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CFT Alumna Emam published in Family Therapy Magazine

"Disability as a Cultural Experience"
by Parisa Emam '15 (Couples and Family Therapy)
reproduced with permission from Family Therapy Magazine, May/June 2016

Models of disability

Activists behind the Americans with Disabilities Act (ADA) created a global standard for disability access and civil rights over 25 years ago. Despite this achievement, the U.S. culture at large continues to view disability as solely a medical, rather than cultural, phenomenon. This is especially relevant to note in the field of mental healthcare, as disability can be situated in a medical context and often remains absent from conversations about social inequity. Couple and family therapy systemic lens, which emphasizes context and relational interaction, can expand the cultural competency of the healthcare system by creating space for disability as a social experience.

Disability scholars illuminated the dominant discourse surrounding disability (Lewis et al., 1975), naming it the medical model of disability. The medical model suggests that an individual’s physical condition causes their disability. For example, a client’s cerebral palsy is viewed as a medical issue that limits the client’s ability to function in day-to-day life. As a result, the disability becomes a problem residing within the individual. While the medical model of disability prevails in U.S. culture, couple and family therapists must call into question any framework that pathologizes the individual rather than attending to contextual factors.

In contrast with this medical model, the social model emerged as a subjugated story of disability. The social model posits that external barriers limit participation in society and foster a climate of oppression. It is these barriers that actively disable individuals, rather than their physical condition. Examples include a client using a wheelchair who might be disabled by a building entrance with no ramp; widespread prejudice about the suitability of disabled people as romantic partners; or discriminatory hiring practices in the workplace. In bumping up against constant inaccessibility and inequality, people with disabilities can be viewed through the social lens of “encountering problems rather than having a problem” (Sue & Sue, 2013, p. 51).

Disability as a social phenomenon also encourages the view of disability as a cultural experience. By expanding the view of disability to include cultural identity, therapists acknowledge client experiences that are unique to marginalized group membership. For example, a therapist can recognize that a client’s identification as Deaf (with a capital D) denotes that they belong to Deaf culture, a community with its own language, history, and social norms. Additionally, this affiliation between disability and culture reminds therapists that disabled people as a community experience prejudice, discrimination, and daily slights. There must be recognition that people with disabilities experience microaggressions. Sue and Sue (2013) use the term microaggressions to define everyday messages that communicate inferior status to marginalized individuals and reinforce their otherness, regardless of intention. Knowing this, mental health practitioners must acknowledge that a client’s most painful and challenging experiences with disability may have less to do with their physical condition than with their experience of microaggressions.

Medical family therapy (MedFT) and disability

The emerging field of MedFT illuminates the role of family systems in disability and illness. Yet, the field grants little space to the concept of disability as a cultural experience. In a review of MedFT literature from 1965 to 2004, Linville, Hertlein, and Prouty Lyness define MedFT as a systems-informed, biopsychosocial-spiritual approach to care that spans clinical disciplines (2007). The authors identify common themes that emerge from the body of MedFT research, including the correlation between a client’s significant relationships and their physical health. In particular, Linville and colleagues cite several studies that identify a link between relational quality and physical well-being (2007). As systems therapists, I believe we ought to expand beyond the microsystemic level of interpersonal relationships. We can broaden our understanding of illness and disability by zooming out to examine macrosystemic influences on health. For example, how does dominant cultural discourse surrounding illness and disability interact with the family system? How do constructs like microaggressions, societal barriers, and structural inequality affect our clients’ relational well-being? The social model of disability can be an asset in this expansion of MedFT, as it already provides a framework for understanding disability in the context of social systems.

Clinical approach

Despite the overwhelming size of the disability community, family therapy students receive scant amount of training in working with this population from a cultural lens. Given that the term “disability” encompasses psychiatric, cognitive and developmental conditions in addition to physical conditions, students can expect to work with clients with disabilities across the span of their careers. Thus, they would benefit from specific training and supervision surrounding disability culture. Couple and family therapy programs can look to experts in the disability community for guidance in incorporating culturally-relevant course material. This may include collaboration with the university’s disability studies program, mental health providers who specialize in working with disability, or a local disability organization or ADA chapter. Training must emphasize intersectional issues in the disabled community, as clients with disabilities are more likely to live in poverty, experience abuse, and face barriers to needed services.

Additionally, family therapy programs must seek out—and sufficiently accommodate—students with disabilities. Programs must dismantle barriers that prevent disabled students from applying to, attending, and succeeding in higher education. As with any marginalized group, disabled people have unique insights and lived experiences to contribute to therapy and the field as a whole. For example, as a disabled therapist, I have received referrals from clients who preferred to work with a person with a disability. Clients have shared that one of the most meaningful aspects of our therapeutic relationship is my ability to empathize with disabled existence.

Furthermore, couple and family therapists can attend to self-of-thetherapist issues to identify implicit biases against disability. The dominant cultural discourse in the U.S. equates disability with poor quality of life. Therapists must examine their own biased associations between disability and inadequacy, abnormality, and fear of mortality. By unveiling the hidden messages we have absorbed about disability as something to be concealed, cured, or eliminated, we dismantle harmful beliefs that impede effective work with our clients. I envision my attendance to self-ofthe- therapist issues in the room using Eve Lipchik’s “dual track thinking” concept (2002). While one track of my mind engages with client data, the other attends to my own cognitive and emotional responses to the data. For example, one track may register a client’s comment “Nobody will want to be my partner because of my disability,” while the other track notices responses such as, “I feel sad that this client does not yet have a sense of disability pride; I want to challenge this belief without minimizing her lived reality of being overlooked as a potential partner.”

Couple and family therapy as a field emphasizes the importance of incorporating a client’s beliefs in clinical decision-making. In working with clients with disabilities, therapists can incorporate client data by looking to their clients for preferred language. For example, some people with disabilities prefer person-first language (language that positions the person before the disability), while others prefer identityfirst language (language that highlights the disability as an identity, often through capitalizing the first letter of the disability). By looking to disability activist communities for guidance, family therapists can learn the most up-to-date terminology for people with disabilities, while avoiding words that are archaic, paternalistic or offensive (such as handicapped, special needs, or crippled).* Additionally, therapists should engage with disability culture through community events, media, and social action to broaden their disability competency.

Many in the disability community remember activist and attorney Harriet McBryde Johnson’s New York Times article, “Unspeakable Conversations” (2003). In the article, McBryde Johnson contrasts her worth as a human with Princeton Professor Peter Singer’s assertion that parents should be able to euthanize disabled babies. In response, McBryde Johnson stresses “…choice is illusory in a context of pervasive inequality. Choices are structured by oppression.” Our disabled clients exist in a context of oppression, in an environment structured by the belief that disabled lives are not worth living. It is up to us as therapists to acknowledge this context. As Michael White notes, couple and family therapists do not have to be “… condemned to the role of unwitting accomplices in the reproduction of the dominant social order” (2011, p. 52). We can create experiences for our disabled clients that do not reinforce microaggressions (and macro threats to existence) experienced elsewhere. We can make overt the influence of oppressive discourse on difficult decisions surrounding healthcare, caregiving, and other facets of disabled life. We, as systems therapists, can actively choose to name the systems of pervasive inequality that restrict disabled clients’ autonomy. And in the process, we can enhance the mental health field’s competency in serving this community.


References

Lewis, P., Stueland, B., Taylor, C., Townsend, P., Davis, K., Finkelstein, L., Finkelstein, V., & Hunt, P. (1975). The Union of the Physically Impaired Against Segregation and the Disability
Alliance discuss fundamental principles of disability [pdf]. Retrieved from http://disability-studies.leeds.ac.uk/files/library/UPIAS-fundamental-pr....

Linville, D., Hertlein, K. M., & Prouty Lyness, A. M. (2007). Medical family therapy: Reflecting on the necessity of collaborative healthcare research. Families, Systems, & Health, 25, 85-97. doi: 10.1037/1091-7527.25.1.85

Lipchik, E. (2002). Beyond technique in solution-focused therapy. New York, NY: The Guilford Press.

McBryde Johnson, H. (2003, February 16). Unspeakable conversations. The New York Times. Retrieved from www.nytimes.com.

Sue, D. W. & Sue, D. (2013). Counseling the culturally diverse: Theory and practice. Hoboken, NJ: John Wiley & Sons, Inc.

United States Census Bureau (2012, July 25). Nearly 1 in 5 people have a disability in the U.S., Census Bureau reports. Retrieved from https://www.census.gov/newsroom/releases.

White, M. (2011). Narrative practice: Continuing the conversations. New York, NY: W. W. Norton & Company.