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Disability culture

April 15, 2018

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PERSONS with disabilities have been stigmatised since the beginning of time. The early Greeks and Romans left them to die as they were seen as a blemish on human perfection, while in the Middle Ages, they were thought to be possessed by the devil and sometimes kept in cages. Later, they were segregated in monasteries, poor houses, hospitals and asylums. This practice of confining them to residential institutions was followed in Europe and North America throughout the 19th and 20th centuries.

The medical model of disability emerged around the 18th century, defining disability as a biological deficiency rather than a punishment for sins. Scientists described those with disabilities as deformed human beings or imbeciles who needed to be cured often with brutal medical interventions.

In the next 200 years, social Darwinism, eugenics and social reform dominated the fate of persons with disabilities in Europe and North America. Separate colonies were built for high, moderate and low-grade ‘patients’ and epileptics, while girls’ cottages were constructed for women with disabilities. This system allowed for larger numbers of inmates in one place, who had not only to grow their own food, cook, launder and clean, but could also be further used as cheap labour on private farms or in small factories. Simultaneously, electric shocks, forced sterilisation and even euthanasia by the Nazis continued to be practised on them.

Pakistan lacks workable solutions when it comes to disability.

In the 1960s, the abysmal living conditions at these residential institutions and stories of malnutrition, abuse and torture of persons with disabilities were widely reported, leading parents’ groups to demand their closure. Alternative care services were introduced in some countries, but the structural causes of discrimination and social exclusion were not addressed.

The relentless struggle of parents and rights-based activists spanning five decades finally led to the adoption of the landmark UN Convention on the Rights of Persons with Disabilities in 2006 based on the social model of disability, mandating member states for the first time to provide inclusive facilities to persons with disabilities in education, housing, employment and recreation. This model views disability as a social construct with the onus on society and government to remove the physical and cultural barriers through changes in socioeconomic policies.

The three pillars of the UNCRPD are protection, promotion and inclusion of persons with disabilities. The Convention has “an explicit social dimension” with a rights-based approach to ensure equality of gender, education, accessibility and opportunity to all persons with disabilities. It calls for the enactment of appropriate legislation and abolition of rules, customs and practices that constitute discrimination. It stresses the use of information and communication technology, adaptation of curricula, modification of work environments, and elimination of all kinds of physical, social and cultural barriers through awareness programmes and cultural change.

Today, these barriers are being dismantled in Europe and North America: residential institutions are giving way to short- and medium-term respite alternatives to promote independent living. Sheltered workshops are being replaced by assisted work environments, and community participation is being fostered through weekly, monthly and seasonal camps for leisure, sports, music, crafts, sailing, hiking and other activities by governments, non-profit organisations, parents’ groups, etc.

In Pakistan, poor regulatory governance and non-implementation of laws coupled with the different levels of provincial development have led to rhetoric rather than workable solutions. There are 15 per cent persons with disabilities in the country who have no representation in parliament or in government departments concerned with disability and human rights. While provincial governments have passed several bills relating to disability after the 18th Amendment, these lack even the most basic understanding of UNCRPD principles.

In any case, legislation must be strengthened not only with structured enforcement mechanisms but also by instituting cultural change through education and awareness programmes. The governments, disabled persons’ organisations and civil society institutions must converge to develop holistic policies, and political parties in Pakistan should revise their manifestos to eliminate “direct discrimination, indirect discrimination and ‘unequal burdens’ imposed by socially constructed barriers”, as elucidated by Prof Mark Priestley of the University of Leeds.

Article 8 of the Convention mandates member states to raise awareness in society through public policy, legislation and media regarding persons with disabilities. With elections on the horizon, it is time to initiate a dialogue and inculcate a vibrant disability culture in Pakistan.

The writer is a former federal secretary.

Published in Dawn, April 15th, 2018