The Census Bureau Needs to Start Counting Us

Stock photo of a crowd viewed from aboveOn December 19, 2023, CommunicationFIRST asked the US Census Bureau to begin formally counting the estimated 5 million people in the US who need and use augmentative and alternative communication (AAC) tools and supports to be understood.

The Census Bureau asked for comment about a proposed new speech-related question on the American Community Survey (ACS): “Using his or her usual language, does this person have difficulty communicating, for example understanding or being understood?

(ACS data are used to determine how public services and funding is provided to different populations and locations. The current survey asks 6 disability questions, none of which can be used to count people with speech disabilities: hearing difficulty, vision difficulty, cognitive difficulty, ambulatory difficulty, self-care difficulty, and independent living difficulty. While many people who need and use AAC will fall under several or even all of these categories, some will not fall under any, including several AAC users on CommunicationFIRST’s Board, Advisory Council, and staff. And even if an AAC user can be counted under one or more of the hearing, vision, cognitive, ambulatory, self-care, and independent living categories, it is currently impossible to count US residents who may need supports to accommodate their speech disabilities.)

When we are not counted, we are ignored.

It is a good thing that the Census recognizes that people who need and use AAC are not counted in the ACS, and that a speech-related question is needed. However, we noted that while we applaud the Bureau’s intent, the wording of the proposed question is fundamentally flawed." (The proposed question reads: “Using his or her usual language, does this person have difficulty communicating, for example understanding or being understood?”)

We gave multiple reasons for why we oppose that question, including that it mixes up the concepts of speech, language, expressive communication, receptive communication, cognitive processing, and more. The question would also provide data that would further skew policymakers’ and the public’s understanding of such individuals. It also would perpetuate the fallacy that having little to no understandable speech is certain evidence that a person cannot understand others. Thus, the question in its current form provides almost no actionable information for policymakers, public health officials, the disability and aging communities, or the public.”

We proposed the Bureau consider the following options instead:

Does the person have difficulty speaking or using speech to be understood by others?

Does the person use gestures or an aid to be understood? 

We also said that the Census Bureau should include similar questions to count persons who have difficulty understanding others.

Read our full comments here: 2023-12-19 C1st US Census ICR Comments