Friday, 31 May 2019

The language of disability

By Ayesha Mysorewala and Saba Aslam

Source: Pakistan Population Census report (1998). Pakistan Bureau of Statistics

Globally, the dialogue on disability has made a lot of progress. The 2006 UN Convention on the Rights of Persons with Disabilities (UN CRPD) marked an important shift in the discourse on disability by moving away from taking a medical approach towards a social model of disability. The social model suggests that “the barriers individuals face are not a result of their impairments (that the problem is not the individual), but that the barriers are created by society, attitudes and the physical environment”.[1] If a person with a disability (PWD) is able to exercise rights through for example, inclusive education, accessible transport, and has equal opportunities to work at public or private institutions, this may imply a social model of disability or a rights-based approach.

We argue that language used for disabilities has a key role in shaping barriers and access to an inclusive society.

A recent report by the British Council that focused on mainstreaming young Pakistanis with disabilities finds that persons with disabilities (PWDs) are often overlooked in discussions about Pakistan’s future. This is despite the fact that Pakistan has ratified the UN CRPD in 2011.

One manifestation of our collective lack of focus on disabilities is a lack of vocabulary and understanding for disability in local languages, including Urdu.

While conducting qualitative fieldwork for an ongoing project “Mainstreaming Inclusive Resilience in South Asia”, we were investigating the experiences of vulnerable groups, including PWDs, in natural disasters in Sindh. We found that there are varying understandings in communities regarding who counts as disabled. In surveys, this makes it very difficult to effectively identify PWDs.

Our team tried to establish a common vocabulary to discuss how communities understand disabilities. The Urdu word mazoor was an obvious choice (which has also been used in the Urdu questionnaire of the previous census). In qualitative interviews, however, this induced an image of a person who has physical impairments. Probing into specific types of disabilities led us to find that many categories such as hearing and/or speech impairments are not perceived as disabilities unless they prevent a person from engaging in productive work.

The problem of researching intellectual disabilities is even more complex. Communities themselves offered terms to us during the qualitative interviews. Disempowering words such as charyo and pagal were mentioned by a number of respondents to identify and describe extreme forms of intellectual disabilities, which to some extent indicates a culture of stigma and pity. In Sindhi speaking areas, we settled on using the word Jaddo (impairments) to enquire about disabilities. This created room to discuss more subtle intellectual disabilities such as slow learning in schools. It was clear, however, that people did not identify the latter as disabilities or mazoori. This led us to conclude that disability is constructed in a social context.

There is the additional complexity of variations in meaning attached to local terms in different contexts. Many of the local terms (including the ones mentioned above) are deeply rooted in the specific historical context of different communities, which warrants an entirely separate blog. The implication, however, is a need to exercise nuance in the meanings we attach to the terms that are used.

The lack of local metaphor to describe the concept of disabilities have implications for research and policy. The most significant one is the underreporting of PWDs.

The Pakistan Demographic and Health Survey (PDHS) 2017-18 follows an International Classification of Functioning, Disability, and Health that covers six core domains – seeing, hearing, communication, cognition, walking and self-care and disaggregates impairments, which is useful as respondents are asked about their level of difficulty in each of the domains. However, the 1998 census[2] reports mental disabilities in two categories: insanity and mental retardation[3] which may reinforce stigma, and make it less likely for respondents to report disability.

Undercounting in turn reflects a weak emphasis on needs of disability in policy and its implementation. Most legislative changes that have occurred are subject to the 1981 Disabled Persons Employment and Rehabilitation Ordinance, which deals mostly with setting quotas for PWDs in jobs. Post-devolution amendments to the Ordinance, however, focus on creating accessible infrastructure, providing special identity cards and expanding cash assistance to PWDs. Even though there are few laws that address broader issues of social exclusion at the national level.[4], we find that Sindh Empowerment of Persons with Disabilities Act 2018 and Balochistan Persons with Disabilities Act 2017 follow a social model of disability. The Sindh 2018 Disability Act is particularly exceptional as it stresses on inclusion of PWDs in all institutions. It is not clear however, the extent to which these legislations are implemented.

There are no comprehensive records of PWDs at local administrative levels such as districts and Union Councils. There is also a lack of sensitization around disability amongst local government officials and the district and Union Council levels. In our discussions with communities, we found that this leads to great deal of exclusion of PWDs and their needs in evacuation and relief measures, and adds greater burdens on already distressed households in disaster-prone areas. It also leads to inappropriately designed interventions by organizations funded by donors who pressurize an emphasis on disability without it being internalized by those implementing the programmes.

There is a need to foster open debate on disability and establish a more contextualized understanding and empowering language for various kinds of disabilities at all levels. Comprehensive legislation in all provinces (and its tracking) would be an excellent step. However, there is still a long way to go in moving from a culture of neglect and stigma around disability to one that focuses on empowerment and rights. Perhaps the first step can be thinking about how we talk about PWDs in our everyday conversations.

[1] The Economist Intelligence Unit. (2014). Moving from the Margins: Mainstreaming Persons with Disabilities in Pakistan.

[2] Full reports on disability from 2017 census are not yet publicly available

[3] The Mental Health Ordinance of 2001 provides a relatively comprehensive set definitions of intellectual impairments. Gilani et al (2015) argue that this law outdated archaic and imprecise terms such as lunatic, insane and asylum

[4] Special Citizens Act (2008), for example, states that PWDs shall be provided access at all public places such as reserved seats in public places and in transport

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