I was about to interview an accomplished pianist, who happened to be blind, for a nonprofit’s fundraising letter.
Why did you get into your line of work?
he asked me before we started.
I am intrigued by resiliency. I am interested in how people find a way to solve major problems or adjust to unexpected changes in their lives, such as losing their vision, or having a baby with a disability. I think they have lessons that everyone can learn from.
Oh, inspiration porn.
No way! I’m very sensitive to that. That’s why I write in the first person. That’s why you get to sign off on what I write. I want to make sure I am representing you and your worldview. Your perspective. No assumptions.
Inspiration porn is rampant these days. And it’s offensive to many people with disabilities. It is the romanticizing of a disability. The idea that someone is instantly inspirational just because they get up in the morning and live their lives. It’s the picture of a smiling child with Down syndrome that “inspires” everyone on Facebook for no reason. It’s the video of someone with prosthetic legs walking or running that “inspires” everyone on YouTube.
I don’t do that.
I just tell people’s stories.
- Because until medicine advances to the point that there are no disabilities, there are people who are suffering, and I want to help end suffering.
- Because when someone is faced with a disability (or multiple disabilities), they often need the help of a host of specialists to help them adjust — emotionally, physically, occupationally. Those services don’t exist everywhere, and they’re expensive.
- Because until technology advances to the point that everyone, including people who are disabled, can have full access, in the meantime, they need specialized tools and specialized training to do what they want to do with their lives. Specialized tools and training are expensive because they’re customized for each individual. And disabilities — even if they share a name, don’t show up exactly the same way in each person.
- Because until insurance providers and public funding covers the needs of all people with disabilities — not just those who were disabled from an accident, or those whose disability is temporary, or those who are under a certain age — it can be expensive to be disabled.
- Because until employer’s perceptions change, and they realize what people with disabilities can do, the unemployment rate for people with disabilities is downright dismal — for no good reason.
People with disabilities don’t want to be special. They don’t want to inspire pity or charity.
They want to be included.
They want choices.
They want opportunities.
They want equality.
And I want to see that they get there.
Because it’s the right thing to do.
I simply tell their stories, in their own words, so they can get the tools and training they need and have the opportunity to succeed.