When attitude matters

Disability. The word conjures up myriad images and emotions — pity, fear, avoidance, revulsion —‘there but for the grace of God go I’. To be disabled is to be considered ‘incomplete’, lacking in something and, therefore, a condition that is stigmatised and devalued across cultures and through history. Children with physical disabilities were exposed to the elements and left to die in ancient Greece and considered unfit to live by the Nazis. In many parts of the world they are still subject to fatal neglect, and if they survive, viewed as burdens or ‘curses’ on their families. Women and girls with disability face a ‘double jeopardy’. The pervasive exclusion and marginalisation from the ordinary life of society is frequently internalised by persons with disability who then start viewing themselves as inferior, inadequate or unfortunate. 

Seldom does one pause to reflect that there is a ‘person’ beneath the condition; thinking, feeling, responsive person with the same desires, hopes, aspirations and fears as any so called ‘able’ one. The term ‘able’ is itself a misnomer as most of us are likely to experience disability at some stage of our life or the other; thus we are all only ‘temporarily able-bodied’. 

Disability is liable to affect anyone at any time, with scant respect for age, gender, class, caste or ethnicity. While poorer parts of the world where primary health care, proper nutrition, sanitation and clean drinking water are lacking have children and adults at a higher risk of becoming disabled, the developed world with its systems of health care and public welfare and increased life expectancy experiences a number of age-related disabling conditions. It is estimated that by the year 2015 about 800 million people worldwide are likely to experience disabling conditions.

In India, 26.8 million individuals with disability have been counted by the Census of India (2011). As the figure is based upon just a few ‘officially recognised’ disability categories, it is considered a gross underestimation and fails to capture the actual reality on the ground due to faulty enumerative practices and social stigma. Using broader parameters, the World Health Organization has estimated that approximately 70 million persons in India are likely to be disabled.

Disability includes different kinds of bodily variations — physical, sensory, intellectual and learning impairments — which may be either present from birth or acquired during the life-course. Disabilities may be temporary or permanent, static or progressive in nature. Adopting a ‘one size fits all’ approach and lumping all persons with disabilities together is problematic. For instance, ‘inclusive education’ has become a popular and ‘progressive’ buzzword, with little attention paid to the different needs and accommodations that must be made for children with conditions ranging from visual impairment to autism. Similarly, the long-term needs of persons with different kinds of disabilities may vary dramatically; while some may move towards autonomy and independence others may require lifetime support and care.

However, it is undeniable that persons with disability share the common experience of stigma and exclusion from the daily activities and experiences that the ‘rest’ of us take for granted. These barriers to social participation range from architechtural to social and attitudinal ones. Public spaces, transport systems schools, hospitals, government offices, malls, public toilets send a loud, clear message to persons with disability: “Stay at home”! Curious and sometimes hostile stares, insensitive remarks, speaking about people as if they do not exist, asking an attendant or companion questions about the disabled person even if it is perfectly obvious that the person concerned can speak for themselves, all reflect a perception that they are not persons in their own right, but objects of pity, derision or ridicule.  Activists assert that disability is not just the product of bodily impairments but rather oppressive and discriminatory social practices and attitudes. This idea has been at the heart of disability rights movements across the world, including in India; persons with disability demand that their voices be heard and taken into account in formulating policy.

As we observe World Disability Day on December 3, it is time that we as a society reflect upon how we view disability. We can start with language. There is no need to be politically correct; terms like ‘specially abled’, ’differently abled’ do not capture the oppression and discrimination faced by people with disability and are considered patronising and paternalistic. However, certain terms like ‘cripple’, ‘victim of’, ‘suffering from’ are best avoided. ‘The blind’, ’the deaf’, ‘the disabled’ are terms that suggest that we are talking about labels, not about real people. Speaking of a wheelchair user as ‘wheelchair bound’ completely misses the point that the wheelchair is a means of mobility and freedom to its user! 

Persons with disability do not need pity. Viewing disability as the product of ‘karma’ or past misdeeds reinforces the notion that it is a ‘fate worse than death’ or a great tragedy for the person and the family. Our mythology and folklore abounds with characters whose bodily ‘defects’ are viewed as punishments for misdeeds or as markers of ‘flawed’ character; the lame Shakuni, hunch-backed Manthara, blind Dhritarashtra for instance. Popular cinema, too, by and large reinforces the notion that disability is tragedy. This does a grave injustice to persons with disability who merely want to lead their lives as best as they can and be given the opportunities and chances that are their due.

Disability, like caste and gender, is an axis of social oppression and must be reconceptualised as such. It is not a ‘soft’ issue best left to NGOs and charities but an issue of development and human rights which demands the pro-active intervention of society and state. Recognising the inalienable right of persons with disabilities to participate in every domain of society from work and leisure, political participation, sexuality and family life demands a shift from a discourse of ‘pity’ to one of empathy, empowerment and rights. 

The author is the parent of a teenager with disability