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

Monday, 6 May 2019

Women activists and their turn to the courts

By Ayesha Khan

Hina Jilani, a renowned lawyer and leading activist in Pakistan's women's movement speaking at World Conference of Women's Shelters, 2015
Photo Courtesy: Hina Jilani

Women’s activists in Pakistan have a strong tradition of turning to the courts to advance their rights, and in the process edifying the courts, government, public and media along the way. Along with my colleagues Sara Malkani (an advocate of the High Court and representative of the Center for Reproductive Rights) and Zonia Yousuf at the Collective, we have spent many months collecting documentation and conducting interviews with activists (mainly members of Women’s Action Forum (WAF)) to understand how and why they have turned to the courts even during very dark periods in our nation’s history.

Naysayers (and there is no shortage of them here) would argue, why bother with a corrupt judiciary and an even more corrupt political establishment? No one really believes in the rule of law! True, even Prime Minister Imran Khan recently promised to preserve the jirga system in erstwhile FATA even after the Supreme Court explicitly declared tribal jirgas unconstitutional in January this year. This final judgment from Saqib Nisar ended a story that began with activists petitioning against jirga in Sindh, which declared them unconstitutional in 2004, and followed with petitions to the Supreme Court filed by the National Commission on the Status of Women (2012) and the KP government (2018), all invoking our fundamental rights (including Article 10A, right to a fair trial) and demanding women’s protection from customary practices, honour killings, and other crimes sanctioned by this retrogressive remnant of our so-called culture.

But if you were a woman in Pakistan, and found yourself accused of zina during the 1980s, you surely would have wanted Asma Jahangir or Hina Jilani to fight for you and invoke, as they often did, Article 25 (equality of citizens) and Article 4 (right of individual to be dealt with in accordance with law) of your fundamental rights in your defence. You would surely be relieved to know they won almost all of their thousands of cases before it became virtually impossible to file charges of zina when the law was finally amended in 2006.

And if you were Rukkaiya Iqbal, filing the first ever case under the new 2013 domestic violence law in Sindh, surely it would be a profound relief to see your abusive husband jailed and sentenced for his years of violence towards you, and you would be grateful that Karachi advocate Sara Malkani believed in the courts enough to argue your case even though it would be the first time the judge had ever heard of the new law.

We all know that rape trials almost never end in conviction, but since activists fought so hard, despite protestations from the Council of Islamic Ideology, to have the law changed, politicians finally passed the 2016 Anti-Rape Law to make DNA testing mandatory in cases of rape. This, too, was on the back of a constitutional petition on the use of DNA testing, filed by Salman Akram Raja and activist Tahira Abdullah in 2012, to mandate improvement in investigation and trial procedures. Now it is hard to believe there was ever any argument about the admissibility of DNA as evidence.

And it bears mentioning that an adult woman’s right to marry out of her own free choice was fiercely contested in the 1990s, when the cases of Saima Waheed, Humaira Butt, and two hundred others were heard by the Lahore High Court, while the media and public alike were transfixed by the spectacles of these young women turned on by their fathers for refusing to be married off against their will? Patriarchal authority was on trial during those years, and it didn’t fare too well as lawyers Jahangir and Jilani used Articles 25 (right to equality) and Article 35 (protection of family) to defend women’s right to choose. Ultimately they won their cases, and the Supreme Court gave a final ruling in 2004 upholding this right. But, are we really still talking about this in the 21st century?

Believe it or not, activists were swimming against a turbulent tide of public and media indignation over the daughters who defied their parents, but thankfully we seemed to have moved on to other issues. Among them is the right of a woman giving birth not to die or be injured for life in the process. In 2015 Malkani filed a petition on behalf of activist Sheema Kermani’s theatre group Tehrik-e-Niswan, Dr Shershah Syed and Kiran Sohail in the Sindh High Court (SHC). She argued that women who suffer from debilitating obstetric fistula (a rupture caused by prolonged labour due to inadequate emergency health care services) have their rights to life and dignity violated and the Sindh government must properly implement its maternal and neonatal and child health programme to end this entirely avoidable and debilitating injury.

In February this year, the SHC recently ordered fistula repair centres to be established in four district hospitals in Sindh, and all reports suggest the government is responding promptly. Certainly justice delayed is somewhat better than denied altogether.

This is just part of the story about women’s strategic use of the courts. WAF member and lawyer Shahla Zia filed the most important environmental public litigation case in our history in 1992, against WAPDA for inflicting damage upon life and citizens, and won it in the Supreme Court two years later. Her achievement was to have the right to a clean environment recognized as part of our inviolable right to life, leading to the first Pakistan Environmental Protection Act in 1997.

The tone of our recent 2018 elections was altogether different from any previous one, for many reasons. One was because new laws had ruled out the possibility of banning women in communities from voting, a practice favored by the religious right and their friends in some parts of the country. This was the result of petitions filed as far back as 2001, when activists protested against the conduct of elections in district Swabi, and later again in 2015 against bans in Lower Dir. While the latter petition is still pending in the Supreme Court, the Election Commission of Pakistan got the point and helped politicians to ensure the 2017 electoral reforms contained a provision requiring at least ten percent of women in each constituency to caste their vote for the polling to be valid.

And the story doesn’t even end here, as I have yet to refer to the cases about other petitions regarding missing persons, arbitrary detentions, bonded labourers, non-Muslims’ right to divorce, and more. Until next time.

This blog is based on research conducted as part of our work with Action for Empowerment and Accountability, a programme supported by UK Aid and conducted in collaboration with the Institute of Development Studies at the University of Sussex.