With the 2020 Census around the corner and proposed changes to it highly politicized , I want to hold up to everyone – especially my fellow food ethnographers – how important recent changes in how “we count,” count!
For example, prior to the 2010 Census, we did not know how many blind and visually impaired people were living in the US because the Census did not disaggregate “sensory impairment” data and lumped blind and Deaf people together into one category. Yet, their needs vis a vis food access and security would be quite different, such as reading tiny nutrition labels or communicating with the cashier. Thankfully this hard-fought change was successful, and supports the development of policy solutions for various subpopulations.
As an applied anthropologist and disability studies scholar, these issues are important to me—and many others: approximately 20% of working-aged adults have some form of impairment or disability. Moreover, the tight relationship between poverty and disability means that there is a high percentage of impairment (and by extension, disabled people) in the low-income and disenfranchised populations that many of us work with, even if we don’t look for it or ask about it directly.
I have been arguing for over 10 years that access to food is much harder for disabled Americans than for their non-disabled counterparts (see Eat, Drink, and Inclusion) But there were no large-scale national datasets that either collected or de-aggregated their data in such a way to prove this. So I was thrilled to see the Census report released in 2013 that confirmed the problem of a “dietary divide.”
These census data show that nearly one-third (31.8%) of all U.S. households with food insecurity included a working-age disabled adult and nearly 38% of households with very low food security included a working-age disabled adult. By comparison, 12% of households with no working-age disabled adults were food insecure. The census also demonstrated that food insecurity is an issue even when disabled people were employed: over 20% of households with a disabled adult who was working full-time were food insecure.
These statistics are incredibly valuable. Yet, these do not fully capture the extent of food insecurity for disabled people.
One, these likely underestimate the problem, as the census data cited above are self-reported. The census numbers might not accurately reflect the number of people who have highly stigmatized conditions (such as cognitive or psychiatric impairment); mental health issues are often not acknowledged, let alone disclosed, and many other hidden/non-visible disabilities are frequently underreported. Estimates of rates of mental illness alone range from 20-80% of the general population, with certain segments, such as veterans and college students, experiencing a disproportionate amount of that burden. Further, ethnographic accounts have illustrated that there are many disabled people – people with impairments that would qualify as “disabled” under the ADA (Americans with Disabilities Act) – who do not identify as disabled, including people with everyday health problems, such as a “bad back,” hypertension, migraines, and chronic pain, as well as those whose membership in this category is temporary (e.g., see Webber et al). These conditions will affect how often someone can get to the market or how many groceries they can carry home, yet these people most likely would not have been included in the 2013 census numbers.
Two, the data only include non-institutionalized adults, thus leaving out several key populations. Keywords here are “adult” and “institutionalized.” The census data does not include disabled children or any seniors (people 65 and older) – and seniors represent the largest demographic of disabled people in the U.S., even if culturally we prefer to consider these people “elderly,” rather than impaired. Nor does it include the many disabled working-aged adults who are living in group homes, larger institutions, and nursing homes, or who are incarcerated. The DOJ estimates that imprisoned people are 3-4 times more likely to report having a disability as the non-incarcerated population. There is every reason to believe that food insecurity is as bad, if not worse, for institutionalized disabled persons. Nothing about the care of people in institutions generally, nor the history of the treatment of disabled people in this country, would suggest otherwise.
These numbers are only part of the picture. These statistics do not describe the qualitative ways in which disabled people’s experiences accessing food is different from that of non-disabled people, nor does it address other aspects related to food insecurity beyond food acquisition, such as cooking and food preparation, inclusion and commensality that accompanies dining, or the development of cultural identities (e.g., adulthood status) linked to independent food choice. Yet, research suggests that disabled people experience additional barriers shopping, cooking, and dining. For more, see an executive summary of my #EatDis research, AND stay tuned to this blog.
Elaine Gerber is a medical anthropologist and disability studies scholar who works at Montclair State University. She formerly served as the Senior Research Associate at the American Foundation for the Blind and as President of the Society for Disability Studies.