later in life, we’re connected.

“Mutant and proud.” — Mystique from “X-Men: First Class”

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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