In this paper, a sociopolitical perspective is applied in order to explore why individuals in the U.S. who are Deaf are disproportionately vulnerable to HIV infection. An analysis of the social, political, and attitudinal environments surrounding people who are Deaf reveals numerous barriers that may hinder access to sexuality education and HIV prevention programs. Recommendations for policy and practice that are grounded in a well-informed understanding of the roots of Deaf oppression in American society are offered.
The Nature of Risk: HIV/AIDS and the Deaf Community in the United States
Numerous structural forces shape and constrain the choices and behaviors of people who are Deaf in the United States. These forces may include under-representation in politics and policymaking, an historically under-resourced educational system, and discrimination rooted in communication barriers between hearing and Deaf individuals and communities (Crowe, 2003). Consequently, people who are Deaf in the United States frequently live in an environment of oppression that may foster risk of HIV infection. However, while people who are Deaf appear to be affected by HIV/AIDS in disproportionate numbers when compared to hearing persons (Friess, 1999), constructing the Deaf community as an AIDS risk group can be problematic. The approach in the public health model to study and to intervene among disease risk groups, while not without many merits, has also led to a distancing between the general population and the risk group at hand. In this way, AIDS risk groups become characterized by a set of assumed statuses, social positions and needs for intervention that are thought to be homogenous and inherent to the group. In turn, stereotyping spurs public definitions of the HIV epidemic as a problem that concerns others and not oneself (Schiller et al., 1994). This paradigm, which attributes HIV/AIDS to the social other, may lead to the further marginalization of infected individuals. It may also contribute "to the complacency [toward] and denial of the reality of risk of infection" (Ibid, p. 1344). Indeed, HIV/AIDS is something that potentially affects us all, whatever might be our social positions, our statuses, or in this instance, our functional abilities to hear. Therefore, rather than viewing people who are Deaf as a risk group per se, this paper aims to employ a sociopolitical lens to explore why individuals within the Deaf community in the United States may be likely to incur HIV infection. Key social, environmental, and political forces that construct risk of HIV infection for people who are Deaf and hard of hearing (HOH) are discussed. Methods of HIV/AIDS education and prevention, which are aligned with principles of universal design, are then offered.
The sociopolitical or minority perspective, as discussed by many disability studies scholars (Hahn, 1993; Lane, 2002; Oliver, 1984; Shapiro, 1993) focuses on the intersections between individuals and the environment. This is a perspective that variously conceptualizes the attitudinal, social, political or built environment as responsible for many of the obstacles that people with disabilities confront in our society. It is a model that recognizes disability as more than diagnoses and functional limitations and therefore suggests that disability be defined and measured within the environment that society constructs. Even if many in the Deaf world reject the label of disability for good reasons, the parallels between disability studies and Deaf studies run deep; both are concerned with how the outside society shapes culture, policies and practices, particularly those hostile to insiders among the populations studied (Lane, 2002; Dolnick, 1993). Subsequently, whether considering disability, or Deafness, or HIV/AIDS, it is important to turn toward the environment to assess its political, social, and attitudinal construction, and for whom those constructions were intended.
HIV/AIDS Prevalence in the Deaf Community in the United States
In the United States, there are approximately twenty to twenty-two million individuals who are Deaf or hard of hearing (Harmer, 1999) and there are approximately one million individuals living with HIV/AIDS (CDC, 2008). The Center for Disease Control does not disaggregate HIV/AIDS prevalence rates on the basis of hearing loss or deafness, and no other statistically reliable epidemiological estimates of the extent of infection in either the Deaf or HOH populations had been published as of 2005 (Y. Bat-Chava et al., 2005, and author were unable to find any figures published between 2005-present.) This lack of reliable information may be telling in its own right. Nevertheless, several studies do suggest that HIV/AIDS prevalence runs higher specifically among persons who are Deaf (Gaskins, 1999; Heuttel & Rothstein, 2001), and a number of authors have contended that persons who are Deaf receive inadequate prevention information and treatment (Peinkofer, 1994; Y. Bat-Chava et al., 2005; Heuttel & Rothstein, 2001).
Analyzing numeric risk is a necessary means of assessing the extent of the Deaf community's experience with HIV/AIDS, but as noted, the popularization and misuse of this approach can lead to further stigmatization and marginalization of infected individuals. As Irving Zola poignantly discussed, there are multiple ways of knowing about disability. Conceptualizing disability as a fixed and dichotomous status through the use of statistics rather than as a changing, evolving and interactive process fails to take into account the complexity of disability and subsequently can have negative implications in research, policy and advocacy (Zola, 1993). It is essential to begin conceptualizing and measuring disability in such a fashion so as to capture the interplay among people, resources and the environment. Moreover, using a sociopolitical lens in conjunction with an analysis of numeric risk may better reveal why individuals who are Deaf or hard of hearing could be disproportionately vulnerable to HIV infection. Such an approach might better specify the most important elements of the environment driving disparities in prevalence. This knowledge would serve as a strong foundation for designing and implementing effective interventions that would help to create a more accommodating environment for all.
Knowledge about sexuality, HIV/AIDS, and methods to prevent it are important in any community. As noted in a study published by the American Annals of the Deaf, there is a lack of accurate sexual knowledge among youth who are Deaf. More than 80% of the respondents in the study confirmed being sexually active (11% claimed to have had 10 or more sexual partners). Only one third of the participating college students reported using a condom during their most recent sexual encounter. The majority of the students surveyed expressed the belief that having a regular sexual partner eliminated the need for birth control. The most common type of birth control reported was withdrawal, followed by condoms and oral contraception. When tested on knowledge of human sexuality, the students correctly answered approximately half of the questions regarding ovulation, HIV, reproduction, and the effectiveness of different birth control methods (Job, 2004).
In addition to this apparent lack of accurate knowledge of sexuality, studies show that youth who are Deaf are frequently unaware of or misinformed about HIV/AIDS and how it is transmitted and prevented. College students who are Deaf are found to be significantly less informed about HIV/AIDS than their hearing counterparts (Heutell & Rothstein, 2001). Furthermore, studies on adolescents' knowledge of HIV/AIDS reveal that high school students who are Deaf have extremely limited core knowledge of AIDS, tend to be unaware of which behaviors place them at risk for infection, and have limited knowledge of transmission prevention (Baker-Duncan et al., 1997).
Within the Deaf community, there are numerous social and environmental factors that may influence lack of knowledge regarding sexuality and HIV/AIDS. Many youth who are Deaf find few opportunities to acquire information, and encounter inadequate school-based instruction, misinformation from family members and peers, and parental reluctance to provide sexual education (Job, 2004). People who are Deaf and hard of hearing may also have limited access to mainstream mass-information systems. Mainstays of the public health approach, such as television, radio, newspapers, magazines, the Internet, as well as commercials and advertisements may not fully reach the Deaf community because information via these systems is targeted at the general population who can hear and read a spoken language (Grace, 2005). More generally, given the dearth of specially adapted media and services in our society, individuals whose primary language (ASL) is visual rather than auditory may tend to become isolated. Such isolation can exacerbate information gaps between hearing people and people who are Deaf, and in turn, increase vulnerability to HIV exposure. Due to isolation as a result of communication barriers, people who are Deaf may have a greater reliance, relative to hearing individuals, on family members and friends for information about sexuality and HIV/AIDS. Personal sources of information are prone to containing inaccuracies and factual errors, particularly when technical subjects are discussed (Heuttel & Rothstein, 2001). Misinformation and limited knowledge may also be the result of a virtual absence of sexual education in curricula for students who are Deaf. To some extent, this may stem from the outside societies' misconceptions about sexuality and people with disabilities, such as the pervasive stereotype that people with disabilities are asexual (Job, 2004; Grace, 2005). Furthermore, similar to the "diagnostic overshadowing" that occurs in professional assessments of people with co-occurring conditions, the broader need for sexual education may be missed by professionals who focus too intently on their preconceived ideas about the needs of a patient (or student) who happens to be Deaf.
In keeping with a more traditional, public health approach, it should be noted that people who are Deaf may also be at greater risk of HIV/AIDS compared to hearing persons because of their higher rates of substance abuse; approximately 1 in 7 people who are Deaf have substance abuse problems compared to 1 in 10 in the hearing population (Peinkofer, 1994). Behaviors potentially associated with substance abuse, such as needle sharing and sexual promiscuity, could lead to increased risk of HIV/AIDS in the Deaf community, as they are said to do in other communities. Furthermore, Peinkofer attributes higher rates of substance abuse in the Deaf community to poor self-esteem, isolation, learned dependence, and deficient social skills (ibid). It is notable that each of these is an issue which may be linked back to a discriminatory social and attitudinal environment constructed by the hearing majority.
Moreover, high rates of sexual abuse among children who are Deaf may also increase their vulnerability to HIV/AIDS. Sexual molestation is a documented problem in schools for the Deaf (Vernon & Miller, 2002) and "problems of communication breakdown, fear of authority, and doubts of not being believed all contribute to the fact that a [Deaf] child will be far less likely to report to a parent or school official a situation of abuse" (Peinkofer, 1994, p. 393). Low rates of reporting not only have legal implications, but may also inhibit the availability of antiretroviral prophylaxis to these individuals. Youth who are Deaf may be all the more vulnerable to sexual molestation because they receive little to no sexual education. As a result, they may not know that having an adult engage in sexual relations with them is wrong, especially when the individual is an authority figure (Vernon & Miller, 2002). Hence, lack of sexual education may be an environmentally constructed risk factor for HIV/AIDS on numerous fronts.
Increased exposure to sexual abuse, coupled with substance abuse, and poor knowledge of sexuality and HIV/AIDS may all be factors that contribute to the numeric risk of HIV/AIDS infection in the United States' Deaf community. These contributing factors may be both a direct result of the social and attitudinal environment constructed by the hearing majority and a subsequent result of the impact of this discriminatory environment over time on individuals who are Deaf. In particular, the isolation that the dominant environment creates may have a significant psychosocial impact on people who are Deaf and may lead to engagement in "risky behavior" (in public health parlance) such as substance abuse. In addition, there are multiple barriers to education and prevention at the policy and implementation levels, where the needs of the Deaf community for sexuality and HIV prevention information and education are rarely considered.
Barriers to HIV/AIDS Education and Prevention for Individuals Who are Deaf
Some individuals who are Deaf may perceive themselves to be powerless in the political process, dominated as it is by hearing persons and their concerns. For the Deaf community, this perception, when coupled with a lack of linguistic access to those who influence policymaking and practice, creates barriers to full participation in political processes (Lane, 2002). Even as it is vital that the Deaf community be involved in the politics of HIV/AIDS, the insular nature of that community, nourished as it is through individuals' solidarity towards Deaf culture, may also restrict some routes for political advocacy. In the book Culture and Language Diversity and the Deaf Experience, Bateman discusses Deaf individuals' acceptance of their minority status and notes that for some, this entails a kind of resignation to the will of the dominant hearing majority. This sentiment significantly impedes Deaf advocacy efforts to construct a more equitable and accommodating environment for persons who are Deaf and hard of hearing. However, as noted by Batavia (1993), "one should not conclude that the blame for all problems of people with disabilities [or in this instance, people who are Deaf] falls exclusively on the individual or on society. It is typically some combination of both" (p. 3). Therefore, it is important to look at a Deaf individual's functional impairments as well as disabling attitudes of both Deaf and hearing cultures to address the disparity in HIV/AIDS prevalence.
Below, three issues of concern in HIV education and prevention in the Deaf community are examined from this standpoint: confidentiality in HIV testing and counseling, accessibility of educational materials, and dissemination of information.
Confidentiality is a key issue in HIV prevention work. However, physicians' offices and clinics rarely have health care providers who are fluent in American Sign Language and interpreting services are not always easily or freely available when needed. As a result, hearing family members or friends are frequently used as ad hoc interpreters in medical settings (Y. Bat-Chava et al., 2005). However, friends and family members are often not fluent enough in ASL to adequately interpret diagnoses and medical jargon, and additionally, they inhibit patient-provider confidentiality. Similarly, people who are Deaf often have concerns about confidentiality because professional interpreters may provide services to numerous individuals within the same community and could also be seen on other occasions (Ibid). One study found that students might choose not to receive an HIV antibody test because of their concerns about privacy (Ibid). With the advent of the HIPAA regulations in 1996, issues of privacy and confidentiality moved to the forefront of medical discourse and are now considered a right that all patients have (Annas, 2003). However, for individuals who are Deaf, this right may be compromised because of a non-accommodating environment. The consequences of these barriers are familiar. Individuals who are Deaf may become further marginalized and their access to education about HIV/AIDS, HIV testing, and other health issues may be impeded. It should be further noted that in the United States, people who are Deaf are not only a power minority, but also comprise a small number of the general population, which makes addressing problems like these all the more difficult. For example, there are only approximately 250,000 to 500,000 individuals who are Deaf or hard of hearing in the U.S. that use American Sign Language (Crowe, 2003).
Consequently, providing enough interpreters in medical settings throughout all the regions in the country such that the confidentiality of individuals who are Deaf is always ensured may not be an actionable intervention. However denying these individuals the confidentiality that the hearing majority enjoys is unjust; perhaps some progress is better than none at all. In the end, HIV prevention, education and treatment are a subset of a much broader canvas of health care and health-related policies of great importance to people who are Deaf. Increasing the public or private funding for sign language interpreters in health care settings, or passing new laws to insure the confidentiality of health care services for people who are Deaf, are each inherently political activities located in the larger society. While political activists may not at first be welcoming of individuals who are Deaf, nor the Deaf comfortable embracing political action, their signs must be seen on these political issues to bring about changes in health-care policies.
Accessibility of educational materials.
Communication, educational, and literacy barriers between the hearing and Deaf communities are pervasive. There are, for instance, large disparities between Deaf and hearing individuals' reading and writing levels, which complicate making HIV/AIDS educational materials more universally accessible. The average sixteen-year-old student who is Deaf reads at the level of a hearing eight-year-old, and when students who are Deaf leave school three out of four are unable to read a newspaper (Dolnick, 1993). Furthermore, most HIV/AIDS educational materials are written at an eighth grade reading and writing level and use few visual educational aids (Y. Bat-Chava et al., 2005). As a result, these materials are not always accessible to individuals who are Deaf.
Crowe's study, Using Focus Groups to Create Culturally Appropriate HIV Prevention Material for the Deaf Community, highlights many of the important issues for consideration when creating HIV educational materials that are accessible for the Deaf community. The data from this study illustrate how some individuals who are Deaf may not fully grasp the information of prevention materials, particularly when these materials are not matched to their cultural and linguistic needs. It is extremely important that visual images be provided and that ASL-structured word phrases be employed when creating these materials (Crowe, 2003). Indeed, these design principles would benefit not only persons who are Deaf, but persons with a variety of disabilities. Our society's failure to create these educational materials according to basic universal design principles highlights the false assumptions made under the traditional public health risk group model, all the more so since doing so would not be expensive.
Dissemination of information.
As signified in the upper case D, Deaf people "share a culture rather than merely a medical condition" (Dolnick, 1993, p.38), and pivotal to their unwavering cultural solidarity is their pride in American Sign Language (ASL), for "the essence of deafness… is not the lack of hearing but the community and culture based on ASL. Deaf culture represents not a denial but an affirmation" (Ibid, p. 43). Living in a larger world that frequently misunderstands them, individuals who are Deaf are often very connected to their Deaf community. However, this cohesiveness may also limit the transmission of HIV/AIDS knowledge. Because of the many educational and communication barriers described earlier, people who are Deaf often learn new information from one another rather than from formal sources. For example, one study shows that respondents who are Deaf are seven times more likely to receive information about HIV/AIDS from their friends than are their hearing peers (Y. Bat-Chava et al., 2005). On the one hand, this so-called "Deaf grapevine" can be an effective means of disseminating information. On the other, the sole reliance on this grapevine for information can result in misunderstandings and gaps in knowledge, confidentiality problems, and reluctance by some individuals to use needed services (Peinkofer, 1994; Gaskins, 1999). Hence, finding innovative means to engage the grapevine, and to inject it with accurate knowledge and handles for access to formal services, would seem to be a promising avenue in Deaf community HIV prevention.
Applying a sociopolitical model to explore how some members of our society are made disproportionately vulnerable to HIV infection sheds light on numerous social, environmental, and political forces that construct risk of HIV infection for people who are Deaf and hard of hearing. By revealing these factors within a discriminatory environment that perpetuates risk of infection, the sociopolitical model brings to light a number of needed initiatives that alternatively supplement, re-orient or transcend the current public health, risk group approach to disease prevention. While some of these initiatives do need to be tailored specifically to the needs of the Deaf community, a number of them will provide benefits to various hearing constituencies as well. Below is a brief list of such recommendations for policy and practice. It is not intended to be comprehensive, but exploratory.
- HIV/AIDS education materials and methods need to be designed in American Sign Language and should use visual tools such as pictures, videos, role-playing exercises and small group meetings conducted by peer educators who are Deaf. Moreover, because of the cultural cohesion of the Deaf community, all education materials should be developed in partnership with individuals who are Deaf. Materials should specifically include:
- Pamphlets that provide written explanations along with visual images and ASL-structured word phrases
- American Sign Language HIV videotapes with actors signing in addition to open captioning
- Posters that include people who are shown signing to one another and that are specifically related to HIV/AIDS and Deafness.
- Sexual and HIV/AIDS education programs should be introduced in all school-based-instruction for the Deaf, be it in mainstream or residential schools. This education should be designed to provide youth who are Deaf with accurate knowledge about safe sex practices and HIV/AIDS prevention. Additionally, such education should be designed with the goal of reducing sexual abuse of children who are Deaf.
- The Deaf cultural grapevine needs to be utilized as a means to disseminate accurate information on HIV/AIDS and prevention as well as on available resources and potential advocacy channels. In conjunction, the public health system and political process need to become more accessible and welcoming of people who are Deaf.
- Health care providers and community health clinics need to increase their knowledge base and resources to do HIV prevention with persons who are Deaf and hard of hearing. This includes learning more about the service needs of individuals who are Deaf as well as about available accommodations, such as interpreter services and assistive technologies. Funding for these services should be better addressed.
- Substance abuse should be addressed in its own right within the Deaf community through school-based instruction for the Deaf as well as through small group meetings conducted by peer educators who are Deaf. Additionally, clean needles and knowledge of where to obtain them should be made easily available to people who are Deaf.
- Confidential HIV testing coupled with psychological counseling by individuals fluent in American Sign Language needs to be made easily accessible to individuals who are Deaf.
This paper argues that the Deaf community is not an "AIDS risk group," but rather that they are deeply impacted by many factors and barriers that are the result of a discriminatory social, attitudinal, and political environment. The socio-political perspective also reveals prevention initiatives and approaches that might otherwise be missed. The separation of the Deaf and hearing worlds is at the crux of these matters. Ill-informed attempts to apply the standard public health education model to the Deaf community will likely fail. Yet the development of appropriate, culturally competent and accessible methods of education and prevention hinges on the involvement of all parties, people who are Deaf very much included. Without the mutual engagement of both the public health sector and the Deaf community itself, HIV infection among people who are Deaf and hard of hearing may remain, as Schiller et al. (1994) suggest, someone else's problem.
I would like to thank Stephen Gullley, Sarita Bhalotra and Marti Dembowitz for their advice and comments on earlier drafts of my paper. Their feedback was invaluable
Margot Moinester is an undergraduate at Brandeis University studying Health: Science, Society and Policy, and after graduation, plans to work on domestic health care issues.
- Annas, G. (2003). HIPAA regulations — A new era of medical-record privacy? The New England journal of medicine, 348,15, 1486-1490.
- Baker-Duncan, N., Dancer, J., Detholyn, G., Highly, P., & Gibson, B. (1997). Deaf adolescents' knowledge of AIDS. American annals of the deaf, 142, 268-372.
- Batavia, A. (1993). Relating disability policy to broader public policy: Understanding the concept of handicap. Policy studies journal, 21,4, 734-739.
- Bat-Chava, Y., Martin, D. & Kosciw, J.G. (2005). Barriers to HIV/AIDS knowledge and prevention among deaf and hard of hearing people. AIDS care, 17,5, 623-634.
- Bateman, G. C. (1996). Culture and language diversity and the deaf experience. New York: Cambridge University Press.
- Crowe, T.V. (2003). Using focus groups to create culturally appropriate HIV prevention material for the deaf community. Qualitative social work, 2,3, 289-308.
- Centers for Disease Control (2008). HIV/AIDS in the United States. Retrieved June 20, 2008, from http://www.cdc.gov/hiv/resources/factsheets/us.htm.
- Dolnick, E. (1993). Deafness as culture. The Atlantic monthly, 37-53.
- Friess, S. (1998). Silence=Deaf, in the translation from English to sign language, HIV education loses something: Lives. POZ magazine, 60-63.
- Harmer, L. M. (1999). Health care delivery and deaf people: Practice, problems, and recommendations for change. Journal for deaf studies and deaf education, 4,2, 73-110.
- Hahn, H. (1993). The political implications of disability definitions and data. Journal of disability policy studies, 4,2, 41-55.
- Heuttel, K. L. & Rothstein, W. G. (2001). HIV/AIDS knowledge and information sources among deaf and hearing college students. American annals of the deaf, 146,3, 280-286.
- Gaskins, S. (1999). Special population: HIV/AIDS among the deaf and hard of hearing.Journal of the association of nurses in AIDS care, 10, 75-78.
- Gill, C. (2001). Divided understandings, The social experience of disability. Handbook of disability studies. CA: Sage Publications.
- Job, J. (2004). Factors involved in the ineffective dissemination of sexuality information to individuals who are deaf or hard of hearing. American annals of the deaf, 149,3, 264-273.
- Lane, H. (2002). Do deaf people have a disability? Sign language studies commentary, 2,4, 356-379.
- Minow, M. (1990). Making all the difference, inclusion, exclusion, and American law. Ithaca: Cornell University Press.
- Oliver, M. (1984). The politics of disability, A sociological approach. NY: St. Martin Press.
- Peinkofer, J.R. (1994). HIV education for the deaf, a vulnerable minority. Public health reports, 190, 390-396.
- Schiller, N. G., Crystal S., & Lewellen, D. (1994). Risky business: The cultural construction of AIDS risk groups. Social science and medicine, 38,10, 1337-1346.
- Shapiro, J.P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.
- Stevens, H. (1998). AIDS, not hearing AIDS: Exploring the link between the deaf community and HIV/AIDS. Health and human rights, 2, 4, 99-113.
- Vernon, M. & Miller, K. R. (2002). Issues in the sexual molestation of deaf youth. America annals of the deaf, 147, 5, 28-36.
- Zola, I.K., (1993). Disability statistics, What we count and what it tells us. Journal of disability policy studies, 4, 2, 9-39.
Instructors' Statement: Generations, Ripple Effects and the Meaning of Legacy: A Note on Teaching the Sociology of Disability
Stephen Gulley Ph.D., MSW, with Samantha Watson, MBA
I have taught the course "Sociology of Disability" at Brandeis University for the past seven years. Together with my absolutely irrepressible TA, Samantha Watson, we read the better part of 40 term papers each semester. We learn something new from each and every one of them, and we always regret that we are the only audience they receive. There is a kind of spark which occurs when one delves deeply into a topic about which one is passionate, when one struggles to bring the concepts into line, when one reaches to find the right words, and when one is then pushed draft by draft to make the argument even tighter still. Tended well, that initial spark can lead a person to all kinds of interesting places, particularly when the focus is disability. Below, Samantha and I present the work of one of the many students who fully embraced the "doing" of academic thinking and writing this past semester, who learned hand over fist in the process, and who taught their teachers much along the way.
A universally recognized quality of the teaching endeavor is the ripple effect it can stir as the lessons learned pass from one generation to the next. The history of this course at Brandeis is replete with these effects. It was originally conceptualized and taught by Irving Kenneth Zola, the man who lit the disability studies spark for both of us, directly in my case, and indirectly in Samantha's. Irv (as he insisted on being called) was, among so many other things, a medical sociologist, a public policy scholar, a leader of the self-help and independent living movements, a man who could speak openly about his feelings, a story teller, and above all, a teacher who cared deeply about the well-being of his students. Today, Samantha and I are both fully cognizant of how important it is to carry on with this work now that he is gone, and fully aware that we can never replace what Irv offered us all, nor would we try. As for me, I met Irv when I was an undergrad myself back in the 80s, just a few short years after surviving a car accident which resulted in my wheelchair use. To make a long story short, that meeting was the spark that lit my disability pride and began my career.
Many years later, and after we lost Irv, I was a student again pursuing my doctorate at Brandeis. When I heard that Professor Marty Krauss, a close colleague of Irv's, would begin teaching the Sociology of Disability class again, I practically begged to be her TA. Very much under her guidance, we went back through copies of his syllabi and assignments and tried, as best anyone really could, to rebuild the course in his vision. Of two things I am sure.
First, Irv would certainly recognize the class as his own, even given the incredible changes (for the better and the worse) we have seen in the disability world since his passing. The core themes of his course remain just as salient today: We examine the processes of medicalization, the social construction of disability, the role of the environment in producing disability and limiting participation, the cultural transmission of messages which "invalid"-ate people with disabilities, the power public policy holds over the resources people with disabilities need to thrive in the community, and the intersectional nature of disability within and among other social hierarchies, while we also affirm the importance of narrative and lived experiences in value transformation.
In order to do justice to these themes, we designed the new course in the way I imagine Irv would have encouraged us to do: drawing on works not only from sociology, but also from history, psychology, political science, public health and yes, even medicine itself. We also took to employing guest speakers on a variety of topics, always trying to bring the voices of people with firsthand experience into the ivory tower, without asking them to speak for all people with disabilities. In this way, these themes, these voices, and this work are still making ripples at Brandeis.
Second, I am sure that I hit the mark sometimes, and missed it plenty, too. I was only beginning to learn how to lecture, and Professor Krauss was a patient mentor with me, teaching me how to be up in front of so many incisive students. Truth is, that still scares me sometimes. But here's the thing: Irv would have been the last person in the world to beat me up for making mistakes. He'd simply want me to keep trying, and he'd probably find some really unexpected way of making me laugh at myself and feel all the better for being a human being at the same time. That was his way, and I suspect it was a big part of what made him a fantastic teacher. As a rule, Irv never pulled rank. Whether you had no formal education whatsoever or held three Ph.D.s, he had this way of honoring the important work you were doing. Whatever that work was and wherever you were doing it, Irv reminded you that you held a hand in making things better, and had the power to do so.
But there are two more generations and more ripples to consider here. If Irv was part of the first generation and I am part of the second, let me tell you about an alumna of our class who is of the third generation, just now coming into its own. During that first year being a TA, I met a rather incredible student. She had a very particular reason in mind for taking our class. She had been diagnosed with bone cancer during the middle of her senior year and was returning to school having completed seven rounds of intense treatment. Early on in the semester, she pulled Professor Krauss and me aside to explain that she wanted to take the class because she had a lot of questions on her mind about what it meant to have "survived" cancer. She said she was going about the business of trying to fit back into being a college student after all she had seen during treatment, and she figured she could use the class as a way to process at least some of her experiences. Some three hundred students later, I have yet to see anyone so aggressively read every last article, hang on every last word in the class, and hang around after class to talk as much as this student did.
After a second diagnosis and subsequent treatment, she returned to Brandeis, went on to earn her masters degree, and started a nonprofit to raise money to support young survivors of cancer. Last year, that nonprofit distributed over $250,000 to help young adults who struggle after treatment with such things as medical debts, college tuition, rent, and all the other things that charities raising money for cures tend to forget that survivors of cancer will need. By the way, her name is Samantha (she insists on Sam), and it is her boundless energy and insight that I have called on for the past four years to help me teach this class.
But finally we come to what will one day be the fourth generation. Just as Sam never met Irv, neither will these students, but the ripples he cast will reach them as surely as they did Sam and me alike. Indeed, this fourth generation has grown up much influenced by the works of the disability activists and scholars before them. They have never known a world where children with disabilities were excluded wholesale from public schools or were locked up in places like the Fernald school right down the street from Brandeis. In fact, some of them were born in the year the ADA was passed. Most of them know people with disabilities don't want pity and are more than ready to think about disability as a matter of diversity and civil rights. Most telling of all, many of our students have disabilities, whether hidden or apparent. And while some have their struggles with shame and stigma, a surprising number come to our door out, loud and proud. Mind you, I am a cynic by training. But there are some truly good reasons for optimism here.
We are happy to have the opportunity to present an example of the work of this next generation. In "The Nature of Risk: HIV/AIDS and the Deaf Community in the United States," Margot Moinester lays bare some of the hidden assumptions of the public health model, questioning for whom HIV/AIDS prevention was designed. We must also acknowledge the incredible work of another student, of whom we believe Irv would be proud. In the manuscript, "The Individuals with Disabilities Education Act: Evolving Philosophies, Goals and Implications for Students with Disabilities," Marti Dembowitz traces the pendulum-like swing of inclusion and exclusion of students with disabilities in the classroom over the past thirty years. Space limitations did not permit publication of this piece, but we highly recommend it to readers interested in education policy. It can be obtained via request to email@example.com.
What interesting places will this fourth generation visit? What ripples will they cast and what will be their legacy? These are matters for them to determine for themselves. But I will say this much: When this generation comes into its own, we will be in good hands.
Stephen Gulley teaches in the Health, Science, Society and Policy program at the Heller School at Brandeis. He is a health policy researcher for the Rehabilitation Medicine Department at the NIH Clinical Center in Bethesda.
Samantha Watson is the Executive Director of Surviving And Moving Forward: The SAMFund for Young Adult Survivors of Cancer. She holds an MBA in Nonprofit Management.