This Q&A has been edited for length.
Katherine Schneider, Ph.D. is a retired clinical psychologist from Wisconsin who writes about disability issues. She is the author of several books about living with disabilities, including her most recent, “Occupying Aging: Delights, Disabilities and Daily Life.” Schneider also is the sponsor of the National Center on Disability and Journalism’s “Katherine Schneider Journalism Award for Excellence in Reporting on Disability,” the only contest devoted exclusively to disability reporting.
The NCDJ sat down with Schneider to discuss her life, work and living with disability.
Q: What is your experience with disability?
A: I was born blind and I could see a little tiny bit so when I was little I could see bright colors and big objects…
Late in my career I developed fibromyalgia, which is an aches-and-pains kind of a disability, so it’s invisible.
So I have had experience with both a visible disability – blindness – and an invisible disability, fibromyalgia. I’ve got to tell you, blindness is easier. Because with an invisible disability, people don’t know, and then you’ve got to decide: OK, am I going to talk about it or am I not going to talk about it? And if you talk about it, if people can’t see it, they don’t understand it as much as if they can see it.
When people see me with a guide dog, they figure they pretty much understand. Now, they may have some misperceptions – like, sometimes people think that somebody who is blind is also deaf because hey, they’re cool, they know about Helen Keller and she was blind and deaf. Or they assume it’s a cognitive disability so they talk real loud or real slow. Or if you’re with a sighted person, they talk to the sighted person: “What does she want?” kind of stuff.
So they may have misperceptions, but they have some sort of an idea, whereas with an invisible disability they don’t know until it comes out somehow, and that’s harder in many ways, they think.
Q: Why do you write about disability?
A: I want people to understand that disability is different, but it’s just a part of my life. Like my most recent book, “Occupying Aging: Delights, Disability, and Daily Life,” I wrote that half of people over 65 will develop a disability and they’re new to the game.
I grew up being blind, so I’ve got 65 years of experience of what it’s like. So I’ve got some tricks of the trade. I want people to know that, yeah, you have to learn to do some things differently and you will encounter certain obstacles, but you can still go after the good life – just, differently.
Q: Tell us about your career as a clinical psychologist.
A: When I was a freshman in college, I was majoring in nuclear physics and my second time through calculus and advanced chemistry I began to realize, ‘You’re very interested in this subject, but this may not be where your talents are.’
I took a psych course because I needed something at 8 o’ clock and I was fascinated –people are almost as interesting as hard science, so I kept going. I got to do some volunteer work early on and that was what convinced me psych was my field because interacting with people was just a lot of fun. As I went on, I learned how to do that better and better, and I loved psych as a field because I could do so many different things: I could teach; I could counsel; I could be an administrator; I could do all of the above. Even if you’re counseling all day, even if people have the same problem … well, each person has their own strengths so, as I sometimes said, I got paid to watch people grow.
Q: You’re also the author of a children’s book, “Your Treasure Hunt: Disabilities and Finding Your Gold.” Why did you decide to write that book?
A: I wrote the kids’ book because over the years, probably 20 times a year, I go out in the schools and talk to kids about living with disabilities, whether it’s their own or their classmates. I just realized that there is no book like my kids’ book. I’m very happy with it. Because, yeah, there are books about kids with disabilities, but some of them are sort of sugary sweet and they don’t really talk about both the good parts and the hard parts.
So what do you do when someone calls you a retard? And they do … it happens on the playground or wherever. I wanted a book that parents or caregivers and kids could read together to raise those issues and get them talking. Because parents are afraid that’s going to happen to their kids with disabilities, but they don’t know how to talk about it.
Q: How should parents open up that conversation with their kids about disabilities?
A: Directly. “Are you getting picked on? Are you picking on somebody?” If (the child) comes home looking like a thundercloud, (ask) “What happened?” And not in a sense that they’re necessarily going to kill the other kid, but in the sense of, this is important to talk about, and what do you need so you can handle the issue? Or, if it’s beyond the level that the kid can handle, then how are we as a family going to deal with it?
Q: You were the first blind child in the Kalamazoo, Mich., school system. What was that like?
Good in many ways in that I learned right from the beginning that I live in a sighted world and if it ain’t working for me, I’ve got to figure out what needs done, and I’ve got to ask and advocate. I learned early to ask for what I need, which is a very good thing. Because once kids with disabilities nowadays get out of school, they go into a world where people don’t have to meet their needs so they’ve got to learn to ask.
The not-so-good thing for a lot of kids that grew up with disabilities in public schools is that it’s hard socially. People may have to see you in class and all, but they don’t have to play with you on the playground. So that was hard. I was in clubs and things like that, which helped. But that part of my life got better as I became adult and other people in life became adult.
Q: How did you get involved with the NCDJ?
A: Back in 2002, my dad passed away and left me some money. And I looked around and said, ‘OK, I’ve worked; I have enough money to live on, so I can do something good with this money.’ What a wonderful opportunity to have. What I decided to do was I set up an award with the American Library Association for kids books about disabilities. So now, for the last 12 years, they give out three awards: one for very young kids’ books, one for middle grade, and one for high school – good books with disability content in them. (As a result), more and better books are getting written and published, which is very cool…
So I got that up and running. I thought, ‘Okay, what else do I want to fix?’ I thought, ‘Well, I would really like there to be better journalism [on disability.]’ What I learned from this American Library experience is if you find the right people to run an award, it really could impact a whole field… So I approached NCDJ… Now, we are in the third year, and it is delightful. And they’re doing great things. Every time I come out here (to Arizona State University) I see wonderful stuff happening.
Q: How can news sites use technology to make their products more accessible?
A: Making sure your website is accessible – little things like alt-text tagging pictures so I know what the picture is of, or putting that in a separate sidebar.
If you’re going to have a video, have audio descriptions. Like if I’m going to watch a murder mystery, I’d like to know who got shot. Unless there’s an audio description, I have to sort of listen and figure out who isn’t talking anymore. Are they the one that got it?
Q: How do you want to see journalists cover disability?
A: For finding an angle for a story, I would suggest people ask themselves, ‘Okay, if I was blind, if I was deaf, if was a wheelchair user – fill in the blank with your favorite disability – how would this particular situation be different?’ That can give you an angle to find a story. For example, if I was a wheelchair-using kid, how would I dress up for Halloween? What would be different about that? And then not necessarily have the article just be about ‘disabled kids dress for Halloween’, but have it be (about) popular costumes and, OK, one of the people happens to be a wheelchair user… Disability doesn’t have to be the whole story…
Avoid words that disable people. One I’m noticing a lot lately is if you “give care” to somebody who has dementia, you are a caregiver. You are not a caretaker. You take care of property… to people you give care. Using the NCDJ style guide, watch your language. Not in terms of being PC… use honest language.