Morrison’s Space: A DeafBlind Activist

Our History: Erasure, Resistance, and the Truth We Carry

March 21, 2026

For centuries, DeafBlind people have been treated as if our lives were an afterthought—small, tragic, non‑existent, or unworthy of belonging. Instead of being recognized as full human beings with our own languages, cultures, and ways of existing, we were pushed into institutions, separated and isolated from society, and denied access to communication. Early “services” were built to manage or control us, not to understand us, learn from us, work with us, or support our autonomy.

Across schools, workplaces, healthcare, and public spaces, systemic barriers have kept DeafBlind people on the margins: no interpreters, no tactile access, no transportation, no technology designed with us in mind. Decisions about our lives have been made by hearing and sighted professionals, charities, and agencies, while our own leadership, expertise, and community knowledge were dismissed or ignored. This remains true in many spaces today.

And yet, DeafBlind people have always resisted. Even inside oppressive systems, we created our own ways to communicate, developed our own languages, shared tactile knowledge, built community, and organized for our rights in education, employment, healthcare, and daily life. Today’s DeafBlind justice movements grow from this long lineage of survival, resistance, and collective care.

This page exists to explore that history, document our present, and imagine the futures we are building together.

A History of Oppression and Misunderstanding in DeafBlind Livelihood

March 21, 2026

The history of DeafBlind livelihood has been shaped less by inherent limitations than by persistent patterns of misunderstanding, exclusion, and institutionalized bias. Across education, research, service provision, and public policy, DeafBlind people have often been framed through a medical‑rehabilitation lens rather than as a diverse community with distinct languages, cultural practices, and forms of expertise. This framing narrows the imagination of what thriving can look like, sidelines tactile‑first communication, and cements systems that make decisions about DeafBlind lives without meaningfully including DeafBlind leadership (Shakespeare, 2013; Oliver, 1990).

A canonical example of how a single story constrains understanding is the cultural centering of Helen Keller as the emblem of DeafBlind success. Keller’s accomplishments are notable, but her privileged access to intensive one‑on‑one instruction, social capital, and speech‑centric pedagogy has often been misread as a universally applicable pathway. This eclipses a broader record of DeafBlind leadership, from Laura Bridgman (recognized in the 1830s for tactile literacy) to Ragnhild Kåta (a European pioneer in DeafBlind education), Robert Smithdas (a national policy leader in the United States), Haben Girma (a civil rights lawyer reframing accessibility obligations), and John Lee Clark (a key organizer and theorist of the Protactile movement) (Aas, 1999; Clark, 2023; Girma, 2019; HKNC Archives; Nielsen, 2004). Treating Keller as the template has subtly reinforced ableist assumptions, prioritizing speech, residual vision/hearing, and mainstreamed deaf/blind (deaf as a standalone disability and blind as a standalone disability, not deafblind as a dual diabilities) modalities, over DeafBlind‑defined communication such as Tactile ASL, Protactile language, tactile practices (print on palm, mix tactile communication methods), braille for speech to text support, and, for some, Tadoma (tactile speech perception; which is rarely used today) (Clark, 2023; Reed et al., 2012).

This ableism operates alongside audism (the privileging of and favoring hearing and speech) and vidism (the privileging of and favoring sight), shaping research methods, educational standards, and access regimes (Humphries, 1977; Jay, 1993; Lane, 1992). Within the medical model, DeafBlindness becomes a condition to be rehabilitated, and outcomes are frequently measured by proximity to hearing/sighted norms. In contrast, the social model situates disability in the environment – attitudes, policies, funding, and design choices that either enable or block participation (Oliver, 1990; Shakespeare, 2013; World Health Organization [WHO], 2011, 2022). The dominance of the medical model has thus led to studies and services that misunderstand DeafBlind culture, tactile communication, and community knowledge – and, critically, to decisions made about DeafBlind people without the inclusion of DeafBlind leaders themselves (Kusters et al., 2017; Shakespeare, 2013).

This governance gap is visible in national institutions. The Helen Keller National Center (HKNC), while established to serve DeafBlind people, has historically been led by non‑DeafBlind administrators. DeafBlind advocates have repeatedly called for DeafBlind‑led governance to align authority with lived expertise and to counter paternalistic decision‑making. Public critiques contend that retaining non‑DeafBlind control perpetuates ableist frames and undermines community self‑determination, an outcome arguably at odds with Keller’s own commitments to disability rights and self‑directed agency (Girma, 2019; HKNC Archives; Nielsen, 2004). More broadly, when institutions center non‑DeafBlind expertise, DeafBlind priorities such as tactile language access, Protactile pedagogy, intervener services, CoNavigator servicers, and leadership pipelines, are more easily marginalized (Clark, 2023; Kusters et al., 2017).

Education systems illustrate how these dynamics materialize. Under‑identification of DeafBlind students is a documented, recurring problem; child counts are uneven and screening tools often fail to capture combined hearing‑vision disability, leading to misclassification into deaf or blind service tracks rather than DeafBlind‑specific supports (National Center on Deaf‑Blind [NCDB], 2023; Office of Special Education Programs [OSEP], 2004). Even when students are correctly identified, many schools lack trained interveners, tactile language interpreters, DeafBlind‑specialized teachers, DeafBlind Specialist who are DeafBlind themselves, and DeafBlind mentors. The Council for Exceptional Children (CEC) and the NCDB have emphasized intervener services as foundational to access, communication, and learning, yet credentialing pathways and funding vary widely across states, resulting in inconsistent implementation under the Individuals with Disabilities Education Act (IDEA) (CEC & NCDB, 2019; McCarthy & Murdoch, 2015; NCDB, 2020). The predictable result is diminished language development, academic opportunity, and social participation for DeafBlind students, harms rooted not in being DeafBlind itself but in system design (CEC & NCDB, 2019; NCDB, 2023).

A critical but often overlooked piece of this systemic picture is data. Globally, we cannot confidently state the exact population of DeafBlind people. Estimates vary dramatically depending on definitions (e.g., congenital vs. acquired, degrees of hearing-vision disability), age structures, and methodologies. The World Federation of the Deafblind (WFDB) reports a prevalence range of 0.2% to 2% of the population, reflecting both narrow clinical criteria and broader dual‑sensory disability across the lifespan (WFDB, 2018, 2023). This wide interval underscores two problems: first, the absence of standardized, inclusive definitions and tools; second, a lack of sustained investment by governments and researchers in DeafBlind‑appropriate data collection (including tactile‑accessible methods, community‑based participatory approaches and that are led by those who are DeafBlind). When data systems are limited, research scope narrows, funding follows incomplete maps, and policy design defaults to hearing/sighted paradigms. Moreover, when studies are dominated by non‑DeafBlind researchers unfamiliar with DeafBlind lived experiences, languages, spaces, and priorities, they often miss essential questions about thriving; for example, what effective communication access looks like in practice, how tactile sociality organizes information, and what leadership pipelines and credentialing are needed (Kusters et al., 2017; WHO, 2022; WFDB, 2018).

The consequences extend into law and compliance. While the Americans with Disabilities Act (ADA) and Section 504 require “effective communication” and auxiliary aids, implementation frequently centers visual or auditory accommodations rather than tactile‑first modalities (e.g., DeafBlind interpreters – interpreters trained to work with DeafBlind individuals, tactile language, Protactile language, tactile-based and deafblind centric access teams, haptic navigation through various technologies) (U.S. Department of Justice, 2010; U.S. Access Board, 2017). Administrative structures – licensure rules, reimbursement policies, and procurement standards are rarely recognize DeafBlind‑specific competencies (such as Protactile interpreting, generalized DeafBlind interpreting, CoNavigator and intervener specialization), constraining hiring and funding for DeafBlind‑led roles (CEC & NCDB, 2019; NCDB, 2020). These forms of administrative gatekeeping help explain why Deaf and Blind communities, which often benefit from self‑led institutions, have more robust leadership pipelines than the DeafBlind community: authority and investment follow recognized credentials and governance, which, in the DeafBlind case, remain underdeveloped or externally controlled (Lane, 1992; NCDB, 2023).

Against this backdrop, DeafBlind communities have built thriving practices from within. Protactile pedagogy reframes access around touch, co‑presence, and shared sensory environments, challenging visual and auditory dominance in design and research (Clark, 2023; Kusters et al., 2017; Nuccio & granda, 2013). Tactile languages and technology based haptic communication systems expand expressive range and social coordination; artistic and literary movements assert cultural identities; and advocacy networks push for DeafBlind leadership across schools, services, and policymaking (Andrews et al., 2018; Girma, 2019). These achievements make the central lesson unmistakable: the core problem is not being DeafBlind, but systemic misfit – institutions that misunderstand DeafBlind livelihood and underfund the means by which it flourishes (Oliver, 1990; Shakespeare, 2013).

A just research and policy agenda must therefore re‑center DeafBlind leadership, invest in tactile‑first infrastructures, and overhaul data practices. Concretely, this means standardizing DeafBlind‑inclusive definitions and measurement, resourcing community‑based participatory research led by DeafBlind scholars and DeafBlind professionals, mandating intervener and CoNavigator credentialing and funding across jurisdictions, and recognizing Protactile interpreting and generalized DeafBlind Interpreting within licensure and reimbursement frameworks (CEC & NCDB, 2019; NCDB, 2020; U.S. Access Board, 2017; WFDB, 2018, 2023). Only by restructuring authority and methods around DeafBlind expertise can ensure research become accurate, ensure schools are equitably accessible, and institutions are held accountable (WHO, 2011, 2022).

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References

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Andrews, J. F., Hamilton, H., & Rusher, M. (2018). Tactile communication practices with deafblind adults. American Annals of the Deaf, 163(2), 185–210.

Clark, J. L. (2023). Touch the future: Pro‑Tactile tools, techniques, and theory. Gallaudet University Press.

Council for Exceptional Children, & National Center on Deaf‑Blind. (2019). Intervener services in early intervention and education for children who are deafblind (Updated ed.). Author.

Girma, H. (2019). Haben: The deafblind woman who conquered Harvard Law. Twelve.

Helen Keller National Center. (n.d.). About HKNC [Organizational materials and biographies].

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Jay, M. (1993). Downcast eyes: The denigration of vision in twentieth‑century French thought. University of California Press.

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Lane, H. (1992). The mask of benevolence: Disabling the Deaf community. Alfred A. Knopf.

McCarthy, M., & Murdoch, H. (2015). Interveners and access to education for deafblind students. Journal of Visual Impairment & Blindness, 109(4), 301–312.

National Center on Deaf‑Blind. (2020). Personnel preparation and credentialing for interveners. Author.National Center on Deaf‑Blind. (2023). National child count of children and youth who are deaf‑blind. Author.