"Disability is both a cause and consequence of poverty. Eliminating world poverty is unlikely to be achieved unless the rights and needs of people with disabilities are taken into account" (DFID 2000)
"The real repositories of local knowledge on disability in particular countries are the disabled people that live there" (Metts, 2000: xv)
Definitions:
Impairment: An individual’s condition – physical, sensory, intellectual or behavioural.
Disability: A complex system of social restrictions imposed on people with impairments resulting in a denial of rights and equal opportunities.
Background
Are Disabled People Invisible to CPRC Researchers?
WHO estimates that 10% of any population is disabled. A proportion of disabled people living in chronic poverty is likely to be considerably higher. Therefore any research that does not include at least 10% of disabled people of respondents or not be a representative sample of those living in chronic poverty.
Whilst few research or development organisations would consider working with all male respondents or beneficiaries, it is still common practice to work with only non-disabled people. This is despite recognising that disabled people are disproportionately among those living in chronic poverty.
Traditional research often involves wealthy non-disabled outsiders questioning people about their lives. This is not a reliable way of getting information where there are big power differences and where questioners are not trusted or known friends. To get consent is not sufficient as few people in situations of poverty and exclusion will refuse to be questioned by those with more power and authority. It is therefore essential that disabled people set and control the agenda for research.
It is rare that this exclusion is intentional. Generally it is for lack of experience in using inclusive methods. Possible ways in which disabled people may be excluded:
Venue may be:
- physically inaccessible
- not a place where disabled people are used to going
- not a place where disabled people are socially accepted or feel comfortable
Disabled people are frequently excluded from basic health care/education/employment. It is therefore not easy to find representative numbers of disabled people if these places are used to gather respondents. It is therefore suggested that a number of different venues are used and that attention is paid to asking who else exists in a household who is not present at a gathering.
Methods
PRA often depends on visual methods and therefore excludes those with visual impairments.
Verbally asking questions of respondents will exclude those with hearing impairments unless an interpreter is also present. Furthermore many of those deaf people living in chronic poverty may not have had access to learn sign language. Therefore communication will take longer and will be more difficult. However it is possible if time and effort is put in and friends or relatives of the deaf person are willing to help.
Any research that relies on respondents getting to a particular location is unlikely to be accurate. Many disabled people living in chronic poverty do not get out of their homes let alone reach the regular meeting places of the community.
Members of a community may deny the existence of disabled people, as disability is often considered a stigma and disabled people are often not considered as whole people. Furthermore as disabled people are frequently excluded from the day-to-day activities of the community, they may easily be forgotten by other members.
People with learning difficulties will be excluded unless simple, clear information is given. This may involve communicating with other members of the household as well as the disabled person themselves.
See Save the Children's "Access for All - Helping to make participatory processes accessible for everyone". Full pdf document: www.eenet.org.uk/bibliog/scuk/access_for_all.pdf
Summary
It is important that a mixture of different methods and venues are used in order to include everybody. It may take extra time and resources to ensure that disabled people are included. However if this is not done, the research will not be representative of those living in chronic poverty.
In some cases it may be appropriate to get help from other members of the household when trying to communicate with a person with learning difficulties or a deaf person. However this should be an aid to, never instead of, communicating with the person themselves.
A medical classification system of impairment, but NOT disability, can be found at www3.who.int/icf/onlinebrowser/icf.cfm, the World Health Organisation's International Classification of Functioning, Disability and Health.
Revising the United Nations Census - Recommendations on Disability
Margaret Mbogoni and Angela Me - United Nations Statistics Division
This paper considers the different approaches to the gathering of statistics on disability. It describes the huge variations in prevalence rates of disability, depending on the type of question that is asked.
Countries that have used questions addressed to household members individually are 5 times as likely to find high prevalence rates than those that have used household level questions. In many societies there is a stigma attached to reporting disability. Respondents are therefore often reluctant to admit the presence of disabled people in the household and interviewers tend not to ask about disability unless a disabled person is clearly visible during the interview. The choice of response categories should be evaluated to ensure that respondents are not forced to associate themselves with a stigma.
Sliding scales should be considered rather than a simple yes/no option. The wording of the question has a great effect on the output. The same words have different connotations in different cultures.
To increase the policy relevance of data on disability, the census recommendations urge countries to go beyond simple tabulations of numbers of disabled people to include also information on e.g. socio-economic characteristics, levels of education and the living conditions of disabled people in comparison with non-disabled people.
Excerpts from paper prepared for the 1st meeting of the Washington Group on Disability Statistics (Feb 2002). The full paper is available here.