Heather Shorten, of Cleveland, Ohio, was diagnosed with late-onset Pompe disease in 2015. She serves as the executive director of the Pompe Alliance. She shares about a time an awkward conversation became an opportunity to share awareness about disabilities.

So actually, I had an awkward kind of an awkward situation just recently. My dad and I had traveled to the AMDA conference in San Antonio. And we had the because of the weather was difficult getting home. So we ended up spending the night in Houston because our flight was canceled.

And we were checking into this hotel and the woman behind the counter said something about not putting us in an accessible room. And my dad said, “Well, what does that mean?” And I explained to him what an accessible room meant. And he said to the woman behind the counter, “Well, actually she does have a disability. And she went to reprimand my dad because he — she thought he was making fun of me.

And when he then went to say to her, “No, she has a disability,” she was very friendly about it, but she just didn’t believe him. And so I did say to her, “I do have a rare disease that causes me a disability.”

And she then apologized and she tried to — she says, “Well, you look like you’re doing really well.” And she said, “Are you OK in this regular room?” And so it was a teachable moment that not all disability is visible or not all illness is visible.

And she was apologetic. I don’t blame her for her response to that because I can walk. I don’t look like what people think of when we, as Americans, think of people with a disability. So I don’t blame her for her response. But it was a teachable moment.

And I mean, I’m happy with the way it went because it was a teachable moment. And then because I was able to say to her that I have some difficulty with certain things, she was then very apologetic and said, “If you need this accessible room, I can put you in it.” So I’m really happy with the way it went because it was an opportunity for her to learn something in a way that started off awkward but hopefully didn’t end that way.