Stephen Hawking is an incredible man. If ever there was a case of mind over matter, that is what he exemplifies. He’s world renowned; his achievements are amazing; he has gained numerous distinctions. It is but natural to think of all this first, rather than the progressive motor neuron disease, a kind of sclerosis, that has robbed his muscles of their strength and relegated him to a wheelchair, and deprived him of his voice: he communicates through a speech generating device.
Prof. Hawking has contributed to and popularised science: A Brief History of Time stayed on bestseller lists for a record-breaking 237 weeks. His life story is inspirational: he is a theoretical physicist, cosmologist and Honorary Fellow of the Royal Society of Arts, a lifetime member of the Pontifical Academy of Sciences and a recipient of the Presidential Medal of Freedom, the highest civilian award in the US. He has been Lucasian Professor of Mathematics at Cambridge from 1979 to 2009.
Would his story have been different if he had been born in Pakistan? In all probability, yes. Here the physically impaired are often confronted with incomprehensible stigma or pity, neither of which they want or need. All they desire is human empathy, and some consideration, as, for instance, ramps for wheelchairs, pavements suitable for those who use walking aids like sticks, or clear walkways for the visually impaired.
Children are the most vulnerable to stigmatisation by the public; parental and family attitudes go a long way to instil confidence in the physically challenged. Most important is to recognise them for what they are as human beings — not for their physical impairment. The Pakistani tendency is to either cosset them, or totally ignore them.
Shireen, who is hearing impaired, matriculated from a special school, a major plus for her. But her family was over-protective, and she received more favourable treatment than her siblings. The end result was that she grew up spoilt, yet lacking in self-confidence. Later the family migrated to the US, and a new world opened up for Shireen. She learnt to move around, shop, use public transport independently; learnt to use the computer, train as a florist, and even learn driving. Today she’s a busy young married woman, able to independently manage her own life.
Given the extent of physical impairment in the country, it is necessary for everyone to view the matter in a common-sense, realistic way. According to Nadra, there are 639,096 physically impaired people in Pakistan, including 225,000 women, 134,000 children, and 85,254 visually impaired. This data is not complete: researchers are concerned that even at the time of census, disability data remains heavily marred, with under-reporting of disabilities at early ages.
The causes of physical impairment are numerous, ranging from congenital birth defects to those that arise after birth, as with polio or multiple sclerosis, accidents, and now, bomb blasts and terrorist activities that cause horrific injuries. Dietary deficiencies during pregnancy lead to abnormalities in the developing foetus. Measles infection in the mother may result in deafness for the baby. Even skin care products may be at fault: they may contain toxins that are absorbed through the bloodstream, damaging the growing foetus.
Disabilities/impairment may be physical, cognitive, mental, sensory, emotional, or a combination of any of these, but that does not preclude the possibility of people with infirmities integration into ‘normal’ society. The British, for example, have a civil rights law, The Disability Discrimination Act 1955, whereby it is permissible for employees to have reasonable medical criteria for employment, and to expect adequate adjustment to be made. The act places obligations on employers/service providers, so that it is unlawful to treat the disabled less favourably for reasons related to their disability.
Unfortunately, in Pakistan, the situation for the physically and mentally challenged is bleak. There is virtually nothing available for them at state level: this neglect is also apparent in public attitudes of neglect and pity towards those who are in any way impaired. The level of stigma is such that in one instance the physically impaired were not allowed to pray alongside the able-bodied in a prayer congregation.
An older woman, a busy career woman throughout her adult life, was surprised at society’s behaviour after she suffered a bad fall and a fracture. Though she regained her mobility, she had to walk with a stick; the pitiful glances and attitudinal changes that she encountered came as a shock. “It was as if I had lost my brains in the fall”, she said.
Shamim Kazmi, who has been working with the physically challenged for 30 years, is deeply concerned at Pakistan’s unchanging society. “The same attitudes continue. We have no system to help the physically impaired. There are many NGOs working in this sector, but they cannot fill the need for a comprehensive state response, nor is there any law that I know of, to favour those who are in any way disabled.”
Attitudes towards physically disabled girls are especially disappointing, and there are more handicapped females than males. In this male-dominated society, physically impaired girls are even more neglected than their counterparts. The situation is worse in rural areas, where the impairment is made worse by ignorance, neglect, absence of healthcare; at puberty, girls are in a worse predicament.
One mother of a physically challenged girl actually prays that her daughter die before her. “If I were to die first who will care for her after I have gone. No one will be there for her.”
There is no answer to these problems except large-scale intervention at state level to formulate a wide-reaching strategy for the disabled which must include focus on their rights.
It is essential to evolve a public health strategy to address the issues of physical and mental impairment. Since prevention is always preferable in healthcare, it is important to include here information about nutrition, healthcare and genetic counseling at pre-marital age.
Even more necessary is to bring about change in public attitudes — physical impairment can happen to anyone. Greater empathy by ordinary folks can change the entire society for the better.