Disability is not a brave struggle or ‘courage in the face of adversity’. Disability is an art. It’s an ingenious way to live. — Neil Marcus “The deaf and dumb can’t get a driver’s licence. Get this form filled by an ENT [specialist]”. Farah, a 23-year-old girl with hearing loss was told this at the superintendent’s office the second time she applied for renewal of her driver’s licence. Farah is a foreign graduate, works for a local company, is well-versed in English and Urdu and has had a driver’s licence in other countries around the world. But it was her own dear homeland that refused to grant her one. It was not the requirement for a medical assessment – which can always be justified – it was the treatment that was uncalled-for, as if being different is synonymous to being a lesser human. Similar was Amir’s fate when he turned 18 and needed a CNIC; he was born deaf and communicates in sign language. His father had passed away when Amir was three years old, and his mother worked in a factory to make ends meet. After running from pillar to post, and greasing a few palms, he finally got his CNIC but with a disability logo. He was the citizen of Pakistan and the logo may have entitled him a few concessions but labelled him a lesser being for the rest of his life. These anecdotes are just a glimpse into the lives of people with disabilities. The obstacles they triumph over in their daily lives is beyond our imagination. The purpose of these two stories is not to criticise or oppose the policies of the government but lament the mindset that largely prevails, and the constant battles that people with disabilities struggle with. Their battles become multi-fold as they overcome their own challenges while facing discrimination due to the mindset of society. Such policies are a manifestation of the limited awareness that policymakers and breakers have of people with different abilities. While the world is developing acceptance and including more and more people with different cultures and abilities in the mainstream, we tend to avoid any such practice. The process of growth and development is sequential, continuous and cumulative, and any interruption in this process affects the developmental continuum. It is the disruption in the process of growth and development that we see as disease and disability, physically and mentally. What we are unable to grasp is the adaptations that have occurred during the process and the unanticipated evolution and growth that has taken place, which would not have been possible otherwise. Dr Oliver Sacks, a British neurologist, naturist and author, in his book ‘An anthropologist from Mars’, views this evolution as creative and it’s the other side of development or disease that he potentially sees in every individual. In the same book he mentions Lev Vygotsky, a Soviet psychologist and the founder of a theory of human cultural and bio-social development, who focuses on the ‘intactness’ rather than the deficits of such children. He says that “If a deaf or a blind child achieves the same level of development as a normal child then the child with a deficit achieves this in another way by other means and for the pedagogue, it is particularly important to know the uniqueness of the course along which he must lead that child. This uniqueness transforms the minus of handicap into the plus of compensation.” Dr Sacks writes seven amazing tales of adaptation and transformation in the same book. He decided not to observe these people in a hospital or clinical setting where they are ‘patients’ but in the real world, feeling like a ‘naturalist’, examining rare forms of life like an anthropologist, a neuro-anthropologist – but like a physician making house calls at the far borders of human experience. These paradoxical tales include the cases of ‘Mr I, The Colour-blind painter’, Dr Carl Bennett, a surgeon with Tourette Syndrome – a neurological disorder characterised by involuntary tics and vocalisations – Stephen, an art prodigy and Temple Grandin, American professor of animal science with Asperger’s Syndrome. These tales are not only stories of their own adaptations but also of people who facilitated them – their parents and in some case their teachers. They were aware of the uniqueness of the path that their children or students needed to follow if they were to develop as their neurotypical peers. They knew that knowing that unique path is the only way to transform the minus of handicap into the plus of compensation. We have the Stephens, Bennetts, Beethovens and Temple Grandins in our country too and they are the ones who were fortunate to have a parent or a teacher who took them on the path to compensation and a life as fulfilling as their peers. But what they do not have is an anthropologist who can see them beyond disabled patients. They don’t have a publisher, who instead of an unimportant breaking news, chooses to write about them, or a teacher like Ann Sullivan who had faith in Helen Keller and was willing to take the challenge, a media that instead of airing aimless morning shows, obnoxious political blame games and unending cooking shows decides to give a little bit of airtime to raising public awareness about people who – despite their effort – are being ignored and left unrecognised. The diagnosis of a disability is disturbing for parents but the fear would not be as intense if there were awareness at various levels and opportunities for rehabilitation and gainful occupation. World Disability Day paints a picture of pity and sympathy. Stories of suffering are shared; in sympathy one-time visits to restaurants, parks and zoos are arranged – only to be forgotten for the rest of the year. This day could have been celebrated – for the strength and the amazing ability to adapt that these people have built when faced with challenges and vicissitudes of life. It is a day to admire them for the art of survival that they have mastered. It is a day to appreciate the uniqueness of their path and their unrelenting desire to live, be happy and blend in. It is a day to salute their resilience. Having been constantly discriminated and labelled, they still welcome us with open arms in the hope that this might be an opportunity for integration, for being granted the same right as the ‘abled’ in the Islamic Republic of Pakistan. Let’s make it a day when everyone makes an effort to see the person in them, not just their dis-ability. The writer is CEO and speech therapist at The Circle: Caring for Children. Email: Sadafshah01@hotmail.com
