Marguerite Schneider

The difference a word makes: responding to questions on ‘disability’ and ‘difficulty’ in South Africa

Purpose. This article discusses the current efforts to measure disability in a comparable manner internationally, the effects of using different types of wording in questions, and the implications of the approach of asking about ‘difficulties’ rather than ‘disability’ on the use of disability statistics. Method. The study design was qualitative. Twenty-one focus groups were run with adults responding for themselves. Nine groups were classified a priori by the author as ‘disabled’, six as ‘unsure’, and the last six as ‘non-disabled’. The participants completed a questionnaire using the Washington Group on Disability Statistics (WG) Short Set, the South African Census 2001 question, and the question ‘Are you disabled?’. This was followed by group discussion on these questions and on how the concept of disability is understood by group participants. Results. Participants understand disability as being a permanent, unchangeable state, mostly physical, and where a person is unable to do anything. The participants in the three groups of allocated disability status (disabled, unsure and non-disabled) provided quite different responses on the three questions. All participants in the ‘disabled’ and ‘unsure’ groups reported having ‘difficulty’ on the WG questions, but the ‘unsure’ groups did not identify as being ‘disabled’ on either of the two other questions. Conclusions. Using questions that ask about ‘difficulty’ rather than ‘disability’ provides a more comprehensive and inclusive measure of disability with a clearer understanding of what is being measured. Asking about ‘difficulty’ provides an improved measure of disability status for effective data collection and analysis to promote development, implementation and monitoring of disability-inclusive policies.

HIV/AIDS and disability organisations in South Africa

Abstract Despite the seriousness of the HIV epidemic globally, and in South Africa in particular, little is known about how HIV/AIDS affects disabled people. One important and little explored area is the role that organisations that represent disabled people or that work on behalf of disabled people, are playing in addressing the HIV/AIDS epidemic among the disabled people they represent or serve. This paper presents the findings of a nationwide survey of disability organisations in South Africa. The purpose of this study was to explore the role of disability organisations in addressing the HIV epidemic among disabled people in South Africa. The findings suggest that while organisations recognise the importance of providing HIV education, and many have taken steps to do so, disabled people are largely excluded from general HIV prevention messages. Disabled people also have significant difficulties in accessing general health care, relevant for HIV testing and treatment. In a country trying to manage serious social problems with limited resources, this paper highlights the need for increased cooperation and collaboration between relevant parties in order to facilitate the changes necessary for disabled people to access needed health information and care.

Factors related to environmental barriers experienced by persons with and without disabilities in diverse African settings

This paper explores differences in experienced environmental barriers between individuals with and without disabilities and the impact of additional factors on experienced environmental barriers. Data was collected in 2011–2012 by means of a two-stage cluster sampling and comprised 400–500 households in different sites in South Africa, Sudan Malawi and Namibia. Data were collected through self-report survey questionnaires. In addition to descriptive statistics and simple statistical tests a structural equation model was developed and tested. The combined file comprised 9,307 participants. The Craig Hospital Inventory of Environmental Factors was used to assess the level of environmental barriers. Transportation, the natural environment and access to health care services created the biggest barriers. An exploratory factor analysis yielded support for a one component solution for environmental barriers. A scale was constructed by adding the items together and dividing by number of items, yielding a range from one to five with five representing the highest level of environmental barriers and one the lowest. An overall mean value of 1.51 was found. Persons with disabilities scored 1.66 and persons without disabilities 1.36 (F = 466.89, p < .001). Bivariate regression analyses revealed environmental barriers to be higher among rural respondents, increasing with age and severity of disability, and lower for those with a higher level of education and with better physical and mental health. Gender had an impact only among persons without disabilities, where women report more barriers than men. Structural equation model analysis showed that socioeconomic status was significantly and negatively associated with environmental barriers. Activity limitation is significantly associated with environmental barriers when controlling for a number of other individual characteristics. Reducing barriers for the general population would go some way to reduce the impact of these for persons with activity limitations, but additional and specific adaptations will be required to ensure an inclusive society.