Interview with Carol Marfisi

WG: Carol, it must be quite a gratifying experience to be teaching in the disability studies department at Temple University, a school that was in the forefront of publishing work by writers with disabilities, clear back in the 1980's when few other schools were doing it. What has it been like for you to teach and help develop courses at Temple?

CM:I have found out that sometimes you just have to trust destiny in knowing what you should be doing and where you would best be able to contribute. Although I received my M.Ed from Edinboro State University with a focus in Rehabilitation Counseling and had every intention of joining a counseling practice, my career took me in many directions working with people except for that of formal counseling.

In 1994, I was approached by the executive director of the Institute on Disabilities at Temple University to consider joining the Institute's staff in becoming the training coordinator for AmeriCorps program. This program worked with corps members with and without disabilities to perform two years of service to the community.

I was approached after that initiative ended, to teach Disability Rights and Culture, a graduate course. I realize that not having formal training in classroom teaching except for teaching a freshman course in Career Orientation, as part of a graduate assistantship at Edinboro University. I knew that I would need to self-mentor and to read theoretical articles and books on disability history and policy. Although I had a considerable significant experience in working in different contexts with people with different types and degrees of impairment, I knew that my experiential contributions were not enough to meet the demands of teaching a graduate course. For several years, each semester I was given a co-teacher with a PhD, since that is the university policy. All my co-teachers were extremely genuinely supportive, actually encouraging me to take the lead in teaching.

It was with the guidance and attentive listening of my colleagues that I learned to develop curriculum, they always being granted the authority of the design of the course and the content of the syllabus. Within the last three years, I have been requested in addition to teaching graduate courses, to teach an undergraduate course on my own. The course is under the auspices of the Department of Therapeutic Recreation. Over the past five semesters I have had an average of 25 students in this course per semester. The topic of the course is disability identity, but the topics apply naturally to beyond people with disabilities since identities are irrespective of abilities or impairments.

As far as my being a part of the Disability Studies effort at Temple U, I have to say that although in my department, the spirit is definitely willing, but the university bureaucracy is not without institutional barriers.

While people who are associates with the disability culture take for granted that Disability Studies is a legitimate burgeoning discipline, it is hard to make attitudinal changes within the pedagogical community that disability is not based on traditional assumptions, such as solely medically or organically problematically defined. Neither is disability based on the very entrenched notion that disability is more about the study of how to provide therapeutic and educational intervention in order to decrease the distance between the impaired person and the social constructs of "normalcy". We are, as is all too well known, not only obsessed with the notion of normalcy, but we as a western, capitalistic culture have moved from the fixation of normalcy to that of obsession with hyperperformativity and appearance.

At Temple we are at the state of moving slowly, but steadily. The culture as a whole, ironically needs more accommodations than do actual disabled people, therefore courses are interspersed throughout receptive departments, rather than at this time, instituting a full blown comprehensive systemic change of totally extricating the study of disability from the medical and allied health care field and presenting a formal degree program in disability studies from a cultural, political, and social perspective.

It had taken many years to inculcate the medical model as the only model to discuss disability, it probably will take an equal if not more amount of time to achieve a necessary paradigm shift, but if there is a population that is skilled in patience but perseverance it is us disabled folk.

WG: What have you tried to do in the courses that you teach to counter the medical model of disability? Can you give some specifics?

CM: There are many strategies that disability scholars and professors use to explain how the medical model became the overarching public anchor in the "understanding" of disability. It is fascinating if you are interested and conversant in US history and even in periods others than the current one. The way society has evolved in looking at and relating to "the other", not meaning exclusively the disabled, but "the other" in terms of cultural imperialistic parameters. History of religion, philosophy, anthropology as well as other fields of study reveal the way in which perceptions are shaped according to various determinants at a particular time. These determinants are based on economic social mores, science and medicine, geographic politics, etc.

The more of a knowledge base that is developed, the greater the impact is on various social issues. Greater does not necessarily mean better, it just means having more capacity to conduct initiatives that reflect government and public opinion.

In my classes, we talk very little about medical diagnosis, only to say that they are a nomenclature that could be dangerous in the wrong mind and in the wrong hands. We talk more about how the emergence of societal trends impact the sentiments of the masses and, more importantly, how this intertwines with the influences of the way in which the population as a whole is governed by those in power, usually those having class and economic leverage (that's part of power). The class discusses an array of topics that are discrete but inextricably attached, such as politics, religion, and social thinking about the initiatives that should be implemented to take care of the marginalized or helpless in society.

This is where the medical model is highlighted and has a never ending role. If throughout history there has been an obsession or a proclivity towards the normal, the regular, the beautiful, etc., any manifestations that cannot conform within those parameters will be thought of as abnormal; either needing cure to become normal or prostheticism to look and act in a way that is close to the norm and palatable for onlookers. Or, if this situation is "unbearable" as deemed by the medical experts and authorities, extermination (also known today as euthanasia or mercy killing) is always an option that is sublty or directly among the menu of choices to do with one's life. The medical model seems to me that there is an ever-existing need to do something with one's life as opposed to just letting it be and adapting the environment to support and appreciate the many different manifestations of living a life.

Basically, that is the beginning plan from which we as a class go on to talk about the social model, the Marxist model, and the Chicago model of disability.

WG: As a person with a disability, you obviously have a lot more authority/credibility teaching disability-related courses than an able-bodied person. How have your students responded to you and what kinds of challenges has it posed for you?

CM: One would think that having an impairment and being connected to the disability culture more or less would give me, or someone similarly situated, an advantage in teaching disability studies. There has been, however, somewhat of an ongoing discourse within the society for disability studies as well as the community of universities at which disability studies-type courses are taught. It would make sense that someone with an impairment would have a closer core-experience, but this could be seen as a quagmire to weaken the substance of disability studies as being on par with other social political identity movements. Disability studies should not be seen as an anecdotally oriented discipline. It must be seen as rigorously as other disciplines taught at the University level. I used to be of the firm belief that disability studies should only be taught by qualified individuals with impairments, but as I matured professionally, I see where the value of having pedagogical input by a non-disabled professor could make a course even more provocative and balanced. There are many disability scholars without visible impairments who I would not give a second thought about them teaching with me or in place of a professor such as me with an impairment, as long as they know theory and have some ethnographic experience with the population about which they are teaching.

On one hand, as I said previously in this interview, one cannot rely solely on the fact that they have lived the disability experience, or even that they are immersed in different aspects of the disability culture. These are very beneficial variables for one to have, but they must be balanced and maybe even superseded by one's investment in studying different discipline and the ways in which those disciplines look at the individual from a sociological, psychological liberal arts and even medical bioethics perspective. For example, I teach a course entitled "Disability Identity", in which students of all different majors take, either as a requirement or as an elective. I do in fact have a relatively high percent of students from helping professions, however. The class "Disability Studies" is becoming of greater interest to non-social science and allied health students. This year I've had students from such diverse disciplines, such as finance, business management, film/media, and urban studies. I and my colleagues in Disability Studies in a context like this, would need to be conversant and have at least a baseline knowledge of what those disciplines may entail and know how to tease out where those disciplines might converge as well as diverge from disability studies. If an instructor with an impairment and experience in the culture, but could not relate it to other disciplines or career tracts, disability studies would be seen by many as irrelevant. If disability studies is seen as irrelevant to non-allied health care and education majors, we would be right back where we started, that disability is more or less a matter for "those people" who are working in medicine, social science, and education fields. The goal of disability studies is not only to rectify the misconceptions that have been taught as facts about people with impairments. Disability studies is also charged with the responsibility of making people aware of the pervasiveness of prejudice, stigma, and injustice based on a cultural imperialistic notion of the body (meaning body and mind). Disability is part of the lifespan, it's not a mishap or unpredictable occurrence. It will involve every person who is living and breathing at this moment, whether a person experiences the world from a disability perspective themselves, or they fall in love with someone with an impairment, or if they have aging parents who acquire impairments. The list goes on. Society is somewhat of a slow-learner, but disability studies can accommodate even the most resistant of attitudes towards accepting the fact that being proactive and making society accessible and well-informed is a step towards maturity and wise proactive planning.

WG: Carol, I've been asking all the questions here, but I wonder if there is anything that you want to add that we may not have touched on before we wind up the interview.

CM: Yes, there is one thing I would like to add. I am personally troubled by the way that the media and educators tend to use examples of the supercrip in presenting the topic of disability to the public. While I do think it's not a bad thing if one achieves great goals in their lives, I think that a lot of the achievement is based on a person's platform of privilege. If a person has a certain class, educational familial and economic background, they obviously are competing on a much different playing field level than the person who is not as socially or economically privileged. I do also think that if we are to progress as a disability culture or community, we have to rid ourselves of the binary between people who live in the community with impairments and people, for whatever reason, with impairments who live in long-term care facilities. I do not advocate the cessation of the push for community based living. However, on the other hand, I do not want people to judge people with impairments who live in institutions as victims or less than... in any way. There are so many mitigating complex circumstances in each person's life. Independence is not based on where you live or the trappings of autonomy, it is based on the expression of a person's will, self-respect, and self-defined identity.

WG: I agree that is an important concern, and one that needs to be discussed more fully so that the public generally is aware of the issues involved. Thank you for taking the time for the interview. Good luck with your future teaching experiences.