Kate Archer Kent: 00:05 People with disabilities and advocates for disability rights have been particularly concerned by one image making the rounds on social media. It's an upright man, silhouetted against a backdrop of stars with an empty wheelchair in the foreground. The British theoretical physicist Stephen Hawking died last week with that image of Hawking came references to that he could finally be able to walk among the stars or be free of his wheelchair. It is the Morning Show. I am Kate Archer Kent. We're having a conversation about disability, how we characterize it, how we describe it. Lawrence Carter-Long is Communications Director for the Disability Rights Education & Defense Fund and the Director of the group's Disability and Media Alliance Project that promotes accurate representation of people with disabilities and works to eliminate stereotypes and misinformation about disability in news, TV, films, and other media. Lawrence, welcome to the program.

Lawrence Carter-Long: 01:05 Thank you for having me.

Kate Archer Kent: 01:06 Well, let's start with Stephen Hawking. Much has been written about him since his death last week and certainly the coverage has focused a lot on the fact that he had ALS which required him to be in a wheelchair for much of his life. So generally, how did the media do when talking about that aspect of his life?

Speaker 2: 01:28 It really was a mixed bag when you think about Hawking and everything that he did. He was a brilliant scientist and also a disabled man and he did not overcome his disability to achieve the things they did and that includes all of the scientific work, the books that he published, even appearing on “The Simpsons” and “The Big Bang Theory” multiple times. All those things that Hawking accomplished, he accomplished while he was disabled. He used both an electric wheelchair and a communications device for most of the 74 years he was on this planet. It only seems fair to recognize all of those things, to celebrate all of those things because all of them are true. We were troubled though a little bit that that when you saw images like the ones you mentioned, that what they tended to do was push the fact that he was a disabled man—who had accomplished these things—kind of into the background and reduce him only to either somebody who walked or someone who didn't walk and we wanted to see that really addressed. I think this gives us an opportunity. We are in a really unique time in our society where there's a lot of confusion about how we think about disability, how we're supposed to talk about disability, and I think the controversy around the depictions, the various different depictions of Hawking, really illustrate that.

Kate Archer Kent: 02:50 Some have been taking the media to task for using phrases like overcame, has disability or in spite of his disability and stories about his death. Can you talk about the pushback against using language like that?

Speaker 2: 03:05 Yeah, it w, you know, it's very interesting when people would ask Hawking if having a disability who held him back, Hawking’s standard response became “Having ALS gave him more time to think.” Hawking himself felt that his ideas were in part because of his condition, not in spite of it. And so, one of the things that we wanted to do was to, was to really highlight that and illustrate that point. There's a tendency in our culture to try to diminish disability, to cut it out, to cure it, to fix it, and that dates back beyond the telethons. There has been this historical notion that disability is only a diagnosis for most of human history. That's all the disability has been and but we're at a unique time now, 28 years after the Americans with Disabilities Act was passed where we have a whole generation of people that didn't feel shame about having a disability and they felt that this is a part of me. Just like my gender is a part of me, just like my ethnicity is a part of me, and so they started claiming disability as part of their identity.

Speaker 2: 04:18 In fact, people have started to say that they want to put the disability community first with the language that they speak, so instead of even being a person with a disability, they'll call themselves a disabled person. And so I think what the Hawking situation really illustrates is that moment in time that we find ourselves in right now where all of that acute confusion kind of co-exists all at once.

Kate Archer Kent: 04:42 What are you referencing to when you mention the telethons? Go into that for us.

Speaker 2: 04:48 Well in telethons, you know the era. You know, Jerry Lewis stopped doing the telethon, um, a number of years ago before he died. That notion was that the disability was something that needed to be cured or fixed or cut out or removed. Lewis himself said that people were imprisoned in steel chairs. He wrote in PARADE magazine that those with disabilities were half persons and if he had had muscular dystrophy, he'd have to resign himself to living like that. There were people like Mike Irvin… Groups called “Jerry's Orphans” that started pushing back and saying, wait a minute, having a disability is a part of who I am. It's part of my identity. I'm not ashamed of that. I'm not shy about that. In fact, there are millions 57 million other Americans who have disabilities too and so disability started to shift in those days. Really beginning at the end of the 1960s with the

rise of the independent living movement there at the tail end of, of really the big rise in civil rights both for African Americans and for women were disability rights. People started saying, wait a minute, I want my rights. Claiming disability as an identity and finding disability community was a big, big part of that.

Kate Archer Kent: 06:08 We're talking about the language surrounding disability with Lawrence Carter Long, the Communications Director for the Disability Rights Education & Defense Fund. He also directs the groups Disability and Media Alliance Project which promotes accurate represent representation of people with disabilities and we're still eliminate stereotypes in news, TV films and other media. You can join this conversation. What is the media getting wrong about disability? Do you think we have a tendency to regard disability as a bad thing? If so, how can we get past that? What is that step? Are you a person with a disability? If so, what do people say to you that you wish they would? Not? 800, 64 to one, two, three, four. You can send an email to ideas at w, p, r.org, Lawrence. In some cases, the words paralyzing or debilitating were used to describe the ALS that Stephen Hawking had and I can see why some writers wanted to use those words. They're trying to describe to the best of your ability, how they might see the disease, but where does that get into trouble?

Lawrence Carter-Long: 07:26 I think it gets into trouble when one makes those assumptions without speaking with disabled people about how they feel about those conditions themselves. Especially when it comes to hawking's use of a wheelchair. If you think about it, again, Hawking used the electric wheelchair for most of the 77 decades he was on the planet is the communications device that he used was almost iconic. You know, when you would hear that computer generated voice both in THE SIMPSONS, you know, or on something like THE BIG BANG THEORY reaching out into pop culture. People distinctively knew that that was Stephen Hawking. Those things became touchstones. They think they really pushed sort of the, the depiction of disability forward in a lot of different ways in Hawking seemed to have a sense of humor about himself and about it. So the tendency to erase those things to sort of pretend that they weren't there or to just paint them as something as negative, I don't think is reflective of either Hawking's wife or the life of most people who use those devices, or when you think about it, to people who use wheelchairs.

Speaker 2: 08:39 Wheelchairs are really Chariots of Independence. Like a skateboard or a bicycle. But you know, the, one of the phrases that was used that got a lot of heat on the Internet and among

the community was people would say that Hawking was wheelchair bound. Well, it's quite the opposite. No one is tied down. Like we'd said, no one is imprisoned. Wheelchairs are one of the means that people use to go to school, to go to work, to hang out with their friends. And so what we're, what we're trying to do in highlighting this controversy and bringing it up for public discussion is to say, when you think about using these words and phrases, it's probably a good idea to ask people who actually use those devices first before making those assumptions.

Kate Archer Kent: 09:25 Let's go to Maggie joining us from Madison. Good morning, Maggie.

Caller: 09:30 Good morning. Thank you for taking my call.

Kate Archer Kent: 09:32 Sure.

Lawrence Carter-Long: 09:32 Hi Maggie.

Caller: 09:35 Hi. I have a question for you actually for your guests. I work, um, in medical profession. I work often with people with disabilities, especially when I worked more in home health care. And I guess, um, my question is I think it's amazing to think about, um, especially comparing early lifestyles of people with disabilities, people with disabilities earlier in our time when you're talking about wheelchairs being access to independence and that's amazing. And yet at the same time, I guess my question is, um, uh, I've worked with a lot of quadriplegic. For example, I worked with a woman who ran for city council. I mean just really inspiring people who fight for access and visibility of people with disabilities, but I still, I guess on a personal level, almost all of them, maybe all of them would have, would say, I wouldn't mind walking again though. So I guess my question is, is Eh, you know, am I myself, I'm not in a wheelchair, but everyone I've worked with who is I, especially if they became through multiple sclerosis or through an accident, um, later in life they say, oh my, you know, I would, don't get me wrong, I'd love to be able to walk again. So while they do view their, their kind of disability as a part of their identity is certainly nothing to be ashamed of. I guess I'm just wondering how he would address that.

Speaker 3: 10:58 Right?

Speaker 4: 10:59 Really, are we really supposed to say, um, this is, uh, this is the only good thing I would love to be cured of their MS.

Kate Archer Kent: 11:09 Maggie, thank you so much for bringing this to the table. Lawrence, go ahead with, with that. Was that tension there?

Lawrence Carter-Long: 11:16 Yeah, the tension. That's fair. I think, and that's accurate. According to the last census figures, or at least by conservative figures, there are 57 million Americans with various types of disabilities. So you're not going to find consensus among every single individual who has a disability. And I would even say, there's probably a difference between those who have grown up with a disability, somebody was born with a disability and then those folks who, you know, became disabled later. Eighty percent of those who have a disability usually get it, they get a disability later in life that's either through incident or accident or some sort of type of event that has occurred. Now, if you've been walking on the planet, let's say for 30 years of your life, right? That's how you're accustomed to getting around.

Speaker 2: 12:09 Of course, it's easier to get around that way. You know, access continues to be an issue. Access, equal access continues to be a problem if you've been going to that same restaurant every Thursday night with your friends, right? That happens to be on the second floor. You're not able to do some of those things that you've grown accustomed to. That you like doing. So I think that those kinds of frustrations that people encounter, um, change always is difficult. I think for just for human beings psychologically in general. So I think while those things are understandable, the problems really come in when assumptions are made that that's the only thing that you should want, that that's the only way that it should be. You know, disability has existed since time began. People have always become injured. Illness has been with us, wars have been with us. And so to think that disability could be completely eradicated, um, I think is a fantasy and it does a disservice to those folks who have lived their lives as disabled people. So, we're not denying the reality that people with or, or in situations like Maggie brought up. But what we're pushing back against is that assumption that either you have to be disabled or not and that there's a wide range of variation in the middle there.

Kate Archer Kent: 13:45 In a World Health Organization report on the global state of disability rights, the late British theoretical physicist, Stephen Hawking wrote about a shared moral duty to remove barriers to participation for disabled people. He addressed the United Nations and supportive a treaty called the Convention on the rights of persons with disabilities. We're talking about the language we use surrounding disability here on the morning show, Lawrence Carter-Long stays with us. He is communications director for the Disability Rights Education &

Defense Fund. He heads up the groups, Disability and Media Alliance Project which promotes accurate representation of people with disabilities and film and media. You can join in with your insights, your questions, your experiences. Eight hundred 64 to one, two, three, four. What is the media getting wrong or right about disability? Do you think we have a tendency to regard disability as a bad thing? If so, how do we get past it? Just discuss call in, tweet us. We'll get back to the in just a moment here on the idea's network.

Kate Archer Kent: 15:00 When the major news outlets reported the headlines, a physicist Stephen Hawking last week, they used words like wheelchair bound, so we've been talking. CNN hocking overcame a debilitating disease. Fox News hacking was paralyzed, but making constant contributions. NBC is wheelchair. Didn't keep him from living a full life or having a conversation about the language surrounding disability on the morning show. I'm Kate Archer Kent. Lawrence Carter-Long works on this a lot. As communications director for the Disability Rights Education & Defense Fund. He heads up the disability rights as a Disability and Media Alliance Project there as well. You can join in 806 four to one, two, three, four. Are you a person with a disability? If so, what do people say to you that you wish they wouldn't? What do you wish they'd say instead? And how do we foster better discourse about disability? Collin email ideas at w p, r.org. Let's go to Mckayla now. Waiting and Seymour. Hi Makayla,

Kate Archer Kent: 16:10 go ahead.

Speaker 4: 16:11 OK. Um, I have a service dog with me. Um, I have a couple more psychiatric disability of PTSD and a couple of anxiety disorders. Um, I normally take him out with me when I go in public and I get a lot of people telling me that, oh, is that dog in training for someone with like, no, that dog is for me. Um, and they're like, oh, well you don't really look disabled, you don't look like you need a service dog. Uh, I get that a lot actually. So it's pretty frustrating because I didn't really know that, you know, being disabled had a certain look to it.

Kate Archer Kent: 16:48 How do you respond in those situations?

Speaker 4: 16:51 I just kind of am like, oh, OK, you know, I normally just like, no, he's actually from me. And then the look on their faces are kind of like in awe. Like, wow,

Kate Archer Kent: 17:05 mckayla, thank you so much for bringing this up. Lawrence, what do you make of that?

Lawrence Carter-Long: 17:11 I try to throw, you know, ask a few questions of my own. When those situations happen. I have a mobility related disability called cerebral palsy and it's more obvious when I'm walking. I'm very obvious when I'm walking, it's not obvious at all if I'm sitting down and I've had similar reactions when I stood up when at a restaurant or a public place and then gotten up to, to move and people have been sort of shocked to see the way that I move. When they respond in those ways and I, I think sometimes they do it mistaking that they think they're being flattering in some way and so when they say, “Oh, you don't look disabled to me,” I try to just kind of open up the space for them to think about it a little bit more broadly by asking questions like, well, “what does a disabled person look like?”

Lawrence Carter-Long: 18:00 “What is a disabled person? Is a disabled person the war veteran coming back from Iraq or Vietnam who has traumatic brain injury or PTSD a disabled person? Does a disabled person kook like your grandmother who is, you know now using hearing aids or possibly has had a hip replacement? Does a disabled person looked like your niece or nephew that was born with Down syndrome or with autism and just kind of give that a moment, give that a beat, so that people can stop and think because the assumption seems to be that, well, that disabled means unable or something and people with disabilities aren't out in the world living their wives in the way that she described and that's clearly not the case anymore. You know, people are not stuck in institutions to the degree that they were, people are not stuck in nursing homes. We see groups like ADAPT out fighting on the streets right now to make sure that people with disabilities are living in the community alongside their non-disabled peers. But I think those notions about what disabled people are able to do or aren't able to do or who had disabled person is our very pernicious and they tend to stick and people assume them, they adopt them. They walk around with them without even really thinking about it, which is why it's important to confront those ideas.

Kate Archer Kent: 19:17 Micaela, thanks so much for the call and Lawrence, service animals have also come under fire in this conversation to people having very specific ideas about what service animals do and what they are for perhaps, you know, not seeing beyond dogs, right?

Lawrence Carter-Long: 19:34 The notion used to be just seeing eye dogs. Those are the only types of service animals. Right. And those were a very specific

need that people who have visual impairments or who were blind, would use. Since that time, in the last few decades, service animals have grown to include more, you know, like, like Mckayla was talking about, emotional service animals and they're, there still remains a lot of confusion about which animals are, what, you know, what type of training is required, what isn't required. And uh, you know, we're, we're probably going to continue to encounter those for quite a while.

Kate Archer Kent: 20:08 Let's go to Kelly now joining us from Whitewater. Hi Kelly.

Caller: 20:14 I just wanted to congratulate you for bringing this up. It was legally blind. I don't know how to word it, but people are not always the best at dealing with people with a disability.

Lawrence Carter-Long: 20:39 Yeah. What would you like to be different, Kelly?

Caller: 20:42 I would like to see people talking to me, not to the person I'm with.

Kate Archer Kent: 20:50 Oh, they. They often see you in the third person or talk over you or not talk directly to you.

Caller: 20:57 Right.

Kate Archer Kent: 21:00 And does this happen a lot?

Caller: 21:03 Not a whole lot, but once in a while.

Kate Archer Kent: 21:08 How do you respond?

Caller: 21:10 I just quickly get my answer before the other person to answer for me.

Kate Archer Kent: 21:19 Kelly, thank you so much for calling in Lawrence. What do you make those situations not addressing the person directly?

Lawrence Carter-Long: 21:28 I think that shows how we tend to, you know, and it is a throwback to telethons it's a throwback to what, you know, possibly medical professionals, possibly social workers, possibly teachers or maybe even preachers and sort of taught us to do when not confronted with this. I think people make those assumptions that disabled people don't make their own decisions about what they want to eat. Even in restaurants and so I've had people even in my own life, turn to someone that I'm dating and a date and asked them what I want for dinner. You know, and, and, and, or response would be, well, why don't you

ask him, he can answer himself. I think people, you know, aren't malicious. The strange thing about the, our notions about disability, people aren't trying to be malicious, but they really haven't thought these things through. Um, they haven't stopped to pause and say, how would I feel if I were in that person's situation when people ask us, you know, what is it that you folks want?

Lawrence Carter-Long: 22:28 My responses tended to be, “The same things that you're able to take for granted.” You know, if I'm talking to a nondisabled person and that means getting into the businesses that I want to shop at, going to school and getting an education, right, being able to work in the place of my choice, even getting the job interview there. Those are the kinds of things that disabled people want. And I think unless you've had a disability, it's not something that you really consider because if you're non-disabled very often you get to take those things for granted.

Kate Archer Kent: 22:59 Let's go to Tara now in Madison. Hi Tara.

Caller: 23:04 Hi, it's Tara.

Kate Archer Kent: 23:05 Tara, you're on. Thank you.

Caller: 23:07 Thank you for taking my call and I was just curious listening to this, um, the language of disability and how it might be influenced or exaggerated I the media in terms of public image, I think about that a lot with my daughter's growing up in society with the certain look with models and things like that and um, and I wonder if it has anything to say about that. Um, and then the second part I grew up with my, my father has always had a glimpse of Vegas, six inches shorter than the other and so he's always had a limp. And I think about how he was always. He didn't, he didn't want to be labeled the fabled. He didn't want to be labeled handicapped. He always, um, wanted to be able to do things normally and his accident happened in high school, but that's that whole body image and what a man is supposed to be able to do and how they're supposed to interact with their kids and be in society. I think that always really affected him quite negatively.

Kate Archer Kent: 24:10 Sarah, thank you so much, Lawrence. Yeah, body image and media.

Lawrence Carter-Long: 24:16 That's absolutely true. You know, once upon a time, um, as we talked about at the very beginning of the interview, when you heard the words disability, they were really in connection to

somebody that had, had been injured, let's say it was, you know, a, an injury from returning from the war or somebody who had been injured in the workplace, Workman's comp or disability or things like that. And even with government assistance, it was social security disability insurance. Those things were often talked about within the context of somebody not being able to do something. You got disability because you were no longer able to work even though that's not a complete fair and accurate, nor read nor accurate representation of what disability means. This, if you look at the, the prefix dis, it means apart from and, and so if the word, I think the prefix is much more robust than we give it credit for.

Lawrence Carter-Long: 25:17 The assumption is that ‘dis’ is the synonym for un or not. It actually means apart from. So to my mind, that means we're apart from limited notions of what ability is supposed to be. We haven't been taught that by our English teachers of course, so these notions persist. At whatever point in time in somebody's life they encountered disability. That's the notion that tends to stick with them. I was born in 1967, so in my lifetime alone, while my condition hasn't changed very much, I've been called handicapped, I’ve been called handi-capable. I've been called differently abled. I've been called a person with a disability. I've been called a disabled person. These things keep changing about every decade or so and I think it's a really important and really useful to go back and revisit them, to think about them every now and again.

Lawrence Carter-Long: 26:12 We don't call people with intellectual disabilities feeble minded anymore and that's for good reason. People push back. There's a whole push now among folks in the, in the intellectual disability community to say don't use the word retarded when referring to an individual and they're replacing that with other words like respect. And I think the first and foremost what we, what we have to do is kind of examine where those assumptions come from, how assumptions change. The place we’re at in society now … is an interesting time I think because if you would say to someone that race doesn't matter or that they should see the person, not the gender, you'd probably get called out, right? Someone would say that you're being either naïve or ignorant. Similarly, I think if we suggested disability is just a difference and it doesn't have any sort of impact on a person's life is a very privileged position to take. Most disabled people don't have the luxury of erasing their condition. And I think that that to erase it or to minimize it or to push it aside really flies in the face of reality and it minimizes the lives, the discrimination experiences even… like we were just talking about in the restaurant that disabled people face. So what's

more important to bring it up and to talk about it and to be honest about it,

Kate Archer Kent: 27:40 We're talking about the language of disability here in the morning show. Lawrence Carter-Long is with us, his communications director for the Disability Rights Education & Defense Fund. He also directs the groups Disability and Media Alliance Project, which promotes accurate representation of people with disabilities. Works to eliminate stereotypes about disability in news, film, TV, other media. You can join the discussion. Eight hundred and 64 to one, two, three, four. What is the media getting wrong about disability? Do you see specific things, insights that you think could change or perhaps something hopeful that you think could bring a difference in how we frame disability? Eight hundred 64 to one, two, three, four. Let's go to Joyce now in Mequon. Hi Joyce.

Speaker 7: 28:30 Hi. I'm also a registered nurse. And I also do home care. I have a daughter who has Down syndrome and uh, we'd been velcroed together for a long time. Um, and she, I think disability is on a continuum, a as far as functioning goes, just the rest of the way. The rest of society is where members of the National Down Syndrome Congress based in Atlanta. We've learned a tremendous amount from them through the years they consider in terms of language that uh, everybody is differently abled and we go for that. My daughter is very funny. She's smart, she plays piano, she's happy all the time. She likes to joke around and I've also taken care of a number of patients over the years. One in particular, how do Shane's muscular dystrophy who is very much still in my heart. And uh, he said he was diagnosed when he was five years old, went on a ventilator when he was 14 and I met him when he was in his early twenties.

Speaker 7: 29:39 And I said, you know, I said, every time I come over here, I said, you're always so happy. I said, how did you get that? And he said, well, when I went on a ventilator, I figured I had two choices in life. I could either be happy or I could be unhappy. And he said I chose to be happy. He also loved challenges. He was smart. He was also funny in spite of the fact that he couldn't speak uh, well at all and he certainly couldn't move around. So I just wanted to add those to the discussion. And I love this program.

Kate Archer Kent: 30:15 Thank you so much. And she mentioned early on their disability is on a continuum. Her daughter focuses on words like differently-abled Lawrence.

Lawrence Carter-Long: 30:25 Yeah. And there's, there's, you know, there's, there's, there's a variety of different opinions in the disability community about that. Like I said earlier, we're not a monolith. Not everybody agrees on the same thing or uses the same things. Concerns about phrases like differently abled, I think arise around what they unintentionally tried to do. If you say that someone is, is differently abled or physically challenged or whatever the thing might be… again, the concern comes from erasure. The law of the land to protect people with disabilities is called the Americans with Disabilities Act. It's called that for a reason. Um, if, if, you know, so there are people that would, that would push back against phrases like differently abled by saying, wait a minute, I am part of the disability community. And I’m not afraid to say that.

Lawrence Carter-Long: 31:19 There are millions of us. I am a disabled person or am a person with a disability. I don't need a euphemism, I don't need to use a word that tries to tap dance around it or sugar-coated or be something else. I'm not ashamed of who I am and don't try to tell me that I should be. And so, you know, the, the thinking there I think comes from phrases like let's say that one of the phrases is been in vogue recently has been “special needs” and, and there's a lot of pushback against “special needs” because people will say that a need like getting an education, like going to work, like being respected isn't special if other people get to take the same thing for granted. If you say that a student has special needs, then you're putting the onus on the student themselves, not the school that needs to give the accommodation, not the system that needs to recognize disabled students need to be in school. You kind of put that emphasis, that onus, the responsibility, for whatever it needs to get done on the student itself. And what we're saying is let's not do that. Let's put it back on society and make sure that the laws, the, uh, the, the processes that we have, the that we have or inclusive for everyone.

Kate Archer Kent: 32:41 Joyce, thanks. Let's go to Dan now in Milwaukee.

Caller: 32:46 All right. Good morning. Morning. I'm happy that you have this. I think Erin, particularly now I'm somebody who doesn't see him that often. How I characterize things I don't see as one of the facets of my personality, of my being. Um, uh, there certainly are situations where I clearly am disabled. Things that I do. I, I was downhill skiing recently. Well, I'm disabled. I needed a guide. I'm on Thursday morning. I'm facilitating a group discussion or it's just not a relevant issue at that point, so that idea when we get into representation, I find sometimes people fixate on one thing, in my case blindness and for example, I just

had somebody recently point out that a Facebook post that I'm blind and my wife added to that comment while he's also left-handed because both were fully relevant. Something that maybe can speak to here is areas that my wife has posed and I agree with, is that people seem to fixate on how the disability they see in front of them would affect them and then therefore assume, no, I must be just paralyzed by my blindness because if they were blind they would just, you know, they fall into a lump on the ground...

Kate Archer Kent:: 34:30 Well, Dan, thank you so much for bringing this to the conversation. Lawrence, your insights.

Lawrence Carter-Long: 34:35 Yeah. I would say, well Dan, you've probably had some practice being a person who doesn't see, am I correct?

Caller: 34:41 Correct. Yes.

Lawrence Carter-Long: 34:42 Yeah. So, you know, what that shows I think is that human beings, human beings have a remarkable ability to adapt, um, that we're able to do, you know, obviously if someone has been cited for let's say, an early part of their life and then they, they become a person who doesn't see that initial change. Transition is going to be something of a shock. It's going to take some time. It's going to take some work. No one is kidding anybody. In saying that, that is anything that's going to be easy. What I, it seems that people fail to recognize however, is that that transition is possible. That, that we can indeed do it and, and we're able to do it more and more. I think I'm not wanting to generally give advice, but, but if I, if I were to give some advice to those folks who are new, we disabled or who have a family member, I'm born into their family who is disabled, the best thing that they could probably do is get to know other disabled people.

Lawrence Carter-Long: 35:42 There are folks out there that have for decades been traversed this terrain that wasn't built with them in mind who know how to do it, and I was 35 years old before I sought out other disabled people and I often wonder as somebody who's at the ripe old age of 50 now what I would have learned and how much further along I'd be in my evolution if somebody had taken the time for me to get to know more disabled people when I was younger so that I wouldn't have those same frustrations that I had to figure out on my own. There has been a tendency… I don't know that it's quite the same now, but certainly in the 1970s when I grew up to try to be as, and I'm doing air quotes now to be as “normal” as possible. What that

did is it kept me from getting to know other disabled people and it kept me from learning some of the things that I probably should have learned earlier. Now with the rise of the Internet it is different,

Lawrence Carter-Long: 36:37 there are easier ways for people to be connected with other folks who have some more conditions or similar ways of thinking from around the globe. We don't have that same kind of isolation that we use to have and people are finding more and more that disability, while it used to be thought of as just a diagnosis, these days, it means much more. It can be an identity. It can mean constituency, if you're talking politics. It can mean culture and more than anything else, I think it means community, that there are people together, there are more than one of us out there, that we're not in this fight alone and that we can learn from and do learn from each other.

Kate Archer Kent: 37:16 In light of the death last week of famed physicist, Stephen Hawking, people are calling out tributes that contain ableist language and what one disability rights blogger described as inspiration porn among the social media posts are references to his use of a wheelchair and his ALS diagnosis. We're talking about the language of disability here on the morning show, Lawrence Carter-Long as our guide. He's Communications Director for the Disability Rights Education & Defense Fund. You can join in at 864 to one, two, three, four. Do you see specific things that could change or perhaps something hopeful that you think could make a difference in how we frame disability, how we talk about it? Call in, tweet us. We will return to the conversation in just a moment here on the idea's network.

Kate Archer Kent: 38:27 In the US, one out of every five adults has a disability. That's according to a study published in 2015 by the Centers for Disease Control and prevention. Well, policy changes have helped people with disabilities participate more fully in society. There are still having to actively fight bias day in, day out. We're talking about the language surrounding disability here in the morning show. I'm cater. Sure. Kent Lawrence Carter Long is with us. He's communications director for the disability rights education and defense fund directs the groups, Disability and Media Alliance Project. You can join in. Do you think we have a tendency to regard disability as a bad thing and if so, how do we get past that? How are, are you a person with a disability? If so, what do people say to you that you wish they wouldn't call? An 864 to one, two, three, four. Tweet us w mornings. Let's go to John now in Lacrosse. Hi John.

Caller: 39:29 This is what you're looking for. What? I'm on disability and mine started. It's a neurological situation and then third, like in 1995 and 2012 I had to go on disability because I couldn't hold my jobs anymore. No, I don't think people realize what you give up from people to go on disability because I'd never be able to do any medical stuff or anything if I wanted because I would never get insurance. Um, no I, I fought with it. I worked with it all the way until 2012 where I just couldn't do it anymore. And my doctors told me it'd be a good idea. I just recently had someone telling me, you know, you're on disability, Ross volunteers overhead research because she's still working… You know, you know, people don't realize that you'd give up because I was going to be a supervisor, but they couldn't do it because I'm just too much work. They kept me on, but I just didn't get the position that they're offering. I just want him to bring that up. I don't know if that's what you're looking for,

Kate Archer Kent: 40:33 John. Thank you.

Caller: 40:35 Happy.

Kate Archer Kent: 40:35 Yeah. John, thank you for bringing this to the conversation. Lawrence, what do you make of this?

Lawrence Carter-Long: 40:41 Yeah, I think it goes to show some of, some of the assumptions that are out there about, you know, disability that um, uh, that might be obvious, more obvious like mine or somebody who might have a sensory related disability. Somebody who might be blind. You know, there are a number of individuals though where not all disabilities are quite as obvious as that. There are hidden disabilities that we don't often see and we shouldn't make assumptions about people based on what we don't know about them. And I think those things really hinder us. Not only individually because of the opportunities that we don't get, but as a society because people, we don't learn from those folks who have learned to adapt, who have learned to, to work with their disabilities and indeed work in a world that wasn't built with them in mind and we often take those talents and, and, and don't recognize them. And when everyone is not included, then everyone cannot benefit.

Lawrence Carter-Long: 41:37 One thing I've learned from 15 years of working in the community and, 50 years of being a disabled person is that disabled folks are masters at improvisation were really, really good at figuring out how to get things done because we have to do that on a daily basis, right? We have to figure out how to get in the building, how to get to the location, how to get around

those obstacles that are put in place for us even without people realizing it. And I think if, if we were able to recognize that skill set is something that a lot of disabled people have add to, to really develop as a result of necessity, we'd all be much better off. You know, um, you no one is harmed when we create an accommodation when we make the world accessible.

Lawrence Carter-Long: 42:28 Those ramps out there that are on the streets. Um, um, curb cuts, you know, weren't used for many, many years. Then people went to court. Laws were passed, legislation was passed. Now, who doesn't use a curb cut? We've got people that use baby strollers. We've got people with rolling luggage, even pretzel vendors in major cities are happy that we have the curb cuts. When we started texting on our phones, that was developed for people who were Deaf. When I first got my cell phone, I never thought I'd text. I text now more than I talk. I might telephone. Those are technologies that were developed specifically for disabled people in the entire world has benefited as a result. We need to see that and we need to understand that everyone benefits when we make the world more inclusive.

Kate Archer Kent: 43:14 If you have questions about someone's disability or the terminology that they prefer is a kosher, is it OK to ask?

Lawrence Carter-Long: 43:23 Again… Opinions are going to vary. Not everybody feels the same way, but I would say taking the pulse and the consensus of folks in the community that I know we much rather that you asked. You know, some days you just want to go to the grocery store and you don't feel like a bunch of questions. Other days you're going to feel like having a conversation with that person sitting next to you. It's definitely worth asking rather than wondering.

Kate Archer Kent: 43:50 Let's go to Jackie in Appleton. Good morning, Jackie.

Kate Archer Kent0: 43:54 Hi, good morning. I'm a sign language interpreter and I work with people on a regular basis and I feel that they're often misunderstood. A lot of them probably don't even realize this. I talk about it and they look at you like, what's that? Because obviously the 10 years, so they don't listen to the radio in the morning, but it's a law enforcement of the deaf client that I work with tend to view themselves as if they do not have a disability. They simply speak a different language. And we use in the deaf community, I capital “D” Deaf to symbolize pride. They're usually proud of who they are and they like to use that letter instead of [inaudible] usually refers to people who are elderly and have lost their hearing. They're used to hearing and

they feel more like they have a disability. Capital “d” Deaf is usually for people who are, um, only that, um, they're used to having to accommodate, um, in other ways. And they, they really truly know ourselves as having a disability… Like I said earlier, they're very, very, very proud of their culture. And it's a, it's a wonderful culture to be able to be a part of.

Kate Archer Kent: 44:58 Jackie, thank you so much.

Lawrence Carter-Long: 45:05 We celebrate Deaf culture and Disability culture, but that doesn't mean the people who are Deaf don't deserve to have captions on television shows that they watch or the movies that they're going to. Everyone needs accommodations, so whether one identifies as disabled or identify as Deaf, I think we can all agree that what we, the what we need in our culture and our society is inclusion of everyone. We don't want anybody left out.

Kate Archer Kent: 45:39 Well, certainly as we see the Paralympic Games, many stories are written about the athletes who performed and succeeded there, but certainly disability comes up in those stories, how they're framed and, and how they're written. So how do you write those stories and make sure though that it's the, the, the, the framing is in the right place in terms of that person's disability and, and the reason to why they're competing in the Paralympic Games.

Lawrence Carter-Long: 46:13 I think probably the best thing to do for any writers out there and the editors are any reporters, anybody really talking about these issues is stay away from words that are problematic like overcoming or someone who is struggling with their disabilities. Someone who is a victim of their condition, you know, it's much easier to say someone is a wheelchair user. That's something that's absolutely the truth that no one's going to have an issue with. Um, you know, people would have said that people struggle with cerebral palsy. I don't struggle with cerebral palsy. In fact, I swagger with cerebral palsy. I know friends who sashays with multiple sclerosis, right? So I think the first thing we should do is allow for some variability. Ask the person how they would like to be described. That's always a good process going forward. And then strive to use language that doesn't minimize, that doesn't discount, which doesn't make someone a victim or that doesn't patronize.

Lawrence Carter-Long: 47:10 That's most important. Show the person that you're writing about, or the community that you're writing about or talking about with respect. We have three simple rules for writing or

talking about disability. One is steer clear of euphemisms. Just say disabled. You can say person with a disability, you can say disabled person, but just say disabled. Everybody kind of knows what that means. There won't be any confusion around that. Remember that language is always evolving and so make sure that yours keeps evolving too, ability is not the opposite of disability, so don't treat it like it is. And I think the other thing is just try to keep it simple, whether it's a person first or prefix first. The law was called the Americans with Disabilities Act for a reason, using phrases like exceptional abilities, which kind of sounds like riding a unicycle while juggling is no doubt impressive, but it is also confusing to people. So I think the best thing we can do is sort of keep it simple, keep it direct and make sure that everyone's included.

Kate Archer Kent: 48:07 Well, Lawrence, thank you so much for joining us.

Lawrence Carter-Long: 48:09 Thank you. Thank you, Kate. I really appreciate you having me on and for having this discussion.

Kate Archer Kent: 48:13 Lawrence Carter Long, is the Director of Communications for the Disability Rights Education & Defense Fund and the Director of the group's Disability and Media Alliance Project. This hour of the morning show was produced by Chris Molina and [inaudible] Michael, daring or provide a technical direction. Michelle Johnson is executive producer. I'm Kate Archer Kent your and you find this conversation on the idea's network.