Interview With Rachael Zubal-Ruggieri
WG: Rachael, everyone on the Disability Studies (DS_HUM) listserv is familiar with the posts that you make from Syracuse University to update all of us on the latest articles in the field of disability studies, but I doubt that most people know about what your work is at Syracuse. Can you talk about what you do?
RZR: I have been working at the Center on Human Policy for over 28 years as Information Coordinator. I am responsible for coordination of all informational materials for Center on Human Policy and funded projects, including websites, email account(s), internet Listservs, and design of promotional materials. Much of the work at the Center over the past 42 years has involved "the study and promotion of open settings" (inclusive community opportunities) for people with disabilities, primarily those with developmental or intellectual disabilities. Many years ago on behalf of staff at the Center, I started collecting resources on any number of subjects concerning our funded projects. It became apparent to me rather quickly that I had a knack for finding relevant information quite easily; thus, my information seeking (and keeping) began in earnest. The information I find is not only relevant to the work of Center staff, but Syracuse disability studies faculty and students as well. If I know a student is researching a particular subject and if I see a relevant piece of literature or research, I can share it with them. I also have a great deal of bibliographies that I would like to someday share with the outside work, but it will take some time to do this.
WG: How you go about finding all of this latest information.
RZR: I find what I find in a variety of ways. I subscribe to Table of Content (TOC) alerts for different publishers, notably Taylor and Francis, Sage Publications, and so forth. I subscribe to Google Scholar Alerts under a range of subjects that are emailed to me quite regularly. Even in receiving information from all of these outlets, it has taken me a bit of finesse in able to see something of value. Much of the skill in doing so has been accentuated by the fact that I am a part-time student (Child and Family Studies major, Disability Studies minor), so whatever I read and learn about, furthers my knowledge.
WG: As you have worked in gathering information from various sources over the years, have you been able to see certain trends develop I'm thinking especially of disability studies here? What areas of interest or particular topics seem to you to be emerging as cutting edge issues.
RZR: I'm not certain that I have necessarily seen any particular trends, per se, but I do know that as new people join the DS-HUM listserv (and who are "in" disability studies), I sometimes seen very similar queries surface (and resurface) on the list. I see DS-HUM especially to be a gold mine of information (and not because of my contributions necessarily), whether it be via archives of previous messages sent or the scholars who are close at hand who have relevant information or can respond quickly. I think some of the topics that are emerging more and more are ableism, examining literature from new viewpoints, and the fact that more and more disabled scholars are studying disability as well. Bérubé (2005) has said in his writing, there are things that are not about disability but really are, but he also tells us that we need to pay attention to these representations and these works because it shapes how disability is understood in general in our culture (2007). I am trying to dig out these citations, but can send as soon as I find them! I know that I myself can find things that may not be explicitly about disability or within disability studies outlets that may be relevant as well.
I've got foci of my own (autism, popular culture, play and children with disabilities), and have done some writing and only relatively recently started refining some of them and have started a blog. I wanted to wait until I had more posts to add (rather than stop because I didn't have time to write), so I have several more things in the work, but have posted two pieces of substance so far as well as one poem.
I'm also hard at work in planning "Cripping" the Comic Con 2014 with Diane Wiener and others. Diane and I are also working on a new repository, called Beneath the SURFACE and will launch an Open Source periodical at some point as well.
WG: Can you talk a bit more about the Cripping the Comic Con conference that you and Diane are planning?
RZR: The first "Cripping" the Comic Con symposium (or "Cripcon") took place at Syracuse University on April 11, 2013. We are now steadily working on the plans for Cripcon 2014, which this year will be two days, April 9-10, 2014.
Fantastic! Heroic! Disabled? "Cripping" the Comic Con was the brainchild of mine, along with encouragement and support from Diane Wiener, the Director of the SU Disability Cultural Center and Research Associate Professor in the School of Education's program in Cultural Foundations of Education. I began talking with Diane about the idea for a "cripcon" shortly after we met, in October of 2011; this was almost immediately after Diane arrived at SU and we had a conversation about how we both professed a love of Spider-Man, comic books and geek/nerd culture in general. We decided to pursue this idea, in earnest, once the Disability Cultural Center had been firmly established on the SU campus; the more detailed plans to create the symposium began in April 2012.
Anyways, why look at comic books? Why look at all these "nerdy" things? What's the big deal about popular culture? One thing to share first is the image used on the Cripcon website. This image–identified post-Cripcon as Captain Battle (see http://pdsh.wikia.com/wiki/Captain_Battle) is representative of what the Cripcon symposium has only begun to look at.
This image was included in the "Comic Book" Word Press theme used to create the Cripcon website. While there are many immediate impressions of this picture just from looking at it, it is quite representative of the whole idea behind this event. Diane and I both recognized when we first used this image– we didn't emphasize this awareness, initially, as clearly as we perhaps could have–this it is indeed a representation that is both racist and imperialist, that some individuals may experience the image as hurtful and offensive. Our intention in using this image was to underscore and complicate the underlying tensions and intersections that we believe exist between disability, race, nation-state, class, gender, sexual orientation, etc. And so the participants shared share more images, ideas, representations and so on that will also "push the envelope." So, this symposium serves (and will continue to serve) as a space to address many of these themes further.
As we note in our website, using the terms "crip" and "cripping" is one way of "taking back" language and power from the people who, and the institutions and systems that have used it historically (and, in some cases, presently), to harm and demean people with disabilities. Language, control, and social power are thus asserted by people with disabilities and our allies, who have the right to speak for ourselves and act on our own behalf.
Disability studies scholars do recognize "…the presence of disability in narratives…never considered to be 'about" disability (Bérubé, 2005, p. 568) but we need to acknowledge that really not enough sustained attention is paid to these representations within this segment of popular culture. And we must be sure we do this, as every representation of disability has the potential to shape how 'disability' is understood in general culture–that"the [popular] cultural representation of people with disabilities affects us all." (Bérubé, 1997, 2005).
Referring to and citing our initial call for proposals and subsequent materials, this symposium was also created not only to meet unmet needs in scholarly spaces and beyond but also to address vital areas of concerns. Popular culture studies and literature do not pay consistent or adequate attention to disability; when this attention is paid, it is often via "special issues" of journals, etc. Further, "Popular culture is…he discursive terrain on which larger social issues are played out, often unobtrusively and masked as entertainment–and this is precisely why pop culture needs to be examined even more closely…" (Nayar, 2011, p. 172). This includes comic book characters, TV shows, films, photography, newspaper articles, and more, especially the ways that disability can and are portrayed in them. Because popular culture is still sometimes not taken seriously within some of these spaces even among some disability studies scholars and practitioners, its status remains, for some, "discounted," at times, even "deviant". Consequently, this symposium aimed to begin to critique what may be described that way–as "deviant"–and to question and disrupt what "counts" as academic, mainstream, and normative. So we began to assert not only cripping, but breaking and remaking the academic box–not just breaking out of the box, or such boxes.
We had "open space" that provided an opportunity for participants to create spontaneous and/or planned topical interactions with other participants–in other words open space was an opportunity to create spontaneous symposium "sessions." We did careful work to make this event accessible and available to and for all participants–particularly students and any emerging scholars–to share their work and to make any information provided or presented accessible and usable. We will continue to benefit from discussing and learning about disability and popular culture in ways that include and welcome everyone's participation. We strongly support the notion that "academics have a responsibility to make their work relevant for the society they exist within" (Jurgenson, 2012) and this of course includes making disability studies relevant and accessible to the disability community (Ne'eman, 2012).
WG: I'm guessing that you must have had quite a diverse crowd at the conference and wonder if you saw any of spillover from one group into the other–for example–that those who attended primarily because they were comic book enthusiasts began to recognize some of the negative images perpetuated through the comics and that those with primarily scholarly interests began to take more seriously the importance of attending to this aspect of popular culture.
RZR: We had a great turnout, and I believe that the majority of presentations were indeed by scholars who sought to point out the negative imagery in popular culture in general, not just comic books. We had presentations by "emerging" scholars as well–by undergraduate and graduate students. I don't know if we necessarily had spillover from one group into another, though, as not many people (read: not scholars and not people in the industry either) are seriously examining these popular culture subjects in terms of disability, problematic or not. I think there could be some good examples that begin to emerge, but this may take more time. I do think that people with disabilities themselves are often the ones who point out problematic representations, but in fact, they still consider themselves fans.
WG: Tell us a bit more about the work you are doing with autism, both your blog and your other writing.
RZR: I've only just begun more serious work and writing/thinking about autism in the last couple years. First, through my work at the Center on Human Policy, I met Jim Sinclair, founder of Autism Network International and Autreat, and we have supported ANI and Autreat for many, many years. Other things I've been working on include being the co-creator of the first ever symposium on neurodiversity at Syracuse University. It was at this event where I presented publicly for the first time on being the mother of an autistic kid. It was hoped that the symposium could be more regularized, but neither I nor the other planners have had much of any time to work on it. There is the potential to have a flash blog, Twitter fest, or something else coordinated via social media in the future.
After many yeas of supporting ANI and Autreat, I also presented for the first time at Autreat this year: " 'I'm Just A Mom': A Discussion For Parents And The Autistic Community To Work Together. " The abstract for this presentation represents the fulcrum of what my work in autism currently entails:
As the mother of an autistic child, I have immersed myself in reading all kinds of information on parenting and motherhood, especially literature about and narratives of parents within the autistic community. Upon close examination, a "culture clash" has emerged between parents on opposite sides of the cure vs. acceptance debate. The more popular narratives of parents who "fight" for recoveries/cures are indeed quite contrary to the fewer, lesser known stories of parents who focus instead on acceptance, accommodation, and positive autistic life. As I strongly identify with these acceptance-oriented parent narratives, and as a parent who supports and works for autism acceptance, I have found that there are not enough representations of these relevant parent narratives portrayed in the media or published in general, but increasingly these perspectives are being written and have spurred me forward into writing my own parent narrative. Even worse than the recovery- and/or cure-oriented narratives, is the long-used language and rhetoric that make the work of writing my narrative more difficult. I seek to work with other accepting parents and autistic self-advocates to improve the public's perception of autism better. How can we work together?
I've been writing for various classes throughout my part-time studies, including "First Person: Narratives of Illness, Disability, and Identity," a course offered from the Consortium for Culture and Medicine, Upstate Medical University taught by the fantastic Rebecca Garden. A large part of the coursework was writing assignments, especially our own personal narratives. My first big writing project was to write about my hearing loss, and I experimented with a Mind Map and Tumblr posts. T(the blog is titled "Ear, Ear" and includes a few random thoughts and many links to issues of importance for the d/Deaf and Hard of Hearing community. My second writing project was on parenting narratives and autism acceptance which I was a bit more successful at doing.
I also took a wonderful, two-week course with Minnie-Bruce Pratt at SU on Creative Non-Fiction, which was fantastic and encouraging, and in this class I continued to write about parent narratives and autism, but in a more imaginative way. Now I've decided to use many of the pieces I wrote for both these classes, along with information from the presentations I've made, and then take them, divide them up, and have several posts ready to be posted. Since I was so comfortable in writing this subject, I felt I could then progress to a blog.
And while there continue to be so many contentious issues in the autistic community, I find that I have to keep my focus on what I've already written and thought about. I feel I could get lost in the rhetoric, even though I can and do choose sides, have opinions, and have relevant experiences. So I'm selective with respect to what I can and cannot write about. I would never rule out writing about any particular aspect of the subject, but for now, I will focus on what I've already written. For example, Autism Speaks is certainly a very contentious organization within the autism community, but I tend to be careful about what I say publicly. In fact, I believe it is more important for me to support Autistic self-advocates' views of the organization more than my own. But I am encouraged, though, since I have been able to find like-minded parents out there, and one of the best among them are the Facebook group, "Parenting Autistic Children with Love and Acceptance" (https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance.
I continue to write and think about many subjects, but most especially about autism, popular culture, and hard-of-hearing issues, distinctly. I continue be "a finder" on any number of subjects, and will continue to do so, most especially sharing my finds with the Disability Studies community-at-large.
Editor's Note: a portion of RZR's answer to questions about cripping the con were taken from a speech prepared for that conference in which she referenced the work of other researchers. A list of those references cited is listed below.