The Georgetown University According to the US Census Bureau, 54 million Americans have a Center for Child and disability, representing 18% of the population. Between 1990 and 2000, Human Development the number of Americans with disabilities increased 25 percent, http://gucchd.georgetown.edu outpacing any other subgroup of the U.S. population. With an
aggregate income of $1 trillion and $220 billion of discretionary spending, people with disabilities are an often-ignored market.
Media, especially news organizations, has the ability to raise awareness, clarify information, and educate the public on issues as diverse as The School of Continuing foreign policy and fashion. Although mass media has the potential to Studies, Journalism “socially construct images of people with disabilities” positively, in reality The Master of Professional Studies in it often perpetuates stereotypes by depicting individuals with disabilities Journalism degree program as dependent, helpless, burdens, threats, or heroes. According to the Special Olympics more than 80% of US adults surveyed felt that media portrayals were an obstacle to acceptance and inclusion of people with intellectual disabilities.
This symposium explored issues related to the representation of persons
with disabilities in the media and how this representation influences the public’s attitudes and perpetuate stereotypes, which in turn influence
decisions regarding school placement, employment opportunities, Proceedings Edited By: housing choices, use of public transportation, access to health care, Pamala Trivedi, PhD, NCSP and a host of other activities, programs, and supports that are available & Toby Long, PhD, PT, FAPTA to all citizens.
Symposium Agenda
12:00 Welcome Toby Long, Associate Dean, Disability Studies, Georgetown University, School of Continuing Studies Associate Professor, Department of Pediatrics, Georgetown University Medical Center Director of Training, Center for Child & Human Development
12:15 A Mother’s Perspective Judy Woodruff, Senior Correspondent for the PBS Newshour
1:00 Panel Introductions
1:30 Discussion Leon Dash, Swanlund Chair and Professor of Journalism, University of Illinois at Urbana-Champaign
Tawara Goode, Director, National Center for Cultural Competence, Georgetown University, Center for Child & Human Development
Beth Haller, Professor, Mass Communication & Communication Studies, Towson University
Deborah Perry, Associate Professor, Department of Pediatrics, Georgetown University, Center for Child & Human Development
Nolana Yip, Adjunct Professor, Department of English, Georgetown University
Jody Wildly, Diversity Program Manager at the Office of Diversity, Management and Equal Opportunity at the Department of Health and Human Services
3:00 Future Directions Toby Long
Framing Disabilities Symposium Proceedings 2
Welcome Toby Long, PhD, PT, FAPTA
s the host of this today’s discussion I welcome you to Georgetown University on this beautiful June afternoon.
!" !A few years ago in 2004, the President of our University, Jack DeGioia, instituted a university-wide program, the Reflective Engagement Initiative. This Initiative promotes Georgetown as a forum to bring together “authentic dialogue, helpful methodologies, and multiple perspectives” to bear on socially significant issues. The Reflective Engagement Initiative hopes to engage public discourse on subjects that are important in improving society, not only in the District of Columbia, but throughout the nation and the world.
Together with my colleagues from the Journalism Department within the School of Continuing Studies, we were fortunate to receive funding from the President’s office to initiate this symposium to explore issues about the media’s representation of people with disabilities. We hope that this afternoon will be just the beginning of a stimulating, ongoing conversation about how we as disability advocates, disability service providers, individuals with disabilities, scholars, and journalists can work together to promote stories and highlight individuals with disabilities in the media that are positive, accurate, and honest.
Before we begin, I’d like to thank the special people who over the course of this year have supported me in bringing this afternoon’s activity to fruition. First, I want to thank my very special colleagues from the Center for Child and Human Development, who are always on the cutting edge of making a difference for people with disabilities and special health care needs in the District of Colombia, in our region, our nation, and around the world. I’d also like to thank my new friends, Barbara Feinman-Todd and Jackie Sanders from the Journalism Program, who were willing to try something very new, collaborate with a new group of colleagues and in the process develop some new cross- campus friendships.
Framing Disabilities Symposium Proceedings 3 WELCOME
the views of young Americans “Today we want to engage you in asking called, Generation Next: Speak- Up, Be Heard. Through the fall of us questions and in just talking about this 2006, Judy was a visiting professor at her alma mater, Duke issue and how we as advocates, University, Terry Stanford Institute of Public Policy, teaching a weekly providers, and journalists can work seminar course on media and politics. Prior to that in 2005, she together building a network that was a visiting fellow at Harvard University’s Joan Shorenstein promotes open, honest depiction of Center on the Press, Politics, and Public Policy, where she led a individuals with disabilities in the media.” study group for students on contemporary issues in journalism. And finally, if that’s not enough to We are hoping that the agenda for reason, objectivity and journalistic keep a mother of three busy, she is this afternoon will stimulate a rich honesty for the past 30 years. the founding co-chair of the conversation leading to an on-going Since 1977, when she served as International Women’s Media problem-solving relationship NBC news White House Foundation, an organization among us all. Following our guest correspondent, through her years at dedicated to promoting and speaker, Judy Woodruff, we are CNN with her weekday political encouraging women in going to have a panel discussion program, Inside Politics, her communication industries that we really want it to be a anchoring of the award winning worldwide. She serves on the discussion—today we want to weekly documentary series, Board of Trustees for the Freedom engage you in asking us questions Frontline with Judy Woodruff for Forum, the Newseum, Global and in just talking about this issue PBS, to now as senior Rights, Partners for Justice, The and how we as advocates, correspondent for the News Hour Knight Foundation Commission on providers, and journalists can work with Jim Lehrer, Judy Woodruff Intercollegiate Athletics, the Board together building a network that has played a central role in of the National Museum of promotes open, honest depiction covering our nation’s politics and American History, and is a Trustee of individuals with disabilities in major news stories. In addition to of Duke University. the media. her day job, she also anchors a monthly program for Bloomberg It is my pleasure to welcome our Judy Woodruff, and for most of us television, Conversations with guest speaker, Judy Woodruff. in Washington, Judy needs no Judy Woodruff, and in 2007, she introduction, has been a voice of completed an extensive project on
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Keynote Speaker Judy Woodruff
Framing Disability: A Parent’s Perspective
hank you Toby, I am so glad to be here with all of you on this gorgeous, almost summer day; and delighted to be at this wonderful university, Georgetown. No, I didn’t go to school here, but I live just a !"mile! or two from here, and this is neighborhood for me, so I’m really thrilled to be here back on campus. I will tell you that as I look out on this audience. Some of you I don’t know, but I do know some of you and I want to recognize some good friends who are out there. Quinn Bradley, a very dear friend who has just written a book about his own challenge with his own disability and started a wonderful website (www.friendsofquinn.com), which I hope all of you will check out, and his mother who needs no introduction, most of you know Sally Quinn, who is of course a renowned and accomplished journalist in her own right. I’m so glad to see all of you, and I’m hoping and counting on Quinn and Sally and any other of you who have the kind of experiences that I know you have had to participate in this conversation that we’re going to be having.
I would like to tell you, there’s nothing going on in the world of news today, but of course we know that’s not the case. They’re counting the ballots, or maybe they’ve quit counting in Iran. The president at this hour is making a speech to the American Medical Association in Chicago where he’s beginning to roll out his healthcare reform plan. We’ll all know a little bit more by the end of the afternoon about what form that’s going to take. And healthcare of course is something that all of us, whether we cover it or not on a day to day basis pay very close attention to, it affects all of our lives, and especially those of us who have a particular interest in disabilities. I want to congratulate Georgetown and the Center for Child and Human Development for sponsoring this symposium and for addressing the issues that you are focusing on.
Framing Disabilities Symposium Proceedings 5 KEYNOTE ADDRESS
its two conflicting impulses: week in August, the second week wanting to be as objective and fair in September? Well, the concerned “For me it is two as I can as a journalist, but on the look on the face of the lab other hand, living the life through technician was the first sign that conflicting my son, someone with profound something wasn’t right. We had disabilities. gone in, as I say, it was routine and impulses: wanting he called in a colleague and then I don’t have to tell you all that as they proceeded to tell us something to be as objective somebody who has lived with this we didn’t understand. They were for 27 years, I do have strong using words we had never heard and fair as I can feelings and there are two parts to before. Hydrocephalus, I had this story, because there have maybe heard a little bit about spina as a journalist, but really been two parts to Jeffrey’s bifida—I had never heard the word life. He was born 27 years ago spoken. For the next month, my on the other with a mild disability, the birth husband and I essentially went hand, living the defect spina bifida. And then when every few days for an appointment he was 16 years old, there was a with a doctor here at Georgetown, life through my life altering event, ironically where we found a wonderful during surgery, that left Jeffrey specialist who would guide us son, someone profoundly disabled for the rest of through the last part of my his life. If it had only been the first pregnancy and prepare us for what with profound set of circumstances, which was was likely going to happen. They more than enough by itself, I think couldn’t tell then if Jeffrey was disabilities.” I would have been aware of the going to have spina bifida, but they challenges that people with knew that there was a high disabilities face and confront, but probability of hydrocephalus, you add the second and it meant because they could see enlarged What I’m going to talk about for that we as a family live with those ventricles in the head of the fetus. the next few minutes is different challenges day in and day out— But they warned us that spina from what I usually speak about in that’s what’s pushed us to a level bifida was a real possibility. public, which is politics. Typically, of awareness well beyond anything I don’t discuss my family or my we knew before. A month later, as I came out of the son’s health challenges, and I’ll be fog of the C-section Al told me honest with you, it’s I’m going to share with you a brief that indeed Jeffrey did have an uncomfortable for me in many version of Jeffrey’s story and try to opening in his back, an opening of ways as a journalist to speak about answer a few questions with you. I the spinal cord to the outside, something that is so personal. It’s don’t pretend to have answers to meaning he did have spina bifida. probably because it is impossible the important questions that you’re And it meant, surgery at 15 hours to be objective, or dispassionate on going to be asking here, later on old, to close the opening. The next this subject, which is what we are this afternoon. I think these are the afternoon, a doctor was there to do supposed to do as journalists. It’s a right questions to be asking, but the surgery that would essentially deeply emotional subject for me. perhaps we can get some of the give Jeffrey the kind of a chance When you know somebody so conversation started. Twenty- that children up until just a decade well, especially your own child seven years ago in 1981, I was 8 or two before Jeffrey was born who lives a different kind of life months pregnant when I went in didn’t really have. They didn’t because of their physical for a routine sonogram. My really perfect this surgery to the differences or their emotional husband, Al Hunt, was with me. point where it could make a differences or whatever it may be. Like the good journalists that we difference in people’s lives until And you see first hand what they were, we wanted to know exactly the late 1960’s and early 70’s. So, go through, in a way it’s hard not when our first baby was due. We I kept thinking if Jeffrey had been to speak out for them. So, for me wanted to know was it the last born a few decades earlier, it might
Framing Disabilities Symposium Proceedings 6 KEYNOTE ADDRESS have been a very, very different second grade where all the kids Food and Drug Administration, story from what happened. were asked to run 3 or 4 times when at the end of 10th grade, his around the school yard and Jeffrey physician said that the shunt that We spent a week in the hospital came in dead last, behind all the he had had for 16 years, which had and came home to all sorts of dire boys, and behind all the girls. But given him no problems, needed to predictions from doctors. Although he had a big smile on his face, he be replaced. It was not something the opening in Jeff’s back was low was glad that he had gotten through that Jeffrey wanted to do. Two meaning minimal nerve damage it. And of course, inside my heart weeks later the new shunt, which there was still no guarantee of was breaking, but he betrayed no they had had difficulty putting in, what damage did or did not occur. real discomfort over that. failed. Long story short, he went Over the years we made lots of back into the hospital, they did a doctor appointments; saw a lot of Although Jeffrey’s motor different procedure, and it was specialists; met with a lot of difficulties were quite mild, his during that procedure that therapists. The good news is that major concern, like most something went wrong, and Jeffrey because the opening in his back individuals with spina bifida was basically came out of that a was as low as it was with minimal bladder and bowel incontinence. different person. nerve damage, it meant that Jeffrey wore a diaper until he was Jeffrey, at 13 months would go on 5 years old when he learned to He came out of surgery in a coma, to walk, pretty much on time, and catheterize himself to empty his unable to walk, eat, talk. He stayed would go on to do most of the own bladder. Although, at times, in the hospital for a month, went things that kids can do. He did he was teased he never told us, he on to a neuro rehabilitiation have to have, at 10 months, a shunt just handled it reinforcing what hospital in Baltimore, came home put in to drain off excessive we, as parents knew, this is one five and half months later using a cerebrospinal fluid, which is seen tough kid! wheelchair, unable to use his right in 85% of individuals with spina arm, with dysarthric speech, vision bifida. Although we, as parents, Over the years we went to spina problems, poor balance and motor were frightened, Jeffrey was up bifida conferences, we went to control, and a significant loss of and bouncing the next morning. In specialists, we went to Michigan, short-term memory. He could his crib he was babbling and to California, to Massachusetts remember everything long-term, jumping up and down, with a big talking to specialists about whether he knew what had happened to smile on his face. So we came or not there was something we him, he remembered about his life, through that scary episode feeling could do about his incontinence. but if you asked him, what did you well, this is a strong kid. And there were little things, but watch on television last night? nothing that would make a big That was what he couldn’t do. As And sure enough, Jeffrey went on difference short of some very risky we grew to learn, that became an to walk on-time, he went on to ride surgery that would take him in a enormously frustrating thing and to a bike, he learned to ski, learned to different direction. this day is still an enormously swim, he did all the things that frustrating thing for him. kids his age did. He was in school, Jeffrey was a trooper, he he was at grade level in school, he participated in as many sports that That was 11 years ago, it was did well. But, the fact that there he could that didn’t involve 1998. Jeffrey went on—after was some nerve damage meant running. He got interested in missing 11th grade, to community that he couldn’t run as fast as some medicine. As he went into middle college here in Montgomery of the other kids in his class. He school, he said he wanted to be a County. Then he went to college, became quite aware of this as he doctor. At 14, he had an internship, away to college, which I can tell got older, he got to the point where at the Centers for Disease Control you has been a really miraculous he stopped playing soccer in about in Atlanta. At 15 he had an experience. Jeffrey is actually on 2nd grade, because he knew he internship at the NIH (National track to graduate from college this couldn’t keep up with the other Institutes of Health) here in December with a lot of help from kids; with the other boys. I have a Washington and then he was just tutors, and caregivers, and others. poignant memory of a foot race in about to start an internship at the He’s been going to a school in
Framing Disabilities Symposium Proceedings 7 KEYNOTE ADDRESS
North Carolina, St. Andrew’s, and who looks different, or sounds Al, but it also involved his younger only has one more semester to go. different, or seems different in brother and sister, Ben and Lauren It will be 8.5 years—its some kind some way that they’re just not as well. Our journey has been, it of a record, but as we always taken into account. There are continues to be, a long and knew, he is a trooper. He’s kept a celebrated exceptions, the winding road with plenty of rocky, sense of humor, amazingly, Christopher Reeves, and the uphill climbs. A lot of twists and through the whole thing, they call Steven Hawkings, and people like turns and profoundly frightening him Mr. Personality at school, he Marlee Matlin, who are heroes in moments. Quick trips to the wants to get to know everybody, their own right for what they’ve hospital because Jeffrey took a whether they want to get to know done, and for what they continue spill, fell out of a wheelchair. For him or not, he wants to talk to to do. But for most individuals example, the day after we left him them. This summer (summer of with disabilities, even though we at college he was talking to another 2009), Jeffrey is going to a live in a country that is arguably student in a wheelchair, they were program, a long way away from ahead of the rest of the world, on their way to lunch, and Jeffrey here in Bakersfield, California; a when it comes to awareness and just didn’t look and his wheelchair special program, specifically accommodations, individuals with tipped over on a curb, because designed for adults with brain disabilities still have to go through: even at this school which had injury where they try to push them repeating, ‘did you understand made accommodations, the as much towards independence as what I just said;’ doors that don’t sidewalks were so narrow that you possible. They provide intensive open or are too narrow, homes you really had to pay very, very close rehabilitation and therapy. He will can’t visit because there are too attention to where you were be there until August when he many stairs, restaurants that do not driving. Since then, from day one, heads back to school and then accommodate adequately, streets the school has required that Jeffrey come December when he in older neighborhoods that still have a companion with him graduates we will need to make don’t have curb cuts, the wherever he goes on campus, some very important decisions. impatience of people when they to be safe. This summer’s program is a really can’t understand what you’re important step. saying, and the fear that when In addition to scary moments, there’s a fire on the top of a we’ve had incredibly exciting and Jeffrey has shown my family and building, a hotel or an office uplifting moments in our lives. anybody who comes in contact building, that they won’t be able to Most always punctuated by the with him what people with get out safely. After 9/11 Jeffrey fear of the unknown, yes; but a disabilities have to contend with was very focused on the people knowledge that we’ve been given every single day. Unless they are who were carried out on the top someone very, very special in our small children and really cute, floors of the towers. Those who lives. And when I allow myself to people with disabilities are didn’t make it and those who did think about, ‘gosh, I feel sorry for basically invisible to a lot of make it because somebody was us, I feel sorry for our family,’ and people in society. People just look there to make sure they got out. I ask ‘Why Jeff?’—There’s no through them. Often when Jeffrey answer, there’s no answer to that; says something to someone, if they I guess the most basic thing that just like there’s no answer to the don’t understand what he said the I’ve learned from living with thousands of parents who ask, first time, and his speech, as I Jeffrey is the fact that he doesn’t ‘Why my child.’ But, as I say, mentioned is dysarthric, they’ll consider himself a disabled person, Jeffrey doesn’t dwell on this. We nod their head and say, ‘oh well, he considers himself a person with quickly figured out that it doesn’t that’s nice,’ and then, they’ll go on some disabilities. He will do any good for anyone in our and change the subject, rather than frequently correct someone if they family to dwell on why, and what saying, ‘I didn’t understand you.’ get it the other way around. could have been. It doesn’t get us Or, people will just not look at very far, and it doesn’t serve the him; to society it seems that there’s Our journey with Jeffrey—and I needs of the children, the young just something so unattractive want to say that it’s a journey people, and the adults who live about somebody whose different— that’s involved not just me, not just with disabilities, whether its spina
Framing Disabilities Symposium Proceedings 8 KEYNOTE ADDRESS
see, and why it is so important that their views, opinions, hopes, “Jeffrey has shown my family and dreams and aspirations are taken into consideration as we have had anybody who comes in contact with him these important discussions about how to talk about disability, how what people with disabilities have to to cover disability. Individuals in the disability community contend with every single day.” absolutely need to be part of those conversations. bifida, or velocardiofacial very, very close attention, because So, as I say, I come here today, not syndrome, which Quinn Bradley I know that if not for my own with answers, but to share our could talk about, or any of the son’s life, but for the lives of story, and to say, I’m so glad that multiple disabilities that define the others who have experienced or you’re having this discussion. lives of so many Americans. It’s will experience something like There haven’t been so many that I also why, not as a journalist, who what Jeffrey has gone through. All have been aware of as a journalist. doesn’t take side in these debates, of us who’ve lived with someone So, I’m pleased that you’re doing but as a mother, I’m able to with a disability can bring—we this, and to say, that I’m happy to celebrate when I see that more have been given a gift, and that’s be here and answer questions for a money is being spent on medical the gift of greater awareness and few minutes, and I applaud you for research. I can be happy about that, understanding of what it’s like in what you’re doing. Thank you because I know that it makes a their lives. But, its also an very much. difference. It’s also why I watch obligation that we speak out about this healthcare reform debate with what they live through, what they
Framing Disabilities Symposium Proceedings 9
Panelist Presentations
Beth Haller, PhD
r. Haller is a Professor of Journalism and New Media at Towson University, conducts research in the area of media’s representation of individuals with disabilities as well as teaches !"in the Department! of Mass Communication and Communication Studies at Towson. She began this line of inquiry while attending the University of Maryland in the late 1980s where she was fortunate to investigate the ‘The Deaf President Now’ movement that occurred at Gallaudet University in 1988. Dr. Haller received her PhD from Temple University. Currently her research focuses on media representation of disability. Dr. Haller analyzes the content of newspapers and news magazines, a little bit of television news as well. One major problem she has found is that journalists don’t talk to people with disabilities when they are doing a story about disabilities.
Prior to discussing issues related to the media representation of individuals with disabilities, Dr. Haller shared with the audience how honored she was that President Jordan* was in the audience. She “A lot of the stories explained that because of ‘The Deaf President Now’ movement she was introduced to this area of journalism, which has maintained her interest don’t have a and scholarship for over 20 years. disability perspective We have already commented about the lack of coverage of disability reflected in the issues in mainstream media. On a positive note, I think coverage is articles. To me, as a getting slightly better now with the internet. There’s a lot more people talking about disability issues through blogs and other on-line venues. former journalist, it’s For example, I have a blog that’s basically a database of disability news a big problem if and stories from around the world that I collect from all news sources that I can find on the internet. So, although I’m seeing there is growing you’re not including coverage about disability this issue of journalists not knowing where to the group that find a person with a disability to cover the issue, to get the perspective of
you’re supposed to *I. King Jordan was President of Gallaudet University from 1988 to 2006 following a week long protest, called Deaf President Now (DPN) in which students, alumni, faculty, be writing about.” staff and friends of the University, protested the Board of Trustees’ appointment of a hearing person to the presidency. The protest and the appointment of President Jordan is considered a watershed moment for the rights of individuals with disabilities.
Framing Disabilities Symposium Proceedings 10 PANELIST PRESENTATIONS a person with a disability or said, you know, if the mainstream A lot of the local, smaller papers finding a disability organization, if media isn’t going to cover our are doing a pretty good job, also. they can’t find a person with a issues, we’ll just cover it our own There was just an article in the disability, continues to be a darn self! Now with the internet Miami Herald a couple of days ago problem. A lot of the stories don’t there are a lot more opportunities about a father saying, ‘I have a have a disability perspective for people with disabilities to get child with a fairly severe disability, reflected in the articles. To me, as their perspectives out. There are and we have no money, and we a former journalist, it’s a big many really excellent blogs, where need Medicaid to cover diapers. problem if you’re not including the if somebody’s not covering the Our choice is food or diapers.’ So, group that you’re supposed to be disability component of healthcare he’s now suing the state of Florida writing about. So, that’s one big reform, people are writing about to get Medicaid to cover diapers issue that a lot of my research has what it means to their life when for his older teen daughter. So, kind of discovered. I have also home healthcare is not these are really important issues looked some at the disability incorporated into the healthcare that are gradually getting a little bit media itself. This segment of reform and what that will mean. of coverage. media is vibrant; an area where a lot of people with disabilities have
Framing Disabilities Symposium Proceedings 11
Tawara Goode, MA
awara Goode, is an Assistant Professor at the University Center for Excellence in Developmental Disabilities, which is part of the Center for Child and Human Development at Georgetown University. She is !"also! the Director of the National Center for Cultural Competence. The mission of the National Center for Cultural Competence is to increase the capacity of healthcare and mental healthcare programs to design, implement, and evaluate culturally and linguistically competent service delivery systems, to address the growing diversity that we have in the US, and to promote health equity and mental health equity. Ms. Goode’s work at Georgetown’s UCEDD, has centered on addressing the impact of culture within the context of disability, including the different perceptions and meaning of disability among different cultural groups.
There are differential experiences of diverse racial and ethnic groups within health and mental health, social service and educational systems because of their disability, and oftentimes because of their race. There are also racial and ethnic disparities among the population of people who “There are experience disability, and clearly there are cultural beliefs and practices multiple and that are related to advocacy that may differ from group to group. I’ve had the privilege of spending a lot of time on the intersection of culture, complex language, health, mental health and disability with my work with the perceptions and National Center for Cultural Competence. In this capacity, my colleagues and I work with broad constituency groups to advance and sustain experiences of cultural and linguistic competence on multiple levels and in diverse venues, including, but not limited to, policy makers, administrators, people with practitioners, consumers and families, and the communities in which disabilities” they live. This includes institutions of higher education, such as Georgetown, and the network of University Centers for Excellence that Dawn* referenced earlier. This is a focus on really preparing our future workforce and also providing continued support to our present workforce so that they are able to address this broad array of issues.
I wanted to address just quickly a few definitions or ways for us to think about culture. There are multiple definitions of culture. I’d like to share one with you that’s based on the work of Wenger (1991): Culture is a system of collectively held beliefs, and practices of a group, which guides decisions and actions and patterns in recurrent ways. It encompasses the organization of thinking, feeling, believing, valuing, and behaving collectively that differentiates one group from another.
*Dawn Rudolph, MSEd is Program Manager for the Association of University Centers on Disabilities (www.aucd.org) in Silver Spring, MD.
Framing Disabilities Symposium Proceedings 12 PANELIST PRESENTATIONS
I’d like for us to continue to think about culture within this context. We know that culture is applicable to all people, is active and dynamic, that it changes over time; it changes to meet new challenges that may present to the group. It changes in relationship of a group to other groups and it changes based on our economic, social, and political climate. We know that culture is multi-layered, we think about it as an onion, as peeling away the layers of onion. And that we see different manifestations of culture in different settings, whether it’s at home, whether it’s in a community, whether it’s within a family, or whether it’s within a professional and work setting. We know that culture is malleable over time, and it always disabilities. There’s the cultural specific disability, not necessarily needs to be considered within a context of the family: how that disability as a whole. Then we can context. Lastly, we know that family values the individual with look at the cultural context of culture structures our perceptions, disabilities—what their beliefs and various forms of media, and how it shapes our behaviors, and it practices are—all share influence. they understand disability and how really tells group members how The cultural context of individuals it’s portrayed. to behave. who share the specific disability influences the person. There’s I suggest to you that as we think So, if we think about that very, clearly advocacy groups, other about disability in the media and very broad definition of culture we shared experiences of those continue to guide our discussions, think of it within a context of individuals with disabilities. that this convergence of cultural disability. (Please see slide) This There’s also the cultural context of contexts is really very important, slide depicts a conceptualization of the community and what the public because we’re looking at culture really looking at a perception of a particular disability individual expressions; we’re convergence of cultural contexts. may be, it’s the public looking at institutional So, if we think about disability in understanding and the acceptance understandings of this; we’re particular, and its multiple of that disability within those looking at how advocacy groups manifestations, I’d like for us to particular settings. There are also perform. I must say that this is a focus on this graphic. This the cultural contexts of the complex set of circumstances for framework shows an individual associations and advocacy groups anyone to understand, and in with a disability in the center. I’d and the cadre of professionals particular journalists. And so, I like for us to think about the concerned with specific think we need to look at what will multiple cultural contexts we heard disabilities. We heard this again be our role, and continue to foster just in the presentations from Ms. earlier from Ms. Woodruff about that level of understanding about Woodruff, and also the individuals the various groups that may be the complexity and the depth of who shared with us. That there are under a particular umbrella and this issue. multiple and complex perceptions very much concerned with a and experiences of people with
Framing Disabilities Symposium Proceedings 13
Leon Dash
eon Dash is the Swanlund Chair and Professor of Journalism at the University of Illinois at Urbana-Champaign in the College of Media. Mr. Dash is currently developing a documentary film about !"the! University of Illinois’ program to support students with disabilities as well as disability in American society. Prior to taking the position at the University of Illinois he was a Pulitzer Prize winning journalist for the Washington Post. Mr. Dash explained to the audience that he took the position at the University of Illinois over three other prestigious universities because of the supports that would be available for his daughter who has cerebral palsy and uses a wheelchair. The University of Illinois, has the oldest (established in 1948) and most expansive program for students with disabilities in the United States. His daughter graduated from the University of Illinois in May 2005 with a Bachelor of Science and theater degree. She also, while there, acquired her full independence. Currently she lives independently in downtown Silver Spring, Maryland, and is doing quite well in terms of her independence, but not in the employment market.
“In 1990 when In terms of some of the things that have already been talked about, I’ve had a number of students with disabilities working for me as research George Herbert assistants. One of them is from Iraq, a young woman, a person with Walker Bush signed polio. She’s doing a Masters degree in broadcast journalism at the the Americans University of Illinois. But, she has determined in the last 6 months that she’s not going back to Iraq. She uses a crutch to get around, she’s had 3 with Disabilities operations since she’s been here—she arrived in January of last year and Act, 70% of the she had 3 back operations that have straightened out her spine. The people with results of the operations have been productive for her and very good. But she knows 1) she will never be given full opportunities as a woman in disabilities in the Iraq; and 2) she will not be considered for any serious employment United States were because of her disability. Thus she’s decided to stay in the US. So, that unemployed. tells you that relative to many places overseas, including Western Europe, the United States is a much better place for people with Today, 70% of the disabilities, but it still has a considerable way to go. people with disabilities are I had a long list of things that I wanted to talk about today, but since people were sharing their personal stories, I wanted to share mine. But, one unemployed.” of the things that I got from Andrew Imparato*, he’s the head of the
(Andrew Imparato, a graduate of Stanford Law School, is the President and CEO of the American Association of People with Disabilities. Previously, he was the General Counsel and Director of Policy for the National Council on Disability. Mr. Imparato has earned honors from the U.S. Junior Chamber of Commerce, Secretaries of Transportation and Health and Human Services, and is a member of the Maryland Statewide Independent Living Council.
Framing Disabilities Symposium Proceedings 14 PANELIST PRESENTATIONS
American Association of People she goes to the University of taxis that are wheelchair adapted. with Disabilities, is that United Maryland, where her mother She’s lucky that her parents are States is still in the Plessy v. teaches, or comes back to the able to afford that. But, if she were Ferguson period when it comes to University of Illinois, which I someone who was relying on people with disabilities. And I think is better for her.
Framing Disabilities Symposium Proceedings 15
Deborah Perry, PhD
eborah Perry is an Associate Professor in the Department of Pediatrics, Center for Child and Human Development. Dr. Perry is also an adjunct professor at Johns Hopkins University, !"Bloomberg! School of Public Health. Dr. Perry has expertise in the area of research and policy development for vulnerable populations of children and families, and is a nationally recognized figure in the area of children’s mental health consulation. She brings to the panel the perspective of federal and state policy affecting children with disabilities.
My first job after college was at the New York City Board of Education in the Special Education Budget and Policy Office. That was in 1985, I’ve now told you how old I am, I’m not supposed to do that anymore, “The federal right?
of programs that are So, fast forward a little bit, I went and I got a Masters degree, and in trying to help families live 1989 I moved down to Washington, DC, three years after the passage of in communities PL 99-457 (now: Part C of IDEA). 99-457 was a really important point independently and raise in the expansion of the mandate of services under EHA. And the their children with Education for all Handicapped Children’s Act really marked, I think, a disabilities to become turning point in the larger disability policy movement in framing services healthy adults. for children as a civil rights issue. EHA (now IDEA) guaranteed a free Unfortunately for service and appropriate public education for all children in this country providers, collaboration regardless of their disability. What PL 99-457 did, now almost a decade and linkages between later, was to expand those same rights to children birth-5. So, this new and among the programs component, expanded the then optional program for infants and toddlers is difficult and with disabilities, to a mandatory program serving children 3-5, preschool cumbersome.” aged children.
*Education for All Handicapped Children’s Act (EHA) or 94-142 was the major federal initiative establishing the right for a free and appropriate public education (FAPE) for all children irrespective of their disability. Passed in 1976, the Act was reauthorized in 2004 and was renamed the Individuals with Disabilities Education Act (IDEA). In 1986, Part H (now called Part C) offered incentives to states to provide services to children from birth through age 5. Currently, IDEA has two major service provision components: Part C addresses the infants and toddlers program and Part B, including Section 619, addresses children from age 3 through 21.
Framing Disabilities Symposium Proceedings 16 PANELIST PRESENTATIONS
Just a year later, 1990, the same year the Americans with Disabilities Act (ADA) was passed, another really important landmark in children’s disability policy occurred, the Zebley decision. This was when the Supreme Court decided that applying adult criteria for determining eligibility for disabilities was not appropriate for children. SSI, supplemental security income, was an important way for particular children who were poor and disabled to be able to access Medicaid, which offered a critical set of services. So Zebley the impact of disabilities anniversary of the passage of really opened the door for more and impairment. the ADA, let’s have a press children to qualify for Medicaid. In conference, let’s talk about that, fact, the number of children tripled Over time, my work has focused but let’s not talk about the fact that from 1989-1995. This (the Zebley on how states can use federal we haven’t made significant strides decision) is an example of the programs to try to build a system in any of the things that the ADA impact that public policy can have of care. The federal government’s meant, and this is now 19 years in terms of services. During welfare approach to serving individuals with later. What we sometimes see, but reform in 1996, I was at the disabilities is at best, fragmented, certainly not often enough, in- National Governor’s Association, and certainly categorical. We have depth analysis when a federal law and we were grappling with the things like the Department of is being reauthorized. And often intersection among Medicaid Education, SSA, the Social Security the reporting focuses on one or two policy, SSI, and Title V, which Administration, which is where specific issues. I remember during some of you may know is another Medicaid and Medicare are one re-authorization of IDEA, the really important pillar in the operated, SAMHSA, the Substance big thing was children who were federal infrastructure for children Abuse and Mental Health Services being expelled because of behavior with disabilities and children with Administration, ACF, the problems. That was the only issue special needs in general. Administration on Children, Youth that the media focused on during a and Families, the list goes on and very complicated re-authorization I found myself back at Georgetown on. We have this whole host of that had a lot of important issues University and at that time, a lot of programs that are trying to help that were being discussed. Finally, the work that we were doing was families live in communities what we almost always see is the focused on children with mental independently and raise their media frenzy when systems health problems, particularly children with disabilities to become breakdown. We hear about the around children who were very healthy adults. Unfortunately for lawsuit that sort of triggers people young, specifically birth to five. service providers, collaboration to say, ‘Wow! This doesn’t make Not only thinking about treatment and linkages between and among any sense.” The media could help of children who already have the programs is difficult and make sense out of this. The media disabilities, but trying to shift the cumbersome. could be helping people navigate conversation to trying to do some the system better. prevention. Prevention is a really I think as we bring this back to important construct that the how the media portrays this disability community has struggled sprawling policy network, I think with, trying to extend our services what we often see is tokenism. in a manner that may prevent We see, for example, it’s the
Framing Disabilities Symposium Proceedings 17
Jody Wildly
ody Wildly is the Program Manager for Diversity Outreach, at the Office of Diversity, Management and Equal Opportunity at the Department of Health and Human Services. Prior to her position !" at HHS,! Ms. Wildly was with the Office of Disability Employment Policy (ODEP). The mission of ODEP is to create systemic change for persons with disabilities in regards to employment opportunities. Ms. Wildly has worked in the disability field for over 15 years. She was the Executive Director for the Center for Independent Living and the Director of the District of Columbia Partnership for Assistive Technology before her tenure with the Federal Government.
After twenty years in the disability community I took a position as the diversity outreach manager within the Department of Health and Human Services. I have found that in this position I am able to affect change and “The diversity field influence the “system” greater than when I was focused on disability has started to frame specifically. And the system certainly does need to be influenced! Disability is now a component of the wider sphere of diversity. It has the issue of diversity been extremely interesting working for the Federal government because as a business case. I’m not certain if you’re aware that only 0.6% of people who work in the This is something federal government are persons with disabilities. We have been trying to work on that, but in governmental terms, beyond the bureaucratic that the disability rhetoric, you wonder how serious is the government who makes the laws community should about disabilities. We’ve probably been around 0.6%—actually we hired more persons with disabilities in the 80s than we have in the year 2000, also foster… This shift and we often wonder why that is. We’re hoping that the president passes in definition of an executive order such as President Clinton did at the time that will diversity to include mandate that certain agencies hire persons with disabilities and that there’s this rush on hiring. Also, one of the problems that we see now, individuals with with the Recovery Act, that all these agencies are doing massive hiring, disabilities must but unfortunately, people with disabilities aren’t in that mix.
be done at all Recently, the diversity field has started to frame the issue of diversity as levels, including a business case. This is something that the disability community should the federal also foster. I don’t think anybody has come up with a business case: “why should we hire people with disabilities, what’s in it for me?” In government.” working with hiring managers, I have found that 1) hiring managers feel that its going to cost them a lot of money, because of assistive
Framing Disabilities Symposium Proceedings 18 PANELIST PRESENTATIONS technology and things that people doing to make certain that the coming back and the disabilities with disabilities might need; and 2) government or any other entity that they have acquired from being there’s no real need to hire people realizes that people with there. This is an opportunity for with disabilities. Often times, disabilities are viable individuals the media to portray people with hiring managers who are mindful with skills that the government can disabilities positively. of diversity don’t consider people use. This is very timely because with disabilities in the mix of over the next 5 to 10 years, the Unfortunately, there is often a diversity. They want to hire people baby boomers will be retiring story about someone using a from different cultures and creating a massive shortage of prosthetic limb or how someone is different minority backgrounds. people within the government. overcoming adversity. I would like People need to be encouraged to be Individuals with disabilities need to propose that the soldiers part of the arena of diversity. This to be positioned to be part of the returning from war can be the solid shift in definition of diversity to succession planning. business case we need. If you pay include individuals with attention to the number of soldiers disabilities must be done at all Finally, I’d like to say, if no one who are returning home with levels, including the federal has really thought about the disabilities then you can’t help but government. If you think about it, business case, this is one that pay attention to all the individuals if the federal government isn’t should be important to everyone. with disabilities who want to work. going to do it, who is going to do No one ever talks about the I’d like you to keep in mind as we it? But being a person with a number of soldiers that are coming move forward that disability and disability, I am also a firm believer back with disabilities. People diversity are inter-related and we in the fact that it is my always talk about how many have to build a case for people responsibility to make certain that people were killed over there, but with disabilities to become happens. There are certain things no one ever really talks about, on a employed. that we should be responsible for serious level, the numbers that are
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Nolana Yip, PhD
r. Yip is a Lecturer in the Department of English here at Georgetown as well in the Liberal Studies Program, where she also serves as a faculty mentor to incoming students. In addition, !"she is on! the faculty of the Corcoran College of Art and Design, where she teaches in Academic Studies—nothing as Nolana says, “exciting like sculpture or painting”. Dr. Yip received a PhD in literary studies, at George Washington University where her dissertation focused on issues related to disability and disability studies within the framework of ethnic studies literature.
Thank you Toby and Barbara for inviting me to participate in this discussion along with these esteemed panelists. My work within the academy is from a humanity, academic perspective. My work includes cultural studies, which examines text, broadly defined. I examine the totality of literature, film, broadcasts, journals, newspapers, as far and “I think that wide as Jane Eyre, Charlotte Bronte, The Mad Woman in the Attic— Rochester’s wife, who’s locked up in the attic because she’s mad—to something as something like Murder Ball, a very MTV-like production that actually simple as linguistics students love when I show in class.
actually starts off a Within humanities, I introduce students to a field of disability studies that is likely they’ve never really considered or thought about. And, although good conversation scholars have been studying disability for such a long time, actually it about disability was not considered a proper field until 2005, when the MLA-the Modern Language Association—which is sort of the governing body for and the power humanities, considered it a proper field. That’s really not that long ago, terms can have in actually. Shocking, isn’t it! So, although scholars have been interested in disability studies for awhile it was not until May, 2005 that it was establishing a consider a “real field”. I also take a very interdisciplinary approach to disability studies, for example incorporating disability and queer representation of studies*. Also, along with disabilities studies post-colonial studies, like disability.” race studies, gender studies, all intersect to form a rich tapestry of the human experience. I also try to take a very local approach to disabilities, so it’s not just something I teach from the outside of ourselves, but we are looking at something, for example, our campus. A lot of you are from Georgetown University, I wonder how much we think of this university as accommodating as we’d like it to be. Or, even, sort of DC in general. You know, we talk a lot about what’s happening in Gallaudet, what the peers of the Georgetown students are advocating for through their
*Robert McBruer, PhD, at George Washington University is a major scholar in the area of disability and queer studies. Dr. McRuer’s work focuses on queer and crip cultural studies and critical theory. His work includes considering locations of disability within contemporary political economies and the roles that disabled movements play in countering neoliberalism and hegemonic forms of globalization.
Framing Disabilities Symposium Proceedings 20 PANELIST PRESENTATIONS protests. Let’s find out, let’s get to I also like to teach Lennard Davis sensibility. But also, deals with what is happening here, locally, so who writes a great essay on capitalism. There’s sort of that the classroom discussions are constructing the norm. It’s really high fashion, niche market of connected to life. important to historicize disability. somebody whose trying to sell It’s almost as shocking to imagine something. Finally there is the I hope this doesn’t sound too much that disability is socially realistic, where she talks about like a lecture, I did have class this constructed and it is culturally portraits. Her example here is Judy morning.
*Lennard Davis is professor of English in the College of Liberal Arts and Sciences and professor of disability studies and human development in the College of Health and Human Development Sciences, University of Illinois at Chicago. His works on disability include Enforcing Normalcy: Disability, Deafness, and the Body, which won the 1996 Gustavus Myers Center for the Study of Human Rights’ annual award for the best scholarship on the subject of intolerance in North America, and The Disability Studies Reader. His memoir, My Sense of Silence, was chosen Editor’s Choice Book for the Chicago Tribune and nominated for the National Book Award for 2000 and for the Book Critics Circle Award for 2000. He was co-founder of the Modern Language Association’s Committee on Disability Issues in the Profession.
Framing Disabilities Symposium Proceedings 21 PANELIST PRESENTATIONS
is going to start something really actually gives us five ways that can is often left out of the conversation great in assistive or adaptive also work for the media to entirely, and this is particularly technology, or that doctor is finally empower the disabilities rights critical in the university setting, going to have an awareness of movement. These five ways are where issues of mental health are disability, or that teacher is going global in nature, comprehensive often prime, where a lot of time the to be more aware of that. The and meaningful to a broad professors are the first people to second call to action they have is audience. The first is the know things, where professors are to review and revise our establishment of histories, and I often in the position to guide a traditional notions of disability, would say he’s talking about that student toward appropriate and to note that those notions have broadly speaking. The resources and supports. And, that social and political implications establishment of histories of there is a hierarchy also with and ramifications. And, I think that disabilities written from the congenital disabilities vs a really key point for academics to perspective of the people with disabilities that are from accident realize is that everyone here is disabilities, including articles, or from war. As Jody was talking dealing with actual, hands on, books, newsletters, and journals. about earlier, there’s something people with disabilities and The second is the creation, more cool about having been an sometimes, you think in academia, distribution, and consumption of amputee from an accident than it is you’re really separated from that. disability culture from music, to say, have a congenital But, this point of realizing that our dance, plays, literature, athletics. disability—I’m not saying that’s perceptions of disabilities have For example, there are dance the case, but that’s what the social and political ramifications troupes composed of individuals perception is. That’s something really connects academia to the with disabilities or musicians or that we have to keep in mind, ‘real world.’ Because, that means, artists of all sort. The third point he about the hierarchy of disability. what you’re learning in school and says to empower the disability Then, my final point is that we are what you’re learning—or what rights movement is to change the very well aware of the context of you’re even teaching—has way people with disabilities are disability. I’ll give you an implications outside of the referred to. It’s an issue of example—the mental illness in the classroom, it has real world semiotics, discourse, self- context of say, Burmese refugees, ramifications. The third call to identification. And, for Charlton, in a novel such as Wendy Law’s action that they have come up with self-identification becomes ‘The Coffin Tree’ is vastly is a new and alternative way to primary in the disability rights different than let’s say, the mental even consider disability. movement. That, you feel that you illness of a young college girl, let’s should participate in the discussion think of Sylvia Plath’s ‘The Bell So, my students always say, ‘ok, of what’s happening in and around Jar.’ To that end, we really need a that’s great. So, I’ve read these disability issues. The fourth is an high degree of cultural competence, essays, and this is what they say to establishment of disability related not only in our healthcare system, do at the end.’ But, that’s not and disability support by our healthcare providers, and I really an answer. How do I, you organizations, NGOs, and am thinking of Anne Fadiman’s know how do we really change networks. The fifth empowerment ‘The Spirit Catches You and You those concepts of disability? How act is coalition-building within the Fall Down,’ or a great PBS do I revise our thinking? What are disability community. So, those documentary called ‘Hold Your those alternative ways? Why don’t who have vastly different kinds of Breath’ by Maren Grainger- these scholars give us some disabilities are working together Monsen and Julia Haslett about an answers? So I like to teach James towards a common goal. Afghani immigrant dealing with Charlton’s Nothing About Us stomach cancer. But, cultural Without Us,* which is such a great My final point that I’d like to make competence is really important for title, I think: Nothing About Us today is, actually twofold, that us in a field representing disability Without Us. I like to end the there is a hierarchy of disability, either as scholars and teachers, but semester on this, because he that we realize that mental illness also as journalists.
*Nothing About Us Without Us: Written in 1998, this book quickly became a major read in the disability rights movement. It is the first book in the literature on disability to provide a theoretical overview of disability oppression that shows its similarities to, and differences from, racism, sexism, and colonialism.
Framing Disabilities Symposium Proceedings 22
Question and Answer Session
rich discussion occurred in the context of a question and answer session following presentations by Judy Woodruff and panelists. Event participants included a broad range of representatives from the news !"!media, Disability Studies scholars, professionals who serve people with disabilities, family members, and people with disabilities. Throughout the discussion among participants and presenters, a number of issues emerged as being relevant to the media’s representation of people with disabilities.
Media Portrayals
Comments and responses Dr. I. King Jordan, the former people with disabilities are broken, president of Gallaudet and need to be fixed, and it’s a were focused on both the University made the following negative thing to have a disability, quality of the coverage and comments about the larger societal and to be disabled, but it’s perceptions that frame media onerous… So, until we start talking underlying, sociocultural coverage, as well a fundamental about the attitudes and beliefs and assumptions embedded in need to change deeply seated what’s in people’s hearts instead attitudes and beliefs about of what’s in people’s minds, then media coverage. Participants disability and human variation: we’re never going to make this. spoke of the need to feature The only way what’s in people’s I think this whole discussion needs hearts is going to change is when issues and experiences of to be put on the table, and that’s the media and the public start to the whole idea of attitudes about people with disabilities talk about differences as disability and perceptions of differences. And start to talk about throughout the lifespan. people with disabilities. I disability as just one aspect of the sometimes call it the great divide: human condition, and it’s in that it’s them and us. And it depends on diversity mix, disability is just one who’s talking about it, who’s them kind of difference. and who’s us. And, most of the
time, it’s the able-bodied people, Panelist Beth Haller, a or the not-yet disabled people, or journalism professor and the differently, mildly disabled researcher from Towson people, or whatever you want to University, followed up by call the group that doesn’t include addressing social and cultural us. And, when ‘they’ talk about beliefs in terms of the attitudes of accommodations for people with journalists: disabilities, they talk about how those accommodations are made to I really think that some of what help ‘them,’ but we have to pay for we’re seeing in the media coverage them. And, so it’s not just that comes from the actual fears within
Framing Disabilities Symposium Proceedings 23 QUESTION AND ANSWER SESSION
the writers and journalists who are it absolutely feeds stereotypes, it online newspapers and journals, covering these stories. They think really fosters the stigma that personal web pages, and social they’re being fair and objective people with mental illness indeed networking sites that are and all that stuff that we teach have, and also, to some extent, increasingly available to some of them in journalism school—but may foster discrimination. us. This electronic content poses they really can’t understand that new challenges and responsibilities their own fears for their own body Tina Campanella, Executive for the disability community to be are creeping into their stories and Director for Quality Trust for mindful of. they can’t grasp that someone Individuals with Disabilities, and could have a full and enjoyable life longtime advocate for people with Quinn Bradlee is a young adult as a person with a disability. I disabilities of all ages, suggested with learning disabilities who has think no matter how many times that the ability to change larger written extensively about his life, you tell them that, they just can’t sociocultural perceptions was and also made available resources get over that kind of pitying part of mediated by another kind of about learning disabilities and human society that is just so diversity, socioeconomic level: virtual communities of support pervasive. Journalists are people through his website The central issue is societal, since too and they have these same friendsofquinn.com. At the disability is really defined or biases that are embedded in so conference, Quinn spoke about occurs within the context of much of what they do. I think that’s how the virtual realities of society. As a society, what do we going to be the really, really cyberspace could specifically believe is the role of people with difficult thing to try to get across empower people with disabilities: negatively valued differences? to people, because, they don’t They are not just differences, The media is a great place with know that they have them, they they’re negatively valued. They’re people with learning disabilities don’t know they’re biased. not seen as desirable by other and especially the Internet,
people. How do we expect, as a because you can create Tawara Goode, panelist and the society, to respond to those? If you communities, and you can create Director of the National Center think about some of the things that communities within communities. for Cultural Competence, have been said today, people with There’s now something called highlighted a way of re-framing means figure these things out. It’s Second Life where you have your attitudes and perceptions about the people without means that own avatar, and you can create disabilities by offering expanded really don’t figure these things out, him or her in any way…Your definitions of ability and disability, and it touches a variety of things, avatar is able to participate in a as well as thinking about how like education, like opportunity to 3-dimensional instant messenger, mental health issues are connect with lots of different in essence, to fly all over the world. perceived of: experiences and people within the I just think it will bring people of Disability arises at the interface community, with accommodations. all sorts of needs together—that’s between a person’s functional just one of the things that the abilities and the environment’s These comments about media Internet will be able to do. accessibility representations reflecting larger (www.disabilityisnatural.com). societal views certainly underscore Although Quinn highlighted the Individuals who experience mental a need for institutional and global ways the Internet could provide a health issues are largely portrayed change, which can in part be kind of virtual mobility for people in sensational events. That may driven by individuals within the with disabilities, other participants include homicides, suicides, or disabilities community. Many pointed out the limitations of new other violent acts. That’s what we threads of the discussion were technologies. A woman with see with mental illness frequently focused on pathways for change. hearing impairments made the in the media. While the following comments: overwhelming majority of people Participants spoke about the The media’s very interesting to me, with mental illness are not violent, explosion of information available because with politics and if that is the sole media portrayal, through new media—the many everything that’s going on in the
Framing Disabilities Symposium Proceedings 24 QUESTION AND ANSWER SESSION world today, we all watch TV. But, those, like my daughter whose have cerebral palsy and they want we are also on the Internet. cerebral palsy affects her hands, to tell their story on You Tube, but There’s no captioning on the they just cannot do it. She manages the response that you sometimes Internet. CNN has video a cell phone quite well, but she’s see is shocking! People will leave streaming, for example, on the cut out from that sort of public comments to the effect, “I Internet, there’s no captioning interaction. And most of the don’t believe autism exists;” “You there, so how do I access that? My people, a lot of people in the should have all died.” It is horrific question slash comment is disability community are affected and I don’t see any monitoring of accessibility and how do I have full in that manner. that or pushback. I actually access to the Internet, and not just responded to an article in a paper for media, TV, and theater…What In addition to the opportunities and about somebody who had an do you do about that part of the challenges posed by new media for intellectual disability. Two people accessibility issue for deaf folks people with disabilities, other had already commented that the and other people who may need it? critical consumers of information person should have died. I What do you do about the available on the Internet also contacted the list-serve person, or accessibility issues with new media voiced concerns. Rachel Brady, the webmaster, where they say you for other disability groups? faculty member at Georgetown can report abuse, and I reported it. University Center for Child and Now that we have this impact of In referring to the experiences of a Human Development, articulated media that is so immediate and family member with disabilities, her concerns about the unregulated unfiltered, how does it influence panelist and journalism professor nature of what appears and is our discussion? from the University of Illinois at responded to on websites: Urbana-Champaign, Leon Dash Several panelists spoke to this What do you think the impact of expanded on the participant’s participant’s call for all of us new media consumption is on comments about access: taking responsibility for the way disability issues and discussion is? information is handled on the Most of the Internet in terms of use For example, somebody will put Internet, an admittedly unregulated of Twitter and hand texting and something on the Internet about forum. Panelist Deborah Perry, PDAs are unavailable to people in their child with autism, or faculty member at both the disability community because somebody will make themselves Georgetown University the keys are too small. Particularly vulnerable in other ways— they Center for Child and Human Development and Bloomberg School of Public Health at Johns Hopkins, expanded on the notion of becoming actively involved in shaping the dialogue that unfolds online: The new media opens up opportunities, but it also opens up responsibilities. I try to take the time to actually register, or create an account on websites where I see something and would like to intervene. If there are times when you encounter that, I think it’s an opportunity for education that reaches another sector of folks you may not normally come into contact with. Those of us who are university professors, we get to
Framing Disabilities Symposium Proceedings 25 QUESTION AND ANSWER SESSION
inform and educate. Those of us Before the Internet really took Baggs, who is a person with who do training out in the hold, the way people could autism, and she does a brilliant job community as well. But, this is one respond was letters to the editor, of discussing what her life is like, more sphere where we can and editors decided whether this and how she communicates, why influence the dialogue. information was going to get she does some of the things she published. Now, it seems like the does, and how they help her—just Beth Haller ultimately concluded ultimate freedom of speech for what her life is like. Some of the that the unfiltered nature of everybody, no matter what hateful people enter negative comments on information on the Internet by thing they have to say, can say it. her videos, but it is highly people who experience disabilities, But I think, that on the flip side, the educational for people who do not tempered by comments from a fact that somebody is able to get know to be able to obtain some supportive community, could help their message out there is amazing. specific information about shape perceptions in real time: There’s a really great series of disabilities. So, I think you have to videos on You Tube by Amanda take the bad with the good.
The Tangle of Terminology: Towards Person-Centered Language
Societal views by journalists something as mundane as the In response to a clarifying question by National Public Radio’s Lisa and laypeople about words used to refer to a group Shepherd, journalist Judy disabilities are inescapably are important because they Woodruff noted the following in reflecting on her son’s experience encoded in the terminology have ramifications for both with disempowering language: we use to describe people the self-perception of people For me, it’s very straightforward, I with disabilities. Beth Haller with disabilities and what the mean when you say the term, the words ‘disabled person,’ that says and her collaborators have general public believes about that person has no ability, is not contributed substantially to disability.” At the symposium, able, they’re disabled, and so, I our understanding of the panelists and participants have a problem with it. I mean, I know people use that in shorthand, relationship between disability discussed the inadequacy of but what it basically does is that it language use in the media, the terminology that we use to confines that person to sort of a heap of humanity that isn’t capable the self-perceptions of people describe people with of doing anything. And so, that’s with disabilities, and the larger disabilities and deconstructed not what we’re talking about, we’re ways people with disabilities some of the more problematic talking about individuals who have abilities, who can do things, who are perceived of by others. In language issues, touching on can get things done, but who 2006, Beth Haller and her many of the themes in the happen to have some differences and in some cases, some profound colleagues Bruce Dorries and literature on the changing differences in the way they can do Jessica Rahn suggested “that cultural language of disabilities. things, but they have abilities as well. They are not simply to be defined by their ‘disability.’ They are, you know, they have something to offer. As I hear my son Jeffrey, and I’ve heard other
Framing Disabilities Symposium Proceedings 26 QUESTION AND ANSWER SESSION people with disabilities say, ‘I with a disability, panelist Deborah As I think about the issue of how want to be considered a whole Perry added: do you refer to people with human being, just like everybody disabilities, I think it is really very My husband became disabled a else. I have all the dreams, hopes, important to respect the language year after our marriage. He had a aspirations, both personally and that an individual with a disability very serious motorcycle accident, professionally in terms of a career, and/or their family use to describe broke his neck at C3 and C4. As a in terms of a life, as everybody themselves. Even if you choose not result, was not in a wheelchair, but else. But I have to go about it in a to use that terminology, you have lost the use of one of his arms and different way.’ So, to me, it’s not a to be respectful of the family’s significant hearing loss. When I, as small difference. wishes. From a media perspective, someone who does disability policy you may explain that there may be have talked to him about this Ms. Woodruff’s comments a disagreement within the broad people first language, you know certainly highlight the way disability community overall of that part’s the easy part; the identities of people with what is the most appropriate or disabled part is the hard part. And disabilities can be deeply affected acceptable term. Then, you should as I said in my opening, as we’ve by terminology used in the media be able to acknowledge the term shifted from using the word and elsewhere. that the individual and/or family ‘handicapped’ to ‘disabled,’ from wants to use, and be able to justify his point of view, he prefers Quinn Bradlee responded to the in a publication or broadcast, why ‘handicapped,’ because there’s question of terminology from his that term is being used. nothing that he can’t do, its just perspective of a person with a harder for him to do it. He just has learning difference: The preferences of individuals or to figure out a creative way to do families around language could The other thing I’m trying to do is it, whether it’s using a button hook also be culturally bound, as Beth transfer learning disabilities to on his top button, because he Haller indicates: differences, because learning wants to button that top button disability literally means that when he’s putting on a tie himself. One other point about language is you’re disabled at learning He doesn’t want to ask me every that it is also very culturally something. If you think about it, morning, ‘help me honey’… So, I specific, because I know from that could be about anything. If just think that we have to be aware having several friends in England that’s the case, then we all have that even within this language doing research with people in the learning disabilities. Learning issue that it may be that the word UK that they hate people first differences is that we just have a ‘disabled’ is not something that is language over there. Their different way of learning, and preferred, even if from the preferred term is ‘disabled again, we all have a different way perspective of a person with a people,’ and I forget their of learning. In a way, it’s kind of disability. Again, and I resonate explanation about why they hate like the word, ‘normal’—there’s with Quinn saying, you know that ‘people with disabilities’ as a term, really no such thing as normality. there are differences, and we have but they love the term ‘disabled Normality is an idea and a concept differences across multiple people,’ that is why maybe you can of something. There’s no one domains, and I appreciated the explain to us why the difference is actual definition of normality. comment. there. So, you have to also be very careful, and I think the problem Quinn poignantly highlights the Clearly, the preferences of an that a lot of people have with the idea of multiple kinds of individual with disabilities must terminology is when people what I differences, as well as the potential always be taken into account when call ‘nounify’ it, when you say ‘the of language to restrict the way we determining what term to use, and disabled,’ you’re taking all the imagine difference. The comments as panelist Tawara Goode points humanity out of the terminology, of other panelists were also out, there is sometimes a tension whereas ‘disabled people’ vs. instructive in this area. For between what an individual or ‘people with disabilities,’ at least example, in discussing the family prefers and overarching they’re still people in the terms, experience of a family member changes in terminology: whatever you may think of them.
Framing Disabilities Symposium Proceedings 27 QUESTION AND ANSWER SESSION
Katherine Guernsey, Education These comments by conference not come out correctly. It will be and Outreach Director of the participants suggest that language ‘the disabled,’ ‘the wheelchair- United States International choices by individuals, families, or bound,’ ‘the elderly.’ And I’ll call Council on Disabilities (USICD) organizations often reflect the way the writer and say, ‘What offered her insight on the connection disabilities are framed—whether happened?’ And they’ll say, ‘You of language to larger sociocultural issues of access and ability rest know, our editors, it’s our editors.’ contexts by commenting on how with the individual or society. people first language has been Considering the way larger views Judy Woodruff was sympathetic handled in the UK: can be encoded in language, it and equally perplexed about the came as no surprise that in the persistence of disempowering I really appreciate all of the context of this conference, there language in the media, even in the comments about the need for was much discussion about face of resources that provide people to self-identify with disability language that appears in guidance about the use of more whatever speaks to them. And, that the media. Paula Terry, Director inclusive terminology: there are differences of opinion of the National Endowment for both within the US disability Yes, to write ‘person with a the Arts Office of AccessAbility, community and certainly abroad. disability’ or ‘persons with registered her frustration with how With respect to the UK, my disability’ takes up what, another reporters seem to have disregarded understanding from colleagues 1/2 inch, or inch of one line guidelines for use of people first there is that ‘disabled people’ for beyond what it would take to write language about disabilities: them is more consistent with the ‘disabled person.’ In television, it social model of disability. In other I work with many artists around takes another half of a second to words, when one says ‘people with the country who have disabilities say that. I know space is tight and disabilities,’ it implies that themselves. The language is very heaven knows the media are going disability is somehow an inherent important. We have on our website through a tough time right now, characteristic, whereas it’s a language paper but these are some things I think different functional abilities that (http://www.arts.gov/resources/Ac we shouldn’t have to give in on. are the inherent characteristics. It cessibility/index.html), that not is society and society’s barriers only artists themselves have Beth Haller followed up by that are disabling. So, for them, spoken about, but older people as providing information about the ‘disabled people’ implies people well. When I do interviews with the resources on language and disabled by societal exclusion and press, I always give them a copy of disability that have been readily societal barriers. this paper and invariably, it will available to journalists: The Associated Press Stylebook, which is used by most newspapers “From a media perspective, you may as the way they’re supposed to refer to people and it is a 300 page explain that there may be a disagreement book that has from how you refer within the broad disability community overall to the FBI to disability. Disability activists back in the late 80s of what is the most appropriate or worked with The Associated Press acceptable term. Then, you should be able Stylebook editors to change the to acknowledge the term that the individual language. So it says not to use the term ‘wheelchair-bound,’ it says and/or family wants to use, and be able use ‘person with a disability.’ It to justify in a publication or broadcast, says don’t use the word disability if it’s not part of the story. Again, why that term is being used.” this goes back to my point about human beings are human beings. — TAWARA GOODE They are so entrenched in their own biases that they don’t even
Framing Disabilities Symposium Proceedings 28 QUESTION AND ANSWER SESSION think to pick up the Stylebook to default for the media to just use the tone of this coverage, and the look at how to refer to a person language there. language used to describe people with a disability, which is what with disabilities. Yet, by they’re supposed to be doing if Journalists and other media purposefully selecting people- they’re a reporter. So, there are representatives are certainly in the centered language, we all have the those resources, and they’ve been position to influence the way capacity to make inclusive approved by the disability laypersons think about disabilities terminology more salient. community and they’re a great though the amount of coverage, the
Transforming Beliefs about Disabilities through Formal and Informal Education
Augmenting what Dr. Yip In addition to formal coursework, disabilities in different educational conference participants discussed settings could result in raising presented about the Disability the ways views about disabilities consciousness on a larger, Studies courses she has were transformed through familial societal level: relationships and long-term I don’t know what’s involved and developed, several friendships with people with what it takes to expand the kind of disabilities. participants discussed educational offerings that are university-based course available, but we need to begin to Jody Wildly, Program Director think as a society regularly and offerings (or the lack thereof). for Diversity Management at the typically about individuals with Department of Health and Disability Studies is an disabilities. There are several Human Services and panelist, different ways I’ve heard it interdisciplinary field that is wondered the following about expressed, but individuals with university-based training about focused on the contributions, disabilities have been described as people with disabilities: experiences, history, and the next great civil rights frontier. Oftentimes disability isn’t included I don’t know if that’s necessarily culture of people with in the whole scheme of diversity. the case, but I do think that there’s disabilities. Although, as Dr. Yip Do you believe that if it was a no question that people with pointed out, Disability Studies requirement in the university arena disabilities have needs that are not to add a diversity course but being met, they are not thought of, is a relatively new discipline, inclusive of people with disabilities either in a jobs picture, education, courses and concentrations of that that would open up— the many, many issues of particularly in journalism, that accommodation, it just isn’t there. study are increasingly being would open up people’s minds that Except perhaps when they’re offered in this area. In fall of people with disabilities are just as celebrating the anniversary of the efficient and effective and can do Americans with Disabilities Act, 2010, a Masters of Professional as many things as people who are the ADA, and congress is debating Studies in Disabilities Studies non-disabled? a few amendments here or there— Program will begin enrolling you’ll get a little bit of media In response to Ms. Wildly’s attention. Otherwise, it isn’t done. students at Georgetown question, several participants I know there are some of you here University’s School of discussed their experiences with that do work in higher education disabilities-focused classes—both obviously, and you can address the Continuing Studies. as students and instructors. feasibility of adding that to the Judy Woodruff suggested that curriculum. I think, absolutely, including content on people with what would be wrong with adding
Framing Disabilities Symposium Proceedings 29 QUESTION AND ANSWER SESSION a few classes per semester on, session, who were really taken educational establishment needs to what are the laws when it comes to aback by a lot of the things they put more emphasis in that disability, what do we owe these read in terms of Disability Studies particular arena because of the individuals, and how potentially and were able to develop a new coursework that they offer to could those laws and should those awareness of people and how general education and special laws be changed. people want to be treated. And I education teachers to make sure can only hope that the readings they’re thoroughly prepared An instructor and graduate that make them aware of things going forward. student from the University of will have an effect on the way that Maryland shared the following they deal with other people in their In order to make changes in higher about her teaching experiences own careers. education curricula, colleges and having an effect on a broader universities are certainly in need of demographic of undergraduate With respect to reaching even institutional support. Dawn students: students beyond those completing Rudolph, who works at the Disability Studies concentrations, Association of University I’m currently teaching an Sandra Strachan-Vieira, mother Centers on Disabilities (AUCD), American Studies introductory of a child with disabilities and highlighted some of the support course where we talk about co-chair of a local Special available to universities through a popular culture and identity Education Advisory Committee, national network: construction. So, I have added in suggested that teachers who serve Disability Studies readings and I just want to offer a resource as a students with disabilities are often those types of things to my follow-up to the conversation woefully underprepared: coursework for my students, as about disability courses in higher well as having experienced that in Georgetown doesn’t have a school education. Our agency is a other courses—in women’s studies, of education, but many other national membership organization in American studies, across the universities in the area do. Many for university centers that focus on campus. I’m not sure how much general education teachers when disabilities, we support a network everybody is aware here, that there they complete their programs, of university centers on are Disability Studies programs Masters programs, included, do so disabilities, University Centers for that are now growing across the without any background in Excellence in Disabilities, such as country. Temple University has a behavior management skills nor the one here at Georgetown. We really amazing program that is just any skills to implement also support the Leadership in growing by leaps and bounds, as accommodations and Neurodevelopmental Disabilities does the University of Illinois in modifications for children within (LEND) programs, and also the Chicago. There are a lot of general education classes. We did IDDRCs, which are Intellectual professors taking up Disability a brief survey and looked at some and Developmental Disabilities Studies in their own work. These of the coursework offered, and Research Centers. We also work classes are popping up as well as there really is no coursework with CDC health and disability the programs, and it’s really a offered for these general education grantees. These university centers growing community, so everybody teachers. Even some of the special are a tremendous resource, not is aware of that…In terms of who education degrees, if you look back just for intellectual and is taking these classes—A number and go over some of their developmental disabilities, but all of the students that I have in my coursework, many times even that disabilities. There is a directory on own class are American Studies falls short. I think recently one of our website (aucd.org), or you can students, or there are a lot of the universities in the area, I search for the particular center in humanities and social sciences believe its George Mason, I believe a particular state that you are students, they’re looking at careers it’s only in the last years that they looking for. Or, if you need an either in Anthropology, or instituted courses on behavioral expert in a particular arena, this is Sociology. Some in political and classroom management. So, a great resource as well. I just science. I had a number of going forward, from the university wanted to point that out. criminology students in the winter perspective, I think that the
Framing Disabilities Symposium Proceedings 30 QUESTION AND ANSWER SESSION
Panelists certainly highlighted the changing attitudes and beliefs In response to how impactful need for disability-focused content about disabilities, “all of us are in personal relationships can be in for pre-service practitioners and the media.” changing views about disabilities, educational professionals who will Jody Wildly offered the following We keep coming up and saying, work directly with children and insights: ‘You need to do….’ when there are adults with disabilities, for things we personally need to do. One of the things that I love, and professionals who will represent And, I invite you to develop close that I think is vitally important is people with disabilities in the relationships with people with that children, young people, see media, as well as for a more disabilities. I had the opportunity more positive role models as it general audience of undergraduate to work with a number of people pertains to people with disabilities. and graduate students. on a curriculum that we developed One of the things that you notice is
for children where we hired people that when children are exposed to Beyond formal educational with disabilities, and I was people or youth with disabilities, settings, conference participants working closely with them, and I that disability goes away so also discussed the advantages of became friends with them, and they quickly. My nieces and nephews, cultivating a deep understanding of became part of my extended they don’t even recognize that I the issues affecting people with family, and they were always at my have a disability now. They’re disabilities through personal house. I had my dogs running more interested in using my experiences. around when we were having wheelchair than seeing that their
meetings, I had people who were aunt needs it.
— JODY WILDLY
Framing Disabilities Symposium Proceedings 31 QUESTION AND ANSWER SESSION
The Personal Experiences of People with Disabilities: Transforming Information about Disabilities from Within
Larger framings of people with The Need to Transform and years. It’s certainly not perfect, but people with disabilities have disabilities from the media K-12 Experiences something to teach people without and in other realms are The mother of a 16-year old disabilities, so. adolescent with autism made the certainly problematic. Much following comments about Judy Woodruff responded by symposium time was devoted creating teachable moments in K- sharing some of her frustrations about the difficulties her son had to discussing how people from 12 settings through full inclusion of children with disabilities: navigating school settings as a within the disabilities child and adolescent: I’ve been dealing with public community can reframe the schools for many years. And, it I will tell you just from personal messages about themselves seems to me there’s a divergence, experience as Jeffrey was moving and I would love to see the press through school and—this was by mobilizing their personal cover this more. Laws are made, when he was younger and had experiences, in order to—as and put into place to protect some learning differences connected with the spina bifida Beth Haller noted—maintain people with disabilities and give them accommodations, but then that not so much so that he control of our own stories. The they’re never fully funded. And, couldn’t be at grade level but he experiences presented varied this becomes an issue in the had to work especially hard at schools with people accepting certain things that had to do with from what occurs in K-12 disabilities going back to K-12. We math, and creative writing, and educational settings to don’t really have full inclusion in a executive functions and so forth. I lot of school systems right now. found that every single year I had university-based and Many years ago the Center for to sit down with his teachers and workplace experiences after Exceptional Children put out a go over his entire program, that there was no mechanism that children with disabilities video from Fairfax County School system, and they were explaining passed it along from one grade to transition to adulthood, and that if you funded and included the next, it was as if I was starting recurrent themes included the these students among other from scratch every year to say, ‘Ok students and gave them the this is Jeffrey Hunt, here’s his need for change generated supports and services that they profile, here are his challenges, from within the disabilities needed in the regular classrooms, please keep these things in mind as that not only would students with you teach him this year,’ and then community. disabilities benefit, but all students check back in with them. As a full-
would benefit. The other point I time, working mom and having two would like to make is that when younger siblings—or even if I you have students with disabilities hadn’t been working outside the among students who don’t have home—I found that it was disabilities, there becomes great something that you had to opportunity for students to help constantly advocate for your child one another, and they get to know and perhaps that’s going to be the each other. We’re seeing it now, as case no matter what. But there was this generation, and its taken years not, and I would say, surprisingly
Framing Disabilities Symposium Proceedings 32 QUESTION AND ANSWER SESSION
so, there was not an awareness The media itself can change this. subsequent message. Beth Haller and even an openness in some We all know, when Paris Hilton had the following advice: instances to making any—not even gets a DUI, but we don’t know I completely agree. And one thing I an accommodation, just an when some local kid can’t go to would say is that sometimes, awareness, just know that this the school he wants because that working in a university, I’ve also child has those issues as you work school’s not willing to change. If seen how universities are not with him or her in the classroom. It the media is willing to concentrate stepping up like they should—but wasn’t there—I mean, it was there on this, different organizations, they do need to step up. I think occasionally, but not nearly often TV, print, the Internet, you know, it sometimes just the threat of media enough, so I think that as you say, would change. You put a university coverage, if you can just get a it carries a lot of importance. on the radar as we like to say, you journalist to call and ask about put them on the grid, and start doing a story, half the time, the hitting them on national news, Problematic story doesn’t even have to be done, changes are going to be made. You but things start changing. Just Experiences in put them on the news, they can’t because, I’ve had that experience see people with learning University Settings several times with advising people differences. You know, I’ll be the If the situation for school age to just find a journalist that you first one to tell you I’m not a hero. students with disabilities requires a know to call and start looking into I did my job in Iraq, I’m not great deal of support from family the story. Whether they get it done disabled, I just can’t see. I do members and school professionals, doesn’t matter as much as better than 90% of my classmates conference participants pointed out somebody—some people will fix in school. We need help, we need that in many ways, college age the problems if they think they’re advocates. Everyone says that they students and adults in the workplace going to be in the media. But, want to be an advocate, but we are left with even less protection. what’s concerning me now with need advocates, we need people in Mike Jernigan, a self-advocate, the economic downturn—I’ve seen the media willing to go to bat for and Iraqi war veteran who is this just in the last couple of us, willing to put our story out blind is currently completing his weeks—some universities are first there. We need people that work at bachelor’s degree. Mr. Jernigan cutting their disabled student these universities, these institutions spoke extensively about his services and other things that of higher learning, whether it be experiences negotiating a college benefit people with disabilities on state or private, to say something campus that he did not feel was their campuses. So, you know, to their presidents of their offering adequate accommodations, things that are already bad are universities, to their boards of as well as his frustrations about the getting worse. This is very trustees, to where the money is… way his situation was covered by unacceptable. This would be
the media: another great story the media My face has been splashed on should be covering. In the Hello, I’m an undergraduate documentaries, newspaper economic downturn, they have student who can’t see, at a articles, hell, I got 10 billboards been doing some stories about the prestigious, local university. On up with my face on it, you know. economic downturn’s impact on campus, I’m the only blind student, And its all because I’m a veteran. disability services, but I’ve not I’m known as the blind guy. A few That’s great, but I’m not a hero. seen anything about what’s gone years ago, I was known as Corporal Everyone says I’m a hero, but I’m on at college campuses. And we Michael Jernigan who led Marines not, you know. I’m no different see these positive stories about, in combat operations in Iraq. I’m than some other 30 year old blind yes, there’s this program for not getting a fair shake, I’m having guy who’s trying to get through returning vets to go to school, but to leave the university I’m at school, and where’s our help? do they follow up and find out because they’re not accessible, what’s going on with the potential and they’re not willing to be. I’m In response to Mike’s palpable problems with those programs. So, having to transfer to another frustrations, panelists offered you keep hammering away is what university, a state school that is suggestions for involving the I’d say. not as prestigious… media and controlling the
Framing Disabilities Symposium Proceedings 33 QUESTION AND ANSWER SESSION
Nolana Yip also spoke to a marathon athlete, was writing a reality shows, let’s talk about this experiences within a university story about a student who is blind reality. It is when you focus on, the setting, as well as how to address having to leave the university and super hero perspective, that these issues within universities locally: go to another school because the people are extraordinary. First of language department —she was a all, most people with disabilities Certainly not in defense of any Spanish major —was unwilling to don’t feel that they’re institution, but in the 1980s that invest in the software that would extraordinary, they’re just trying term sort of ‘reasonable run her computer, and get her to get through the day. Second of accommodations’ was access to the Spanish language all, is that when you do focus on popularized, and that can be a website at the university. So, the people who are extraordinary, you problematic term. What’s student was covering this, and he give a false impression that this is reasonable? And I think it’s was hoping to publish it, and he easy, and it is not easy, but if in my unfortunate that a lot of did publish it in the student media challenge, people would institutions can hide behind the newspaper. And he came to me follow people with different idea of something being and he said, ‘what do I do in these disabilities throughout their day, reasonable…The other thing is, I circumstances? There is one they would recognize that we make think in terms of local journalists, person who is holding this up and it look easy, but it is definitely not there’s nothing more local than the causing the student to transfer, and easy. And, I do that with the people school newspaper, which might be he’s granted me an interview.’ And that I work with oftentimes, if we a good place to start. I think that I said, ‘well, hold his feet to the just walk to get a cup of coffee, you university papers could use more fire. And make it very evident to have to ask, ‘Is there a curb cut?’ disability coverage. him that this is a selfish and We get up on one, then, ‘Is there a
inconsiderate decision, curb cut at the end of the Similarly, Leon Dash offered particularly when he had the walkway?’ Well, someone would some history of how budget capability.’ And the student think that, ‘Well, you know, duh!’ accommodations have historically did that... Does it make sense that if you have been offered at universities, and one to come up, you have one to discussed the need for advocacy on Media institutions are not different come down? That is not always the how media issues are covered from from any other institution, and they case. And people are horrified, within the disabilities community: respond to pressure and people who don’t even think about When the program for students confrontation. That may be the disability are horrified when they with disabilities started at the painful process of learning. just spend, not a day with me, if University of Illinois it wasn’t that Generally, I think everyone in this they just spend an hour with me, universally welcomed, and there room wants an expansion of the just trying to go from my building were a number of efforts to coverage of issues of disabilities. to Starbucks. It’s just one example. undermine it, and even destroy it This has to be an organized, They have a Starbucks next to the by people on the faculty and ongoing effort, and it has to be metro station, but for a person in a people within the administration. constant. wheelchair, you have to go down And their question was, what does one block to come up a ramp to get a person with a disability want? Jody Wildly presented other ways to the Starbucks. So again, my They didn’t put it in these terms, she would like to see people with media challenge is to spend a day remember this was 1948. But, what disabilities re-framing media with various disabilities, and I’m does a person with a disability images about themselves in ways certain that there would be a lot of want with an education? What are that shatter common stories to come out of that. they going to do with it? And that misconceptions about disabilities: question has since been answered. Beth Haller offered some parting This is my media challenge: I I’ve seen students with disabilities advice about ways to keep media would love to see the media follow at the University of Illinois have to representatives on message about several different people with leave the university. A student of people with disabilities, and shared disabilities throughout their days. mine, who is a student in a a vignette that demonstrates how You know, there are all of these wheelchair with a disability is also this can be done:
Framing Disabilities Symposium Proceedings 34 QUESTION AND ANSWER SESSION
I have a handout here for some of Medicare/Medicaid insurance funny to read the story, because he people, maybe with disability reasons, they could never get still tried to go for the angel organizations, or with activist married, because he would lose fiancée angle, but so many of the groups that I put together a few some of his benefits if they got quotes that she had said were all years ago. Basically, what I go married, but she stood by him, and about this issue of, there needs to through in the handout is some they had a commitment ceremony. be more in-home care, and proper issues that you need to think about She was so upset that he never got supports, and personal assistants, when you’re approaching the to live at home ever again, he had and things like that. media, how to get them interested to live in this nursing home as a 38 in your story, decisions you need year old man. She sent me this So, it’s really tough sometimes to to make when the media do call story that had been done about the stay on message when you are you for a story, because it may be two of them. It was obvious from being interviewed, but that’s one that sometimes you don’t want to the story that the reporter wanted thing, when I do discussions with be affiliated with a specific topic. to do a story about ‘angel fiancée groups about how to work with the There’s a lot of thought that needs sticks with guy whose media. And also, you have to make to go into when you are being quadriplegic.’ That was what was the decision, you may not want to interviewed by the media, and kind in his mind when he came to do the be in that story, you may get the of how you need to stay on message. interview, and she was a sense that they’re going on this journalism student in college and angle that you don’t want to be a I have a former student from a she knew that wasn’t the story she part of, so you may just say no. number of years ago whose fiancée wanted to tell. And so, no matter But, staying on message, because, became severely disabled after what question he’d ask her about, if you don’t say it, its not going to falling off a roof, and he became a she answered with, ‘What’s wrong be changed in the story, so if you quadriplegic. She lived in the with our society when a 38 year just stick with what you want to Philadelphia area, and the old has to live in a nursing home say over and over, that’s the best Philadelphia Inquirer got wind of and can’t live with on his own with thing you can do. she and her fiancée, and because proper supports?’ It was just so
Framing Disabilities Symposium Proceedings 35
hroughout the symposium, ways of re-framing sociocultural images of disabilities that are reflected in and disseminated through “Media institutions the media and other sources were presented and debated. The need for are not different!" institutional! and global transformation in the way people with disabilities from any other are treated and represented was highlighted most poignantly through the personal and familial experiences of people within the disabilities institution, and they community. Several practical strategies for these necessary respond to pressure transformations from within were presented by symposium participants and confrontation. in the rich and engaging conversations that took place between panelists That may be the and audience members, and most of us left the symposium with new painful process of ways of thinking about the experiences, history, and culture of people with disabilities, how these elements have been portrayed, and how each learning. Generally of us as stakeholders can influence small and large scale portrayals of I think everyone in people with disabilities. this room wants an expansion of the coverage of issues of disabilities. This has to be an organized, ongoing effort, and it has to be constant.”
— LEON DASH
Framing Disabilities Symposium Proceedings 36
Resources
Disability Studies Charleton, J. I. (2000). Nothing about us without us: Disability oppression and empowerment. Berkely, CA: University of California Press.
Davis, L. (1995). Enforcing normalcy: Disability, deafness, and the body. Brooklyn, New York, NY: Verso.
Davis, L. (1999). My sense of silence: Memoirs of a childhood with deafness. Champaign, IL: University of Illinois Press.
Davis, L. (Ed.). (2006). The disability studies reader (2 ed.). New York, NY: Routledge.
Fadiman, A. (1998). The spirit catches you and you fall down. New York: Farrar, Straus and Giroux.
Garland-Thompson, R. (2002). The politics of staring: Visual rhetorics with disability in popular photography. In S. L. Snyder, B. J. Brueggemann & R. Garland-Thompson (Eds.), Disability studies: Enabling the humanities (Vol. Modern Language Association of America): New York, NY.
Grainger-Monsen, M., & Haslett, J. (Writer) (2005). Hold your breath. USA: Fanlight Productions.
Law-Yone, W. (1983). The coffin tree. San Francisco, CA: Knopf.
Plath, S. (1971). The bell jar. New York: Bantam Books.
Rubin, H. A., & Shapiro, D. A. (Directors) (2005). Murder Ball. USA: Paramount Pictures.
Framing Disabilities Symposium Proceedings 37 RESOURCES
Georgetown University Offers Disability Studies Program
Georgetown University, School of Continuing Education in collaboration with the Center for Child and Human Development offers a Masters degree and Advanced Certificate Program in Disability Studies. The program which has three tracks (Developmental Disabilities, Early Intervention, and Mental Health System of Care for Children and Youth) begins in September, 2010
The Disability Studies program offers you the resources and knowledge you need to build a career collaborating with individuals with disabilities and special health care needs and their families helping them meet their goals and become active participants in the community. The program will prepare you to be a leader advocating for individuals with disability, providing community based services, developing policy, and participating in scholarship in the area of disability.
These three tracks build on the strengths of the existing work being done at GUCCHD and the Georgetown University community at-large. The GUCCHD was established over four decades ago to improve the quality of life for all individuals with disabilities and special health care needs and their families. The Center is founded on an interdisciplinary approach to service, training, research, community outreach, technical assistance, and public policy. The Center brings to bear its unique capacity on critical social issues most notably disability, poverty, homelessness, and social injustice by influencing local, national, and international programs and policy
Unique to the Disability Studies program will be an on-line and classroom based program of study. All students will be required to meet as cohort groups at Georgetown University for specified amounts of time during each course. Ongoing instruction, however, will be delivered through an on-line platform. This model offers greater flexibility building a vibrant, diverse community of learners.
The Center for Child and Human Development is excited to be collaborating with the School of Continuing Studies, providing a rich program of study.
For more information on the Disability Studies Program please go to http://www12.georgetown.edu/scs/departments/32/master-of-professional-studies-in-disability-studies
Toby Long, PhD, PT, FAPTA Associate Dean, Disability Studies, School of Continuing Studies Associate Professor, Department of Pediatrics Center for Child and Human Development Georgetown University 3300 Whitehaven Street, NW, Suite 3300 Washington, DC 20007
Framing Disabilities Symposium Proceedings 38 RESOURCES
Framing Disabilities Symposium Proceedings 39 RESOURCES
Legislation Passed or Pending Addressing Language Use
Alabama: pending respectful language bill Missouri: legislators considered a bill to remove (HB246) in 2007 legislative session "mental retardation" from the state DD agency's name but didn't pass it Alaska: state law (HB357) effective May 12, 2006 revising existing state statute to remove outdated New York: Governor Spitzer signed the Person terms and replace with respectful language First Bill in August 2007 to institute people first language for new and revised state laws, documents, Arkansas: passed People First Language bill in etc. 2007 legislative session New Hampshire: Governor John Lynch signed Connecticut: passed respectful language bill Senate Bill 153 into law to establish a commission to (SB63) requiring the use of respectful language in study changing statutory references to "mental Connecticut General Statutes when referring to retardation" persons with disabilities, October 1, 2007 Oregon: state law effective January 1, 2006 Indiana: pending bill (SB94) Governor Mitch Daniels signed Senate Bill 94 into law May 2 Pennsylvania: Executive Order signed July 22, 1992 Louisiana: policy in Department of Hospitals and Health to use respectful language; seeking an South Dakota: lawmakers considered a bill early executive order to expand this to other departments in 2007 to establish the use of People First language in state laws but didn't pass it Massachusetts: legislators considering House Bill 1876 to change the name of the Department of Vermont: the DD Act of 1996 required a state Mental Retardation to the Department of department name change from Division of Developmental Services Developmental Services to Division of Disability Aging Services Minnesota: people first language law effective Washington: state law effective June 10, 2004 August 1, 2005 Washington, DC: passed 2 bills in 2006, the 1st to Mississippi: state law effective July 1, 2005 make sure past language changes and the 2nd to directing state agencies and drafting offices to make sure present and future language will be prepare legislation and rules using respectful People First Language language Utah: joint resolution made during 2006 General Session urging state agencies to update references to archaic language (mental retardation)
FROM: PEOPLE FIRST LANGUAGE BY SELF ADVOCATES BECOMING EMPOWERED (SABE)
Framing Disabilities Symposium Proceedings 40 RESOURCES
Websites Disability and Society American Association of People with Disabilities: http://www.aapd-dc.org Center for Human Policy, Law, and Disability Studies, Syracuse University: http://thechp.syr.edu Center for Universal Design. What is universal design? http://www.design.ncsu.edu/cud/univ_design/ud.htm Definitions of Disability: http://www.accessiblesociety.org/topics/demopgraphics-identity/dkaplanpaper.htm Disability History museum: http://www.disabilitymuseum.org Disability Rights Promotion International: http://www.yorku.ca.drpi Disabled Word, magazine for people with disabilities form Canada: http://www.disablied-world.com Disability Social History Project: http://www.disabilityhistory.org International Center for Disability Resources on the Internet (ICDRI): http://www.icdri.org Mind Freedom International: http://www.mindfreedom.org Mobility International: http://www.miusa.org Models of Disability: http//www.copower.org/leader/models.htm National Arts and Disability Center: http://nadc.ucla.edu National Institute on Disability and Rehabilitation Research (NIDRR): http://www.ed.gov/about/offices/list/osers/nidrr/index.html National Organization on Disability: http://www.nod.org Research and Training Center on Independent Living: http://www.rtcil.org Society for Disability Studies: http://www.disstudies.org World Institute on Disability: http://www.wid.org
Media and Disability Assistive Technology News: http://www.atechnews.com/home.html BBC Ouch! http://bbc.co.uk/ouch Center for Accessible Society: www.accessibliesociety.org Database of films with disability content: http://www.disabilityfilms.co.uk Disability blogroll: http://disstud.blogspot.com Disability Nation online community: http://www.disabilitynation.net Disability Radio World Wild: http://www.independentliving.org/radio/index.html Disaboom social networking site: http://www.disaboom.com DREDF Media and Disability Initiative: http://www.dredf.org/Media_and_Disability/index.shtml e-bility disability news from Australia: http://www.e-bility.com Guidelines for Reporting and Writing About People With Disabilities: http://www.rtcl.org/products/index.shtml
Framing Disabilities Symposium Proceedings 41 RESOURCES
Inclusion Daily Express, a disability news wire: http://inclusiondaily.com National Center on Disability and Journalism Style Guide: http://ncdj.org/styleguide.php New Mobility magazine: http://www.newmobility.com Media and Disability Resource Page: ww.media-disability.net Media dis&dat blog: http://media-disn-dat.blogspot.com Mental Disability Rights International: http://www.mdri.org On a Roll radio show: http://www.thestrengthcoach.com/remodel_radio_gold.html Patricia E. Bauer blog: http://www.patriciaebauer.com Disability World, international webzine: http://www.disabilityworld.org [with] TV: http://www.with-tv.com
Framing Disabilities Symposium Proceedings 42