University Place

Being Access Able: Dealing with Disabilities

– Well, thanks, everybody, for joining us for this learning opportunity. It’s my pleasure to introduce Katherine Schneider, who is a PhD, a retired clinical psychologist living Eau Claire with her seeing eye dog, Luna. Katherine passionately advocates for access to all the good things in life. She’s authored a memoir, “To the Left of Inspiration: Adventures in Living with Disabilities,” a children’s book, “Your Treasure Hunt: Disabilities and Finding Your Gold,” and a book for seniors, “Occupying Aging: Delights, Disabilities, and Daily Life.” She also founded the American Library Association’s Schneider Family Book Award for children’s books with disability content and an award for superior journalism about disability issues through the Walter Cronkite School of Journalism at Arizona State University. Locally, she started the Access Eau Claire Fund through the Eau Claire Community Foundation to help nonprofit organizations work toward full inclusion of people with disabilities. I’ve gotten to know Kathy because of her impactful service on the Wisconsin Public Radio Association Board. And she is a compelling advocate for public radio in that context, as well as a good friend. We are thrilled to welcome Katherine Schneider to Wisconsin Public Radio and Wisconsin Public Television. Kathy.
[applause]

– It’s an honor to be here today and to help make you more access-able. And part of that involves me sharing the world of what it’s like to have a disability. And a little bit of that, as we go on you’ll hear about how we make different accommodations to get the same job done but done slightly differently. So, when this presentation opportunity came up, I was 68 years old and I thought I would get through life without ever doing a PowerPoint.
[laughter]

But it turns out everybody else does PowerPoint. So, not to be outdone–
[laughter]

I did the content of this PowerPoint and I outsourced the visuals to a friend of mine who used to teach PowerPoint, how to do it, in her classes. And what I figured out for the workaround, because I am not going to try to do my own flick and I can’t walk and chew gum at the same time anyway, so I will not do my own flicking but what I will do is I will ring a bell and I will ask my slide flicker to go to slide number…
[bell rings]

One. So that’s how we do PowerPoint.
[bell rings]

Two. Picture of the three books I wrote. Double advertising.
[laughter]

End of advertising.
[laughter]

[bell rings]
Three. Let’s start by doing a little bit of trivia questions to get your brains warmed up.

[bell rings]
Four. Name two US presidents with disabilities, and I know our studio audience is just writhing wanting to name them, but, instead, they are very quietly thinking the names.
[bell rings]

So, on slide five, we have people like FDR, Kennedy, Taft, Lincoln, and there’s about 12 US presidents that have had disabilities of one kind or another.
[bell rings]

Slide six. Braille was invented when? And when I give this question to students, I say full credit within a hundred years.
[laughter]

So get that idea in your mind and then we’ll go to
[bell rings]

slide seven and realize that it was not until the 1820s. So only 200 years ago did blind people have a method of written communication.
[bell rings]

Number eight. Beethoven composed what symphony after he became deaf? Now, I could give you a clue and do a little whistling, but that was not my field of study so–
[bell rings]

Nine. We have the answer. The Ninth Symphony.
[bell rings]

Slide 10. The first deaf college president, where and when?
[bell rings]

11. We have our answer. Gallaudet University, 1988.
[bell rings]

Question on slide 12. The Help America Vote Act guaranteed secret ballot to people with disabilities in federal elections in what year? I think you will be surprised.
[bell rings]

13. Not until 2002. Before that, when I voted, I could take a friend into the booth with me to help me cast my ballot or I could take one republican official, one democrat official, one guide dog, and me all in the booth.
[laughter]

Now, this did not feel like a secret ballot, although I’m sure everybody was confidential about it. The first time I voted independently using what people called a handicap voting machine, which has a remote kind of a thing where you press big buttons and you wear earphones and it reads all the choices and you use a remote. The first time I voted all by myself I cried because to me that’s part of what being an American is, is to have secret ballot. And I finally had achieved that. I think it was about 2006 when that happened. So next time you vote, and I’m sure you think about it some, but I bet you may think about it more, in terms of this is recent access for many of us.
[bell rings]

14. According to the census data, what percent of people have disabilities? And if you only remember one thing from this talk, I hope you remember…
[bell rings]

15. …the answer to that, which is 19%. So, as you look around your world, whatever that is, whether that’s journalism or whatever you’re doing in life, think about one out of five, one out of five. One out of five stories have some kind of disability content. One out of five sources, on and on and on with one out of five. When you look around the good life, however that’s defined for you. Is it open to the one out of five people who have disabilities in our world? Now, if you went through that quiz and said, “Ooh, I didn’t know quite all of them,” that’s fine. That’s actually good. Because that means I’m going to give you a little bit of information about a world that’s parallel to your world and intersects your world in a lot of ways but that you may not have focused on in the past. So–
[bell rings]

16. The world of people with disabilities, we’ll talk briefly about statistics, language, stereotypes, images, realities.
[bell rings]

17. The statistics, 19%, we already hit that one. Half of people over 65 will develop a disability. So I usually ask audiences how many of you plan or hope to get to be over 65?
[laughter]

Okay. So if that is you, it’s no fair to look to your right and left and say, “Okay, well, you can have the disability piece.”

We don’t know who’s going to get the disability piece. But half of people over 65 will get a disability. And that means something like one out of four families has a family member. So as you’re thinking about, if you’re in some kind of a business and you’re thinking about market share, disability is a piece of that that you want to consider.
[bell rings]

18. Language. What are you going to call us? Okay. Best thing to do is be accurate. For example, I am blind. That’s a fact. It’s not a dirty word. It’s just plain a fact. I am not visually-challenged or differently-abled or some kind of a euphemism. I’m blind. That’s it. Use accurate words. If you’re giving care to somebody with dementia, you are a caregiver. You are not a caretaker. You take care of property. You give care to people. And language does matter because language kind of creates our reality. Many of you will have heard, “Oh, people first.” You meet Kathy, say she is a person who is blind. Well, once you get these truisms down, then it turns around, things change so that some people with disabilities, especially people from the deaf community, are nowadays asking that it be disability first. So they are a Deaf person, and usually that’s spelled with a capital D. So people first? Maybe. Disability first? Maybe. What’s a poor human being to do? Poor human being, ask the person. If you want or need to refer to the disability piece, ask them. What do you want me to call it? Or what do you want it, how do you characterize your disability? And they may tell you something that you never would have thought of, but that’s how they do it. No two people do the disability piece just like no two people do the Packer-backer piece the same way.
[laughter]

It depends.
[bell rings]

19. Stereotypes about those of us with disabilities. Probably the biggest one is that people with disabilities are very different. They don’t care about the same things as other people. No. We still want to love, work, play, pray, and enjoy the good things of life, whether we have a disability and may have to do some pieces of that differently, same things.

Another stereotype is that if you have one disability, you have many disabilities, so that people oftentimes shout when they’re around me because, after all, they’re cool, they’ve heard of Helen Keller, so deaf, blind go together. Now, I would hasten to point out shouting at deaf people doesn’t help either.
[laughter]

Okay, so. Or many times people speak to somebody else, if I’m with a sighted person, they look at the sighted person and say, “What does she want?” And it usually takes about three rounds of me answering the question before the person realizes, yeah, actually, she can talk, she can understand the question, so I can be directing and not have to go through an intermediary. And then there’s the stereotypes that we’re super people, we’re inspirational, it’s just amazing, kind of a stereotype. And you might say, “Well, geez, why don’t you want that? Why don’t you want to be on a pedestal?” Well, people don’t go out to coffee or out for a beer with somebody up on a pedestal. It’s lonely up on a pedestal, and it’s untrue. Most of us, whether we have disability or not, we’re inspirational occasionally, and most of the time, not so much.
[laughter]

For any of us. So… it’s images. 20. There’s an old access symbol and a new access symbol. And very few people in the Midwest are familiar with the new access symbol. It seems to be more known on either coast. But, as you think about it, think about if that was you that was the wheelchair user, which one would you rather be? And maybe next time you get a chance and your local parking is, the signs are getting changed, maybe see about getting a new image instead of the old stationary image where the person is not moving, not going anywhere.
[bell rings]

21. Ways of viewing people with disabilities. There are kind of– There’s a very old way which views a disability as something morally wrong with a person. For example, back in Leviticus it says somebody with a blemish can’t offer temple service. So we may think, “Oh, well, that’s 3,000 years ago. That is long gone,” that we would view disabilities as a bad person. But it’s not really long gone, especially with some kinds of invisible disabilities like alcoholism, like AIDS. Morbid obesity is a disability that a lot of times people view as bad, as in, “Well, a person could do something about it if they wanted to.” Not necessarily. It is a disability. So we got the old moral model, shame on you kind of stuff in the back of our minds. Then there’s the medical model which says a disability is something that can be fixed, hopefully. So fix it. And/or if you can’t fix it, accommodate to it. Get the person a talking computer or do what you need to do to ameliorate the effects of the disability. Then probably the newest model of disability is the minority group model that says it’s a kind of diversity. Like any other kind of diversity, it is a piece of who that person is, and it’s a piece that has both positives and negatives about it. And the person integrates it into their complete personhood in their own unique way.
[bell rings]

22. Realities. Every individual is different. What I say, you may go up to somebody else who has a disability and say, “Well, I just learned that,” and they may say, “Oh, that’s full of bull.”
[laughter]

No, that’s not how it is. Okay. Everybody does it different. Not all disabilities are visible. So when you see somebody whip into the handicap parking spot and jump out of the car, you don’t necessarily get to give them a dirty look because you do not know. Maybe they are having cancer treatment, and they’ve got about the energy of a slug and they’re just barely getting there. You don’t know what somebody else’s disability is. You don’t know whether they have one. So if you look around your world and you don’t see people with disabilities, don’t assume they’re not there. 19% is around. And a new disability is obviously different than an old disability, which is why I wrote my occupying aging because I’m an old hand, I got a few tricks of the trade, and people with new disabilities need to know some of the tricks of the trade.
[bell rings]

Okay, 23. Some realities. I’m going to go through kind of an A through E of realities, of having, living every day with a disability.
[bell rings]

24. Those of us with disabilities have to ask and advocate for what we need, which means ask repeatedly and train, describe, and keep after getting what we need because the only one who knows exactly what I need is me. So that’s my job. Now, you can help by asking what you need to ask to meet my needs. “May I help?” is a good opener. It is not ever an insult to say to somebody, “May I help?” It’s putting them in charge. They get to say, “Yes, please,” or “No, thank you.” Now, if they bite your head off, you get to come back to me and say, “They bit my head off.”
[laughter]

“I did what you told and they bit my head off.” Okay. They were having a bad day.
[laughter]

Now, that’s no excuse for being rude, but that you do the right thing when you ask because, for example, if you just smile at me, unless you’ve had a lot of garlic, I don’t know you’re there.
[laughter]

So, saying, “May I help?” is a way of letting me know there is a human being around here.
[bell rings]

25. Bubble. There’s a bubble around those of us, especially with visible disabilities. People don’t want to get too close. They don’t want to do the wrong thing. They don’t want to say the wrong thing. We might fall apart if they did the wrong thing. Not really, but that’s the fear is, “Ooh, I don’t want to mess this up,” so people stay away. For example, at church I don’t get passed the collection plate. Now, you may say what’s the problem? You don’t have to give. But, no.
[laughter]

That’s not a good thing. What you need to do is feel the fear of, “Ooh, I don’t know how to do this,” but just go ahead and reach out and offer, for example, with the collection plate, saying “Here’s the plate.” Now, that’s not rocket science.
[laughter]

But it’s not done because it’s not the normal thing to do. I am lucky to have a guide dog. I’ve had guide dogs for 44 years, and they are great bubble breakers because people want to pet the dog and maybe know that they should ask, which is good, because then that breaks down the bubble.
[laughter]

For those of you that didn’t hear that, there was editorial comment from my dog, groaning and saying, “By all means, ask if you can pet.”
[laughter]

And… the answer will probably be yes, unless we’re in the middle of a street trying to do a street crossing or something at which point, please don’t. But there’s a bubble. You reach through, I reach through, and then there’s good contact.
[bell rings]

26. It costs more to have a disability. So, if you’re going to sign up to be part of the great minority group, sign up to be rich. But it doesn’t always work that way. It costs more time, energy, money. You have to plan more. For example, to get down here, I needed to come from Eau Claire to Madison, needed to plan a ride, needed to bring Mona’s drinking bowl, etc., etc. It takes time, takes energy. Sometimes things with disabilities cost more, like when I got my first computer that talked. That was a thousand bucks for the program. Now, in many ways, that’s better. For example, turn on iPhone, turn on voice-over, and it reads everything on the screen, and that’s right out of the box. So, sometimes it doesn’t cost more, but a lot of times it does. And sometimes people are not able to afford that because much of the cost is not paid for by the government for people with disabilities. So lots of people, for example, with hearing aids say, “No, not going to get one even though it might help. Even though it might help, I’m not going to get one because, number one, there’s a huge learning curve, number two, they’re expensive, number three, might not work and I can’t afford it.” So not everybody has every new gizmo that might help their disability because it does cost more. What you can do, there, again, the “May I help?” What’s needed? Let’s figure out how we can do it.
[bell rings]

I think we’re up to 27. Discrimination. Now, discrimination can be little stuff, like word choice, saying, “Well, that’s really lame.” Or, “Well, you gotta be blind to not know that.” Those kinds of word choices that could be stated differently and better. Or sometimes the discrimination is actual wrong-headed, illegal kinds of discrimination. For example, sometimes when I go into a place of public accommodation, they say no dogs. And then we go through, well, it is a service dog and legally any place of business is welcome to ask, it’s legal to ask, “Is that a trained service dog? And tell me some tasks that that dog can perform for you.” You don’t get to say to somebody, “What’s wrong with you?” Number one, it’s kind of a rude way of putting it, and, number two, that’s not legal. But you can say, “Tell me some tasks that trained service animal performs for you.” That is legal. It’s not legal to say, “Get out of here,” with a service animal. What you can do is using universal design in the things that you create. For example, next time you’re out there Facebooking a picture of a great sunset, instead of saying, “Wow, look at this!” please write, “Wow, look at this sunset.” You don’t have to go into a big complex description of it, and, no, I can’t see the sunset, but if I am your Facebook friend, I would at least like to know that it’s a sunset we’re going “wow” about.
[laughter]

Accessible web design, I could say a whole lot about it, but the thing that I want to emphasize is putting appropriate alt text tags on buttons so that when my screen-reader reads a button, it doesn’t just say button, button, button.
[laughter]

It needs to say choice one, choice two, or choice three, or something to accurately label that.
[bell rings]

28. It’s every day. I don’t wake up saying, “Oh, I’m blind.” But it’s there. It’s every day. Most the time, don’t think about it. But when I’m in a new environment, you bet. It becomes a bigger factor. What you can do about the every-day-ness of your friends’ and neighbors’ disabilities? You can listen. Sometimes it’s listening to them tell stories about something that happened because of their disability. You don’t have to have an answer, but listening. Walk beside. Enjoy. Later we’re going to get to some of the fun stories because there are good things about having a disability. It’s a different perspective. And learn from that person with a disability because their world is different, and it’s fun to learn about other people’s worlds.
[bell rings]

So, 29. I’d like to talk about some basic etiquette kind of tips for interacting, some of which you’ve already figured out, talked to the person. If you have trouble understanding them, ask them to repeat themselves however many times it takes, rather than just saying, “Oh, yes, dear,” when you have not a clue what they’ve just said to you. Using your words. Okay to use words like deaf or blind. Avoid the words wheelchair-bound, caretaker. They’re not accurate. They’re not appropriate. More tips.

When you meet a blind person, greeting, tell them who you are. My least favorite is people who come up and say, “Oh, I know who you are.” Well, great. I don’t know who you are. Or, “Do you know who I am?” Which, now that I’m old and cranky, I tend to answer, “No, I’m sorry I don’t. I’ll have to find somebody else who does.”
[laughter]

So, tell them who you are. Say “bye” when you leave a discussion with a blind person because if you’re on carpet, you may have walked off and they have not heard you leave, so they’re having a great conversation and you’re not there. If you want to pet a service animal, ask. Everybody’s got their own rules for how that works for them. So, good stuff. You’ve heard about some of the frustrations–
[bell rings]

The A through E kind of stuff, but there are the pearls. 31. Takes time to find the pearls, and you can’t give them to somebody else. If you remember your biology, an oyster, first there’s an irritant in the oyster, like a piece of sand or something grating on it, and then there’s enough calcium carbonate or oyster spit, whatever you call it, and it boils down to sometimes there’s a pearl. So some of the pearls that I would like to mention.
[bell rings]

32. Joy in accomplishment, like this PowerPoint. It took at least two people to make it, but I’m pretty proud of it. It’s done. I can take that off my bucket list.
[laughter]

What you can do? Celebrate the accomplishment with a person. Please don’t overpraise. Don’t condescend when somebody with a disability has done something. You can always comment on the effort, even if the actual production isn’t something that you can celebrate. Celebrate the effort. A lot of effort went into that. I can tell.
[bell rings]

33. The funny stuff that goes along with the interactions between all of us with each other. And I am not setting myself up as always being the innocent one, because I can be just as awkward and fumbling with somebody else’s disability as they can be with mine. But things are worth laughing about. For example, when I travel on airplanes, because my dog has metal in her harness, both she and I have to be hand-searched, wand-searched, enhanced search, which means they grope your crotch and your butt crack. Then, as of 2012, I have to wipe my hands on a rag and then they put it in a machine because what TSA has determined is a good way for sabotage would be for somebody to fill their service animal with explosives and blow everybody to kingdom come. Now, the fact that that has not happened, you can say, okay, here’s a good one for TSA and I am very glad it’s never happened, or you can say, well, maybe they’re barking up the wrong tree. But, anyway, the people that do the searching, they didn’t make the rule. I didn’t make the rule. So we all just put on our game faces, do our jobs, and it’s all fine. So a couple years ago I was in the Minneapolis Airport, up came a person from TSA and said, “What sex is your dog?” Now, you don’t mess with those people. You answer their questions. So I said, “It’s a female.” Thinking to myself she’d rather be searched by a male but it wasn’t going to be her choice, so okay.
[laughter]

The gal from TSA said, “By law, we have to have the same-sex person search the dog as the dog is.”
[laughter]

Now… I bit my tongue to not laugh…
[laughter]

because I did not wish to be in any trouble with these people. So, okay, mm-hmm, have a nice day, and on we went. I later Google searched and no, it is not the law.
[laughter]

But that person did what all of us do. From time to time, when we don’t know what to do, we get all officious and official and “It’s the law and I’m in charge,” and, you know, that’s how it is. Okay. I’ve been dining out on that story ever since.
[laughter]

You can’t make that stuff up but it happens, and you might as well laugh. If you have happened to be the one that did something extremely foolish and it comes to your attention that, “Oh, well, that was dumb,” by all means, say, “Whoops, let me try that again,” because we all do err when we’re around each other.
[bell rings]

34. Interdependence. I have a picture there of a Hopi Kachina doll called Tehabi, and it’s a mobility impaired man being carried by a blind man, and it says, “You see for me, I’ll walk for you.” And that is a great description of life, in my opinion. I may know that every day more often than you do, but it’s all of our lives. We’ve got two hands: one to reach out and help, one to reach out and be helped. As I mentioned, I’ve had guide dogs for 44 years now. They’re a great example of the kind of interdependence. Because working with a guide dog is not just telling them left, right, forward kind of stuff, it’s working as a team to accomplish the goal. So, for example, when I go into a new building, I’ve taught my dog the word “up.” And she can find the stairs that I have no idea whether to tell her left, right or where. We just keep walking and I keep saying, “Up,” and eventually. Now, interestingly, each of my dogs, when they get to be about seven years old, which is middle age for a bid dog, instead of showing me the stairs, they often show me the elevator.
[laughter]

They’re that smart about doing things. There’s an interdependence that I know about. For example, up until a couple years ago, the only way I knew a one-dollar bill from a five- dollar bill was asking a person. I’ve been cheated once in 68 years of life. That ain’t bad. I, as a psychologist, would not have thought that well of human nature.
[laughter]

So we have– A couple years ago the government came up with a gizmo to give blind people so they can put the money in a machine and it tells them, says out loud whether it’s a one or a five or something. But most of the time I still rely on the kind of interdependence of people are good and helpful most of the time. Okay, let’s–
[bell rings]

35 is a picture of us walking across a bridge on a campus where I work. And then you could flick through 36, 37, 38. We have some “for further information” kinds of things presented there. And then we have thank yous, including to the people that helped me design this fabulous PowerPoint kind of thing. So, what you’ve got here is a little bit of welcome to the world of the 19%, and I hope it works well for you. There is my email, I believe is on the screen, and I appreciate feedback. So if you like it, if you don’t like it, don’t hesitate to be in touch, and thank you for your attention.
[applause]