My mom showed me how to advocate for myself

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by Kevin Schaefer |

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In the 1995 drama “Mr. Holland’s Opus,” the film’s titular protagonist confronts a boardroom of school administrators during a pivotal third-act scene. Glenn Holland (Richard Dreyfuss), a longtime high school music teacher, refuses to back down when his superiors declare their intention to eliminate the school’s music and theater departments to cut costs. When one board member insists that they’re doing their best, Holland defiantly replies, “Your best is not good enough.”

“Mr. Holland’s Opus” has always been a favorite in my family, and this scene in particular resonates with me more now than when I was a kid. I see the character’s no-nonsense attitude and refusal to accept the status quo, and I recall the way my mom advocated for my education and medical care throughout my life.

My mom exudes gentleness and compassion, but she’s also never shied away from standing against systemic ableism. Before my educational experience even began, she had to fight to get me into a classroom with my nondisabled peers. Even though spinal muscular atrophy (SMA) doesn’t affect my cognitive function, there were people who felt my physical disability made me too much to handle. Mom made sure they didn’t get their way.

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That is just one example. After almost 30 years of living as a disabled person, I’ve experienced educational hurdles, medical gaslighting, insurance obstacles, difficulties accessing my care, and the ignorance of people outside the medical sphere.

There was one time when a restaurant manager tried to refuse my family a table because I had my late service dog with me. This happened years ago, but I still remember the visceral emotions I felt at that moment.

Some people might have just left, but my mom stood her ground. She knew if she relented, the manager would continue to discriminate against other service dog owners in the future. We ate there that day with my canine companion at my side. A family who had seen the incident unfold kindly paid for our meal.

Learning to be an advocate for myself, and others

As I grew older, I learned to take on many of the responsibilities my mom carried back then. I now schedule my medical appointments, manage my caregiving team, coordinate with insurance providers, and handle my finances. Above all, I know how to advocate for myself after years of watching my mom show me how. After every IEP meeting, every medical appointment, and every exhaustive call with an insurance representative, I saw her demonstrate the kind of resilience that I would need to live my life.

Since becoming an active adult in the SMA community, younger parents and families have come to me and my parents for support. When they bring up school or medical scenarios like the ones I experienced, I tell them there’s a time to be polite and a time to be firm. My mom illustrated that distinction throughout my childhood and adolescence.

I’ve recently become active with Cure SMA’s advocacy and awareness division. As I think about the prospect of speaking with politicians about living with SMA and the needs of my community, I reflect on how my mom prepared me for this role. My life is intrinsically tied to advocacy, and there will be times when I will need to invoke a Mr. Holland kind of energy to make others recognize my humanity.

Thanks, Mom, for showing me what it takes.

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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