KARACHI: “In a country like Pakistan, where a normal person can't afford to be ill, living with a disability is not easy,” said wheelchair-bound Adnan Sarwar.
In his early 30s, he suffers from muscular dystrophy and hopes to carry on as long as his body allows him. “There will eventually come a time when I will need someone to lift my head but I hope I won't give up.”
Working at PTCL's account department, he also heads an NGO, Muscular Dystrophy Patients Welfare Association, with the aim to help people with a similar fate. “I am lucky that my brain is functioning. When my body started to lose control, I got worried and went to the doctors and that's when I found out that I had muscular dystrophy. Two of my elder siblings also suffer from this condition and every day is a struggle. I have seen families where four or five people in the house are suffering from it. It's not easy for the sufferer and nor is it any easy for the care givers and many have attempted to end their lives in extreme cases,” he said.
Talking about the lack of support and companionship, he said that he set up this NGO to provide information and links to other sufferers and hope as well, “I just wish there were more outlets for people with special needs”.
Sarwar was one of the disabled persons who had come together at a workshop, 'Needs of the Disability Community', held at local hotel on Thursday.
The Network of Organisations Working for People with Disabilities in Pakistan (NOWPDP), an initiative of the Aga Khan Council for Pakistan, hosted the workshop. Over 70 representatives of government, private and non-profit organisations came together to give an active input into what needs to be done to improve the quality of life of the disabled in Pakistan.
The event was aimed at getting together all the partners was the release of the Gallup survey, Lifestyle and future of people with disabilities in Pakistan: views from a public opinion survey, and the launch of NOWPDP's disability directory which is an online resource that allows users to get information on services available for people with special needs in Pakistan. The directory can be viewed at http://directory.nowpdp.org/. The event also had a panel discussion with the representatives of multinationals for the purpose of funding any projects aimed at the special population.
NOWPDP President Amin Hashwani said that when they began with this initiative in 2008, there was no coordination between the stakeholders but over the years this has changed. “NOWPDP is a platform that aims to bring together all the stakeholders and we hope to do better.”
Shamim Shaikh, deputy director of the social welfare department's provincial council for rehabilitation of disabled persons (PCRDP), said that there was severe ignorance about the facilities being offered by the department. “It's true that we have budgetary constraints and cannot advertise our services but people need to have some faith and come up to us. We offer free schooling for special children and as far as Karachi goes, our services are good. In the interior of Sindh, we do need to train our staff and sensitise them.”
“We need to have more coordination among various departments. Health, education, population and social welfare departments need to chalk out a joint strategy as these issues are all interrelated,” she said.
According to the 1998 census, approximately 2.49 per cent Pakistanis suffer from some type of disability. Though this is significantly lower than the World Health Organisation's estimate of 10 per cent, things are not easy for the disabled. Lack of awareness and resources are the major issues and threaten the well-being of the special population.
The Gallup survey took responses from 2,700 men and women from across the country. In response to the question, “In your household, how is the person with the disability looked after?”, 64 per cent people said “stay at home” while 19 per cent said they attended special schools. Six per cent stayed in some institution, eight per cent did nothing while three per cent gave no response.
In reply to another query, 50 per cent people said special instruments to assist people with disabilities were not available in the market, while 43 per cent said they were available.
When asked about the standard of education for people with disabilities in Pakistan, 33 per cent answered it was reasonable, 19 per cent said 'bad', 18 per cent thought 'very bad', 16 per cent 'didn't know', 11 per cent said 'good', while only three percent said it was 'very good'.
The nationwide survey, however, painted a dismal picture when it came to understanding the needs of the special population. It also highlighted how the services available for disabled persons were concentrated in urban centres. The number of vocational training facilities was too meager to meet the needs of disabled population with most services being concentrated in Karachi, Lahore and Islamabad, it stated. “The number of existing services and facilities for persons with disability (PWD) are absolutely insufficient. The availability of only 531 institutes for a population of 3.29 million is almost negligible. Resultantly, 70 per cent of Pakistan's population that lives in rural areas is deprived of such services,” it noted.
A 'peculiar' finding of the survey was that in most of the middle or higher income brackets, people with disabilities tend to stay at home.
While looking at the disabled participants, one thing was clear that support from family and friends goes a long way in helping these individuals carrying on with their lives. “You can't do much without the love and care of your family. There are cases where people with little financial backing have done well, because their parents made an effort and there are cases where there is money but there is no will and you will see people living in an air-conditioned room, hidden from the eyes of the people,” said a caregiver at the event.