Language of Disability

Ayesha Mysorewala

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.