A Measure Of Change

Putting Literacy And Disability In Perspective

by Marcia Rioux, Ezra Zubrow, Adele Furrie, Wendy Miller and Mary Bunch

A research project soon to be released by the Canadian Abilities Foundation uses mapping to bring a spatial perspective to the issues of literacy and disability in Canada.

But the spatial perspective is not the only one highlighted in this National Literacy Secretariat-funded project.

As many people in the disability community recognize, there are different ways to understand, interpret and measure “disability”; the same is true for the concept of “literacy.” This is one of the reasons why both literacy and disability are difficult concepts to operationalize in surveys - a challenge that is the focus of numerous working groups around the world.

With this in mind, our project - The Geography of Literacy and Disability in Canada -compares different data sets to see how different ways of interpreting and measuring these two concepts shape the spatial perspective.

One of the objectives of this project is to bring together disparate datasets that measure literacy, disability or both concepts to examine the similarities and the differences that result when different questions are used to operationalize these two concepts.

As we can see on the map, four different surveys result in four different disability rates for the same population. This is because in surveys measuring disability, the way disability is defined, the kinds of questions asked and the methods used in collecting and analyzing the data affect the overall findings.

The same is true for measurements of literacy. Further, the definitions of both literacy and disability that are operationalized in statistics have been shifting in the past few decades in ways that are strikingly similar. Former surveys counted the numbers of people who were literate versus illiterate, or who had some form of “impairment” or “disorder.” Contemporary surveys measure whether or not a person is restricted in his or her day-to-day functioning because of reading and writing skills (in the case of literacy), or because of impairment (in the case of disability). For example, rather than simply asking if a person can read and write, the International Adult Literacy Survey (IALS) measures the degree to which people have the reading and math skills they need to get by in their daily lives. Similarly, contemporary disability surveys measure whether people experience limitations in their daily activities because of an impairment, rather than whether or not they have an impairment.

Changes in the way of measuring literacy and disability in surveys result from changes in ways of thinking about literacy and disability and ongoing efforts on the part of survey designers to refine the operationalization of these concepts. Formerly, both disability and illiteracy were seen as problems in the individual that needed to be cured, fixed, or compensated for. Today’s standards reflect the social belief that the experiences of disability and literacy are not problems in the individual but, rather, these experiences involve a relationship between individuals and their environments.

Ideally, a survey would include questions to identify the population with disabilities that reflect this new standard, as well as questions to measure this emerging concept of literacy. This “ideal” dataset would enable the exploration of the relationship between the two. However, in Canada today, this is not the case. Disability surveys do not include questions that measure this new concept of literacy, and literacy surveys do not contain questions that measure the new standard for defining disability. Consequently, the research relies on both surveys with a disability or literacy focus, and requires the extrapolation of findings across different data sets.

The attached map illuminates the difficulties involved in comparing data sets using different disability measures.

The International Adult Literacy Survey (IALS) is accepted as the best current literacy measure. IALS shows the highest disability rate in every province. This is because it simply asked respondents to identify whether or not they have a disability through questions such as, “Do you have an eye/visual problem?” Since this is very broad question, the numbers of people answering “yes” was very high. The resulting disability rate is not considered very reliable.

Surveys with a specific interest in disability, such as the Health and Activity Limitation Survey (HALS), the Participation and Activity Limitation Survey (PALS) and the National Population Health Survey (NPHS), use more complex approaches to disability measurement, based on an understanding of disability as the experience of activity limitations.

The HALS disability rate is based on 32 screening questions asking if people experience limitations in their daily living, and if a person answered yes to even one of these questions, they were considered to have a disability. PALS used a similar approach to HALS, but limited the sample to include only those individuals who answered at least one “yes” to the 2001 Census of Population disability questions. The NPHS, which included disability in a range of health issues experienced by Canadians, asked questions such as, “Do you have any long-term disabilities or handicaps?”, along with a different and less extensive series of questions pertaining to health limitations.

Thus, while each survey is measuring limitation in activity, each one operationalizes the concept using different sample designs and different questions.

The differences between HALS, PALS and NPHS are not as significant as the difference between these three surveys and IALS. One of the possible reasons for this difference is that IALS was measuring whether or not a person had an impairment, whereas the other surveys were measuring restrictions experienced in relation to an impairment or health problem.

Faced with no ideal dataset, the research will use a spatial perspective to bring together the “best” disability data (HALS, PALS and NPHS) with the “best” literacy data (IALS) to begin the examination of the relationship between disability and literacy.

This project introduces the application of a human rights perspective to analysis of literacy and disability surveys. In this perspective, the focus is on whether or not a person experiences barriers to realizing their rights, equality and full participation in society due to social structures that fail to accommodate their differences in terms of an impairment or level of literacy skill. The project looks at the surveys with these questions in mind in order to discover how well Canadian society is succeeding in including all of its citizens, regardless of impairment or literacy skill. The process is described in more detail in an article entitled “Barriers and Accommodations” in the last issue of ABILITIES.

This project reflects the continuation of a long process of changing conceptions and measurement of literacy and disability within Canadian society. The findings of the research are expected to bring significant new insights to the design and interpretation of disability and literacy surveys in Canada and elsewhere.