Interview with Disabilities Media Scholar Beth Haller
WG: Beth, being involved in mass communications with a specialization in disability studies has to put you in a rather unique academic position. What sorts if things are you involved with on a daily basis?
BH: We don't have Disability Studies (yet) at my home institution of Towson University so I don't do any DS teaching there. But we are hoping to start a DS minor soon. That means my daily activities are mostly in the area of research, writing and curating social media. I have a Facebook page and Twitter account related to my 2010 book and I post disability related news on those daily and a few times a month I post news articles to my Media dis&dat blog.
I usually have several research/writing projects going at once. I worked with several people in the last couple of months writing chapters for a book on social media and disability. One chapter with Jeff Preston at Western University in Canada was about inspiration porn, "Confirming Normalcy: 'Inspiration Porn' and the Construction of the Disabled Subject?" and one with a USC Ph.D. student Meryl Alper called, "Social Media Use and Mediated Sociality among Individuals with Communication Disabilities in the Digital Age," which is about how some people who don't have verbal speech use curation on social media as communication. I have also been working on an ongoing research project on the representation of deaf culture and ASL on the ABC Family show "Switched at Birth."
I currently have a 2-year project with Towson University's Hussman Center for Adults with Autism to create an all-online media advocacy training course. The first general version is complete at the Disability Advocacy Through Media website. I am now working with the Hussman Center and the Autistic Self Advocacy Network (ASAN) to create an all online media advocacy that is in plain language for autistic people and people with developmental disabilities.
I am an adjunct at CUNY DS master's and bachelor's programs and have taught media and disability courses there in person and online. I am also an adjunct at York University Critical Disability Studies program in Toronto, where I supervise master's students' final projects occasionally (usually 1-2 per year since 2009).
All these activities keep me busy, as well as my mass communication classes at Towson, where I teach undergraduate Media Law and in our master's program in Communication Management. I am also the program director for the master's.
WG: You mentioned work on inspirational porn. Can you elaborate on what you mean by "inspiration porn"? I think that to most people outside of the disability studies community that may sound almost like an oxymoron –after all isn't inspiration a good thing?
BH: Here's our definition from the paper: Inspiration porn can manifest in several formats, from a type of online poster with an image of a disabled person doing something ordinary with an inspirational tagline, or it can be a YouTube video of a disabled person doing something that nondisabled viewers perceive as being extraordinary (and as inspirational as seen through viewers re-posting, titling or commenting) or it can be an article from a website like Upworthy, which even has a story category called "Inspirational."
The problem with inspiration porn is that it objectifies disabled people and portrays them as de-humanized caricatures instead of people.
WG: I know this is a very broad question but, being involved with as many varieties of media as you are, can you give a kind of hit list of the sorts of images/representations of disability that you currently find most troubling?
BH: Medical model, Supercrip and pity-oriented stories are problematic. Anytime people are presented as a disability and not a person or as less than other people or as "inspirational" for getting up each morning, it is misrepresenting disabled people. My concern has always been that many people may not have met many disabled people so they get information about disability from the news and entertainment media, which presents these inaccurate representations of people's lives. And when the media spends its time covering these fluffy features, they are neglecting significant disability news, like the ADA not being fully enforced for the past 25 years.
WG: While advances in technology and social media can – and have – frequently given those with disabilities much greater ability to participate in the at large community, it seems to me that they can also at times reinforce divisions. I'm thinking, for example, of people who are quadriplegic and can use adaptive equipment to access the computer but for whom Twitter is not just useless but exclusionary. Do you see this as a problem?
BH: I think new media forms, although flawed, help more than they hurt the disability community because they allow disabled people to tell their own stories without the gatekeeper of traditional media. I realize there are access problems that definitely need to be fixed with many social media forms, and some media forms are very sensory specific. For example, Instagram and Pinterest are almost completely visual media that would not be useful to most blind people, whereas Twitter has been embraced by the Deaf community because no sound or verbal speech is needed to convey a message. (I am always proud to say that I have had a direct message conversation with the deaf actress Marlee Matlin via Twitter, which I can guarantee wouldn't have happened without social media.)
Facebook combines multiple sensory experiences, tons of never-described images, videos that probably have no captions, and writing in posts that may be difficult to understand. But even with all that, I think Facebook has strengthened disability advocacy and cross-disability communication. I always cite the 2009 New Mobility article, "Why does Facebook matter?" when discussing social media. The late Denver activist and writer Laura Hershey, who had spinal muscular atrophy, gave a great quote for that article about disability advocates staying connected through Facebook: "When you see people once or twice a year, or even less often, it's hard to keep up with them," says Hershey. "Facebook lets us stay in contact, even see each others photos of home, families, local actions, travels, etc. I find that really fun."
Finally, I would say that the Internet itself is exclusionary because of socioeconomics, education, technology fears, etc. Recent statistics show that 40% of people 65 and older are not online. Many people with disabilities can't afford the technology the rest of the country has come to rely on. Sometimes children with disabilities who rely on technology to communicate can't take home the tablets they use at school. These inequities must be solved because many new technologies and online communication can be empowering forces for both individuals and society.
WG: I'd like to follow up with your statement that "many people may not have met many disabled people so they get information about disability from the news and entertainment media, which presents these inaccurate representations of people's lives" by asking if you can give a few specific examples.
BH: News coverage right now (January 2015) is giving out incorrect information about disability via people like Sen. Rand Paul, who thinks many people who receive SSDI are scamming the system, with non-disabling back pain and emotional problems. And in 2013 there was an NPR Planet Money story that also implied unemployed people are getting designated as disabled as part of a "disability industrial complex" in which unscrupulous lawyers are getting nondisabled people designated as disabled to get government money. People who don't know any disabled people or how little money SSDI is may believe these kinds of stories that paint disabled people as scammers and fakers, when in fact, a 2013 SSA report says denied disability claims have held steady at 59% from 2003-2012.
As for entertainment representations, a recent (thankfully) quickly cancelled show "Growing Up Fisher" played a blind father for comedy. Even though it was based on a real son growing up with a blind father, it had scenes of him trying to drive, etc. that misrepresented how blind people interact with the world. Even a popular show like "Lost," which had a disabled character who was only disabled in the flashback scenes, had misrepresentation of disability by having the character use what looked like an airport wheelchair instead of the lightweight, ergonomic chairs that most active wheelchair users would have.
WG: In the introduction to your book Representing Disability in an Ableist World, you write "Media content is shaped by dominant societal belief that come from the power of the dominant able-bodied culture which defines and classifies disability." Your book was published in 2010. Do you think that this statement basically still holds or that in the intervening five years progress has been made?
BH: Yes, I think it still holds true. We have made some progress in media images but the 2015 Oscar nominations confirms we haven't come that far, with several major nominations once again for non-disabled actors playing disabled.
I think the most progress we have is from disabled people being able to protest and critique ableist media images much easier these days through blogs, social media, YouTube, etc., and through the growing number of disabled media makers creating real representations of their own authentic experiences.
WG: 7. Talk a little bit more about your work with the Hussman Center and the Autistic Self Advocacy Network (ASAN). Why is a self-advocacy network necessary and what issues do you face in trying to set up accessible online media advocacy?
BH: I have a 2-year fellowship from the College of Fine Arts and Communication at Towson University, where I am faculty, with the Hussman Center for Adults with Autism. I created a general online media advocacy course for disability activists last year. This year I am creating an online media advocacy course specifically for autistic adults and those with developmental disabilities. I wanted to partner with the Autistic Self Advocacy Network (ASAN) so they could assist me in making sure the course is useful and fits with ASAN's advocacy efforts.
The course will be written in plain language so hopefully as many people as possible can access the content. That will be the biggest challenge for me as an academic – learning to write in a plain language format, but ASAN will be helping me with that aspect of the course because they have expertise in plain language content.
American society contains many problematic images of autism in the media, so in my opinion, it is crucial that autistic people and their allies learn how to talk about topics related to autism in ways that will dispel the media myths people believe.
WG: You make a really important point, that much of the work being done by the academia in disability studies needs to be translated into a vernacular that is accessible to the lay person. Do you have any suggestions or thoughts about how this can be accomplished? It sounds as though your work with ASAN is a beginning first step.
BH: The autistic community members are leaders in this area in trying to make sure information is accessible and in plain language. I think disability studies researchers are better than most in trying to make presentations accessible and easier to understand, but for academic journals any writer has to "play the game," i.e. write articles in the format that will get them published.
I am lucky because I was a journalist before I was an academic so I was used to writing for a more general audience. But I am just learning about how to truly put writing into plain language. Prof. Ibby Grace has a wonderful essay on the topic: "Cognitively Accessible Language (Why We Should Care)" . She makes the case that this is not only an access issue, but a justice issue. I totally agree. If we acknowledge the concept of neurodiversity, then we must write in ways that diverse brains can process the material.
WG: I want to thank you for taking the time to for the interview, especially since in a few days you will be heading off to Australia with a Fulbright scholarship. Before we finish up, can you let us know what you'll be working on in Australia?
BH: I will travel to Sydney and Perth Australia on February 1 to participate in the Fulbright Specialist Program, which are short-term projects of 2-6 weeks. The project is: "Disability, the Media, and Digital Technology: Issues, Challenges, and Future Research." It is related to my media and disability research.
I will be in residence at the University of Sydney for ten days where I will collaborate with Gerard Coggin, a professor of media and communications who is an international expert on disability, digital technology and media. There, activities will include a symposium on media and disability issues, a public lecture about my research, and meetings with researchers from universities in Sydney, Canberra, Wollongong, New South Wales, and Curtin to develop a landmark research project on disability and media in Australia and the United States.
During the 10-day residence at Curtin University in Perth, I will collaborate with disability and media scholar Katie Ellis, a senior research fellow in the School of Media, Culture and Creative Arts. There, I will participate in a symposium on social media, sponsored by the Centre for Culture and Technology, a master class offering mentoring for media researchers and teachers, and a workshop on best practice approaches and pedagogy for students with disabilities.
I will stay 3 weeks longer than the Fulbright time and do a media advocacy workshop for Arts Access Victoria in Melbourne, present my research at the Melbourne Social Equity Institute, as well as be a guest lecturer at the University of Wollongong in NSW, where I will speak to journalism classes and at a screening of the disability documentary "Fixed."
WG: Sounds as though you definitely have a full schedule. Good luck.