Sarah Kovac does most of her daily tasks with her feet, everything from driving to making coffee to changing her kids’ diapers. Kovac was born with arthrogryposis, a rare birth defect that left her arms and hands underdeveloped.
The journalist and advocate for people with disabilities has teamed up with Consumer Reports to create an advice section on adaptive living, aging and accessibility. She said that even if you consider yourself able-bodied now, everyone will experience changes to vision, hearing, mobility and strength due to aging, accidents or temporary conditions like pregnancy.
Kovac calls it the “ability drift.”
4 questions with Sarah Kovac
Can you share more about your experience with disability?
“ I was born with a disability that’s very rare. It’s called arthrogryposis, and it affects everybody differently, but in my case, it means I can’t really use my hands and arms. And so, at about age 2, I started to figure out, ‘Oh, hey. My toes work much better,’ so I started picking up crayons and my spoon at the table with my toes.
“Luckily, my parents didn’t intervene. They just kind of let me do my own thing. And so I went on to learn how to do everything that you have to do in order to live independently. I lived by myself for a while, and now I live in a home with my husband and three kids and have a career, so I’ve achieved everything that I’ve wanted to achieve. I’ve just had to do it very differently than the average person.”
What do you hope to underscore with the term ‘ability drift’?
“ It’s not a binary, and we need to be able to talk about your changes in needs as you have arthritis and you need an automatic can opener. It’s like a disability purgatory. You don’t consider yourself disabled, but you can acknowledge that there are things that are getting harder for you, and you need to adapt.
“That’s where the disability community really shines because we’ve been spending our lifetimes finding ways to get around the ability drift that a lot of people are experiencing. And it’s not always with age. Sometimes you’re scoping out the wheelchair access in a building because you have a baby and you’re using a stroller and you can’t use the stairs.
“It can happen to anybody. It does happen to everybody. Nobody really likes to think about it, but it’s important that we create spaces where the disabled community and aging communities can show their solutions and show the rest of us what we can do when we encounter something like that.”
In your collaboration with Consumer Reports, you aim to help people with disabilities share their expertise with the ordinary consumer. What kinds of things are the journalists you’re working with teaching people?
“ It was a great window for me to bring in a lot of journalists who have disabilities and folks who are aging. There was one who uses a walker, so we got her to write about walkers.
“There’s a good friend of mine who’s a journalist that is an amputee, and she wrote about kitchen tools that are easy to use with one hand. And it’s funny because I don’t use any hands, but I still found value in what she wrote. Several of the products that she talked about, I actually bought for myself to use with my feet.
“A person may be using a product for a very specific reason, but it can apply to a whole lot more situations than just that.
“We brought in a blind journalist to talk about how to adapt your home if you’re losing your vision, or for a parent who’s losing their vision, and he has these amazing tips and tricks and hacks that he’s used around his house to help him get around better. We brought in the mother of a deaf child to talk about all the ways that she’s adapting her home, so if you’re starting to lose your hearing, here are some things that you can do. This is just wisdom that you cannot get anywhere else.”
What is different in your approach from other disability advocacy?
“ The disabled community is used to being spoken at. We have well-meaning people who might be doctors or therapists who are amazing and incredible and needed, but they haven’t lived the life.
“I have people come to me fairly often on social media and say, ‘My kid is having issues because they have a disability in their arms. What do I do?’ I’m the person. I’m the one who knows the answer to that question better than anybody else.
“But it’s been hard to pass the microphone to the people who are the actual experts because the industry hasn’t really viewed it that way. So I think it’s changing. The work I am doing here, I also did at USA Today before I came here. So I think the winds are changing, and I’m very glad to see that we’re actually reaching out to the real experts when it comes to living life in this way.”
This interview was edited for clarity.
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Ashley Locke produced and edited this interview for broadcast with Micaela Rodríguez. Grace Griffin produced it for the web.
This article was originally published on WBUR.org.
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