Chiseling away at inaccessibility, slowly but surely
What we do on Rare Disease Day lays the foundation for future progress
When I backed off my van’s wheelchair lift, I didn’t find what I expected to. We had just parked at a restaurant we’d never been to in a different town, and I knew there would be a ramp onto the sidewalk to my left. I just didn’t think it would look like this.
Public wheelchair ramps come in a few varieties, and in my 27 years of living with SMA, I’ve become familiar with them all — except the one that greeted me here. Evidently, the property hadn’t originally been built with accessibility in mind and had no ramp from the parking lot. Later owners must have decided to fix that, because at some point, someone had chiseled away the sharp edge of a step at the end of the sidewalk to create a makeshift ramp without knowing that I’d need it someday.
Was it a perfect solution? No, but it was certainly creative, and more importantly, it worked. And on the other side of that ramp and through the door awaited a spacious dining area, friendly staff, and a delicious meal. All of which my family and I would’ve missed out on had no one chosen to carve that ramp outside.
I know some might have shaken their heads or even scoffed at this makeshift design, but while it initially caught me off guard, it deserves a better, more thoughtful response. Think about it: Someone probably spent significant time and energy to create that ramp. They used the resources they had available to make that restaurant accessible. Why? Because they cared about disabled people — people like me or you or someone you love — and they wanted us to have a seat at their table. Literally!
I think there’s a powerful reminder to be found in that ramp and what it represents. It reminds us that every effort we make matters, and it could be the difference in whether or not someone has an opportunity to be included. This is where a more accessible society begins.
In tackling inaccessibility, let’s start small
As we celebrate Rare Disease Day today, disability advocates are shining light on this community‘s needs and taking a greatly deserved moment to recognize the triumphs we’ve already achieved. But with so many causes and different aspects of disabled life needing and worthy of attention, it’s not always easy to know which ones to focus on. How can we possibly cover everything in just one day?
Truthfully, we can’t, but that’s not the goal. Rare Disease Day is just one day, but there are at least 364 more each year. What we do today can lay the foundation for the work to continue tomorrow and the next day and the next.
Yes, our world has inaccessibility problems, both in infrastructure and mindset, but it doesn’t have to stay that way forever. Change rarely happens overnight, but when we care enough to do what we can with what we have to solve those problems for ourselves and others, seemingly immovable, concrete obstacles can be carved into something entirely different. The process may, at times, be painstaking or take longer than we’d like, but our efforts become fruitful in everyone who is positively impacted by them.
If on this Rare Disease Day we find ourselves feeling like we can’t possibly do enough, I hope we’ll refocus on the importance of what we can do and the continuing ripple effect it can have. Remember, it takes only one act of kindness to brighten someone’s day, one story to spark inspiration, or one makeshift ramp to make someone feel seen. And if we join all of our individual actions and voices together in the days, months, and years ahead of us, we can chisel our present reality into an even better vision for the future.
Today might be where our work begins for the first time or starts to take root after it’s already been planted, but today is not where it ends. We have more opportunities before us to create change together. And our efforts will always matter, possibly more than we will ever know.
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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