During my sabbatical, one of my goals has been to start learning ASL. As I mentioned in a prior post, this effort was briefly accelerated by the loss of my voice in November, but I have continued to take ASL classes well past that experience and am now a student in ASL 103. In addition to the language, these classes have introduced aspects of d/Deaf culture I was not previously aware of. One concept in particular, Deafhood, and its parallels to modern disability justice and culture, really resonates with me.
Deafhood is a reaction to the historical trauma and oppression of d/Deaf people and community that became particularly acute during the mid to late 1800s when Oralism began to forcibly replace sign language education around the world, something that would continue for about a century (Ladd, 2003; Murray & Greenwald, 2010). Hereditary deafness combined with acceptance, culture, and language, unimpeded, had the potential to nurture strong, integrated, and positive communities such as found in Martha’s Vineyard (Groce, 1985). Yet the Oralist movement tore this apart.
In this same time period, the “science” of eugenics came to the fore in America, fed both by prejudice and advances in scientific understanding, led by scientists such as Mendel and Darwin (Nielsen, 2012). These beliefs were used as a basis for excluding immigrants (and fed into racial bias and stereotyping) (Nielsen, 2012), including d/Deaf immigrants, but their impact on Americans with disabilities was even more profound. Forced sterilization, institutionalization, experimentation and murder became “acceptable” practices imposed on people with disabilities (Nielsen, 2012; Sheffer, 2018).
For d/Deaf people and communities, a twist of fate may have provided some protection from the worst of the eugenics movement: Alexander Graham Bell, whose mother and wife were deaf, was an influential participant in the eugenics movement. Although an advocate for Oralism and eugenics both, perhaps because of his personal relationships, he argued against “negative” eugenics (meaning forced sterilization, institutionalization and worse) for d/Deaf people, and instead developed a policy centered on “positive” eugenics — breaking the genetic line, so to speak, by discouraging intermarriage (Greenwald, 2009). Although he may have provided some protection, Deafness was certainly still mentioned in forced sterilization laws across the country, and eugenics of any sort, combined with Oralism, extremely harmful to d/Deaf people and community.
Intellectual capability, and the ability to support oneself financially, were both reasons given for the eugenics movement — essentially that people with disabilities were somehow harming society/non-disabled people by being less intelligent, and independent, than their counterparts (all false assumptions). Ironically, d/Deaf people in Martha’s Vineyard had above average income (Groce, 1985, p. 50), something Oralism (with its negative impacts on education), and lack of community, could only hurt. Although Oralism was no longer the only option by the time Paddy Ladd began his 2003 ethnography, “Understanding deaf culture”, the legacy of this history of colonization and oppression remains today. Further, one might argue that it is now codified in the medicalization of “treatment” for deafness, i.e. the focus of medical professionals counseling families with deaf children to use cochlear implants, a technology literally designed to improve the effectiveness of oralism, over ASL (Kite, 2020).
Ladd’s ethnography, in which he coins the term Deafhood, is a theory of culture grounded in the Deaf experiences of identity, language, and society. Ladd, and by extension Ladd’s definition of Deafhood, recognizes that identity is a process. As described in the definition on deafhood.org, “Deafhood as a journey that a Deaf person undertakes to discover his, her or their identity and purpose in life.” This journey is not an isolated, individual experience but rather a reframing, and recreation of a rich, linguistic, humanistic culture which is also engaged in a radical act of self definition.
I see many parallels between Deafhood and other cultures that have arisen from the ashes of erasure and oppression. As the comedian Hannah Gadsby remarks in her show Nanette, in describing her experience of oppression as a child,
“When you soak a child in shame, they cannot develop the neurological pathways that carry thought… you know, carry thoughts of self-worth. They can’t do that. Self-hatred is only ever a seed planted from outside in. But when you do that to a child, it becomes a weed so thick, and it grows so fast, the child doesn’t know any different. It becomes… as natural as gravity.”
Similarly, questions about self worth are deeply influenced by our cultural and individual historical treatment of disability, particularly in Western culture during the industrial revolution and beyond. Disability is not only a minority identity that through eugenics and other means was hidden and erased, but even worse, disability was the justification for erasing, enslaving, and institutionalizing people from many other minoritized identities (Nielsen, 2012). Even the Deaf community tried to distance it from disability due to disability’s stigma (Nielsen, 2012, p. 136). The legacy of these attitudes and policies remains today, with the prison population, for example, having a much higher rate of disability than average, and disability feeding into the school to prison pipeline (Mahon-Reynolds & Parker, 2016).
Although it lacks a literal common language, or a name, I would argue that similar to Deafhood, there is a movement toward a disability cultural identity connected to the disability justice movement, what I chose to call A11yhood in the title to this post. As Neil Marcus writes in his poem, “Disabled Country”, “If there was a country called disabled / I would be from there / … / In my life’s journey / I am making myself / At home in my country” This journey is based in shared experience, as highlighted in the movie Crip Camp. It is also political in nature — one might argue that modern disability culture is rooted in activism, which began at least as early as 1935 (Nielsen, 2012, p. 133) and continues today. The rise of the independent living movement created cultural centers for people with disabilities in many cities, further strengthening this change. Today, disability culture plays out on social media, with strong voices such as Alice Wong (Wong, 2020) and Imani Barbarin, as well as collectives such as Sins Invalid (Berne, 2018) leading the way.
Similar to Deafhood, I have observed the journey implicit in a modern disability justice identity in my own journey into acceptance and power as a disabled woman; and in the transformation a disability identity has provided to the multiple people I have offered it to as an explanatory frame for their disability experience. I have seen the power of this, particularly in settings that integrate community and support, as well as activism and advocacy. Each of us must learn about our identity, and purpose, and power, as disabled people. We must learn the vocabulary of community, of oppression and of activism. We must learn A11yhood.
Ladd, P. (2003). Understanding deaf culture. In Understanding Deaf Culture. Multilingual Matters.
Murray, J. J., & Greenwald, B. H. (2010) How the Past Informs the Present: Intersections of Deaf History with Deaf Studies. Deaf Studies Today! (Volume 4)
Nielsen, K. E. (2012). A disability history of the United States (Vol. 2). Beacon Press.
Sheffer, E. (2018). Asperger’s children: The origins of autism in Nazi Vienna. WW Norton & Company.
Greenwald, B. H. (2009). The real “toll” of AG Bell: Lessons about eugenics. Sign Language Studies, 9(3), 258-265.
Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Harvard University Press.
Kite, B. J. (2020). How the medical professionals impact ASL and English families’ language planning policy. Psychology in the Schools, 57(3), 402-417.
Mahon-Reynolds, C., & Parker, L. (2016). The overrepresentation of students of color with learning disabilities. DisCrit—Disability studies and critical race theory in education, 145.
Nicole Newnham and James LeBrecht. Prod. (2020) Crip Camp: A Disability Revolution. Dir. by Good Gravy Films and Higher Ground Productions,. 108 mins. (https://cripcamp.com)
Wong, A. (Ed.). (2020). Disability visibility: First-person stories from the twenty-first century. Vintage.
Berne, P., Morales, A. L., Langstaff, D., & Invalid, S. (2018). Ten principles of disability justice. WSQ: Women’s Studies Quarterly, 46(1), 227-230.