When Seema* delivered her child, the whole labour room fell silent. There was no sound of a baby crying, no attendants busying themselves with preparations. She looked around appealingly and all she could see were expressions of fear and anxiety on the faces of the doctors and staff. Finally, they brought the baby to her and Seema, in that instant, could not believe that this was something that had come from her body.

Far from what she had expected, the child had been born deformed and disfigured. There were two lumps on her skull, almost like tiny heads, and her eyes were so far apart that they almost touched her ears. Instead of a nose, she had two slits that passed for nostrils. She was, as the hospital staff themselves said, a “monster”.

Unable to accept this child, Seema passed her over to the nuns and sisters of Dar-ul-Sukun when she was just a day old.

Persons with disabilities don’t need pity or charity, argues Fakiha Rasheed, they need the tools with which to build their own lives

When the baby survived a few months, the sisters took her to the best brain-surgeon of the city only to hear him say: “Don’t waste your energies on her, she will not survive”. But survive she did and five hard years later, doctors from Holland who examined her though it might be possible to remove the lumps from her head. However, since these lumps contained brain matter the doctors were not sure if she would survive the procedure. The sisters at Dar-ul-Sukun were unwilling to take that risk.

The girl survived another year and then a team of doctors from Australia took on the challenge. The 19 hours-long surgery went well, the lumps were removed without damaging her brain. The next step was to form her nose so that she could wear spectacles. A bone from her rib was taken to do this restructuring, which was also a success. The next step was to develop and reconstruct her skull, something that finally took place a few years later. This ‘monster’ is now a princess who completed her matriculation, became a teacher, has more than four hundred friends on her Facebook page and is living a happy and productive life. She is Cookie Lewis — A miracle child. This 25 year old girl, labeled as disabled since her birth, is now full of life and gratitude, always showering love and kindness on all around her.

Cookie hosting a Valentine’s day show

It may seem that it is a rare and unique story, but the fact of the matter is that this world is full of stories like Cookie’s. According to the World Health Organisation, 15 per cent of the world population, nearing the count of one billion, is suffering from some kind of disability, hence making Persons with Disabilities (PWD’s) the largest minority of the world without the bias of caste, creed and religion. Here in Pakistan, though there has been no census since 1988, a British Council report estimates that there could be as many as 27 million disabled persons in Pakistan.

It may seem to be a rare and unique story, but the fact of the matter is that this world is full of stories like Cookie’s.

The challenges faced by PWD’s are manifold; they are often stigmatised by their own families and friends and have to bear the insults and disdain of those who believe that disability is a curse from God. Then there are those who look upon them as financial and emotional burdens for their own families. Even when they are dealt with kindly and cared for, they are more often than not treated as if they are incapable of expressing themselves and following their dreams.

Cookie hosting Inter-Karachi Sports festival

Today the world celebrates a day for the rights of persons with disabilities, whether genetic or acquired, physical or neurological. It was on Dec 3, 2006 when the United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities, referred to as UNCRPD. The aim was to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

Pakistan is a signatory of this convention and ratified it on July 5, 2011, as 101st country. The celebration theme this year is “Sustainable Development” aimed at harnessing the promise of technology; with an aim to make the latest technology available and accessible for PWDs. One really wonders how, in a country which ranks very low on human rights issues in general and perfectly able people feel insecure, exploited and abused, can we think of improving the lot of those with disabilities?

Cookie Lewis as a child

Although Pakistan has ratified the UNCRPD, little has happened by way of legislation, policies and strategies in line with the UN convention.

The Disabled Persons Ordinance DPO — 1981, though a landmark in the legislative struggle for PWDs, was aimed at providing employment through quotas and rehabilitation by providing education in special schools. It was fundamentally a health and welfare-oriented concept, based on sympathy rather than empathy for PWDs. Unfortunately the monitoring and implementation of this law, like many other civil laws of rights has been weak at best.

The Federal and, after the 18th amendment, the Provincial governments need to develop fool proof laws to protect the rights of PWDs regarding discrimination, inclusive education, employment, communication, universal design infrastructure, transport and civil rights. As this alone would not suffice, the relevant Assemblies would need to legislate and form Authorities to develop and monitor the implementation of such law and policies. This can be done with proper strategy and regular monitoring.

Inaccessibility of buildings, public places and means of transportation, information through media, unjustified negative stereotyping and discrimination against PWDs could be diminished by positive interventions in removing the barriers in the realisation of their basic right to a meaningful life. And all this is possible; the previously wheelchair inaccessible building of the Supreme Court became accessible and disabled-friendly within a week after an order of the SC at the occasion of the submission of the said petition. Dolmen Mall — Clifton Karachi is exemplary as an accessible public place structure for PWD’s and also employs deaf mutes as parking attendants.

A ray of hope has appeared on the horizon of legal efforts in the form of Community Based Inclusive Development — CBID Network Pakistan, a network of more than thirty Disabled Person’s Organisations, International NGOs and National and International Donor agencies, which is working for the enforcement and protection of the Rights of PWDs in Pakistan. It has not only developed a comprehensive legal draft for a Pakistan Disability Act, but has also filed a legal petition in the Supreme Court of Pakistan against the relevant state functionaries, seeking enforcement of the fundamental rights of citizens embodied in the constitution of Pakistan and the full implementation of the Disabled Persons Ordinance, 1981.

As a concerned citizen and a person involved with the service and healthcare of PWDs, I often wonder how many more years would still be required to change the mindset of all stakeholders, including governments, civil society, immediate and extended families of PWDs and the PWDs themselves? How long will it take to move from the conventional thinking of charity, sympathy and medical based models to social and rights-based approaches? What will make this young nation realise that disability is not a taboo? When will we break the endless cycle of denial — charity — welfare — exclusion?

I hope that the state and civil society will rise up to the occasion and not only raise awareness about the status of PWDs and strive for their right to a full life, but will also they will take steps and make decisions with ensured implementations to bring the meaningful change in the lives, status and perceptions of this most deprived segment of our society. Otherwise one fears that Cookie Lewis’s of our country or for that matter people with much lesser disabilities like blinds, dumb and deaf, all will be excluded and the society at large and the civil society would miss the richness of diversity, tolerance, love and human fraternity. May Allah give us the courage to be fair and just to our fellow human beings; the PWDs.

The writer is a consultant with Dar ul Sukun

Published in Dawn, Sunday Magazine, December 7th, 2014