Federally Funded Research About AAC Needs to Change

Last month, CommunicationFIRST submitted extensive input to one of the largest federal government funders of AAC-related research — the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) — on its proposed 2024-2028 Long Range Plan. In these comments, among other points, CommunicationFIRST shared the following:

Flawed and Biased Historical Research: Flaws and biased “research” conducted over the years and paid for with federal funds continue to be used to justify the unspoken indignities, mislabeling, abuse, and violence many of our members endure endlessly. Pursuing new knowledge to end this cruel cycle is vital. The federal government and NIDILRR specifically also must engage simultaneously in a restorative justice process that reveals both the harm that still is being inflicted based on such “research” and the immediate and long-term actions that will be taken to repair such wrongs and to prevent future ones.

Civil Rights Laws Are Failing Us. Laws like the Civil Rights Act of 1964, Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act, and the Americans with Disabilities Act are failing us. These laws are not implemented nor enforced in a comprehensive manner necessary to safeguard and secure the rights, liberties, and lives of all people who require AAC of all races and circumstances.

Insufficient Demographic Data on People Who Need AAC: The federal government refuses to gather national, state, and local data on the numbers, needs, and status of individuals with communication disabilities, including those who need AAC. Federal statistical and research agencies seem to believe maintaining absolute statistical consistency with respect to what survey questions are asked is more important than counting and being accountable to us. As an agency with a stated commitment to becoming a leader in anti-ableist research, NIDILRR cannot condone the government’s refusal to gather and use zip code level data to improve the lives and equal opportunities of people with significant expressive communication disabilities.

Target Populations: We strongly urge NIDILRR to explicitly include “communication disability” as a target population in its final plan.

Focus on Intersectional Oppression: We strongly urge NIDILRR to solicit and fund participatory action R&D projects that address the following:

      • The fact that the need for a person to access and use AAC can occur at any point in their lifetime.
      • The fact that research suggests that systemic oppression means Black and other multiply marginalized persons may be more likely to acquire this need as adults.
      • The fact that all people who need AAC are at significant risk of being denied it, institutionalized, socially isolated, and subjected to intersectional oppression as soon as the need arises throughout their lives.

CommunicationFIRST calls on NIDILRR to make clear in the final plan that generating new knowledge that debunks ableist and intersectional oppression is among its more important aims. We strongly urge NIDILRR, ACL, their grantees, and federal partners to conduct R&D efforts designed to identify the root causes of this intersectional discrimination, and promising practices that may be useful in redressing them.

Understanding and Combating Speechism: CommunicationFIRST believes R&D efforts focused on better understanding and combating speechism are vital and can aid in identifying strategies for conducting disability justice research that is readily generalizable across many different topics. We strongly urge NIDILRR to solicit and fund such research.

Disproportionate Educational Segregation: Students who need AAC continue to be disproportionately exiled to and “educated” in separate schools and residential institutions.

Participatory Research Techniques Must Be Used: CommunicationFIRST strongly urges that people who need AAC, our families, organizations, and allies be effectively engaged in every phase, facet, and role affecting such research, including as co- and principal investigators.

Language => Social Determinant of Health + Discrimination + Segregation: Being recognized and treated as individuals who use and understand language is a vital social determinant of health. People who have little to no speech that others can understand are nearly universally branded as “deficient,” or void of the ability to communicate: To use words and sentences to make ourselves understood by others. Such ableism subjects many such individuals to being barred access to AAC, lifelong isolation, egregious discrimination, and substandard health care and health outcomes, among a great many other harms.

Rates of Unemployment: The vast majority of young people, working age, and older adults who need AAC experience lifelong joblessness and are instead subjected to segregated Medicaid-funded day programs, subminimum wage employment, unjustified isolation, learned helplessness, and social death.

The full set of CommunicationFIRSTs comments to NIDILRR can be accessed here: 2023-10-13 and 2023-10-31 C1st Comments on NIDILRR Long-Range Plan.