By Muhammad Arshad
LAHORE/Multan: My inability to move, to go outside or even to washroom by myself drew pity from people around me, except my parents. Because of this attitude I was under the growing impression that I will never be able to live a normal life.
I used to struggle with thoughts that I will never get better and finally die with the unknown disease weakening my limbs especially muscles. With every passing day, I and my parents were getting further perturbed.
I was able to walk only on my toes but used to fall down due to weakness of muscles. It seemed I was caged in my own home. Going to school was quite tough and hectic for me while my only recreation was going out with my cousin on a bicycle once in a while.
For the treatment of my disease, my father took me to doctors, faith healers and hakeems from Karachi to Peshawar but to no avail. Only the doctors at a hospital run by Pakistan Army in Rawalpindi diagnosed my disease and that was 2001. I was suffering from Muscular Dystrophy (MD) for which there is no cure except for medications and therapy which can slow the course of the disease.
The journey of change
This is the story of Ali Hamza born in Chakwal in 1983. His family migrated to Lahore in 1996. With assisted movement but sheer determination, Ali was able to complete his matriculation (grade-10) in 2001.
However, it was only in 2005 when during a conversation with a friend Ali came to know about Milestone Society for the Special Persons and its Independent Living (IL) program in Lahore. The trainers at Milestone started counseling and training him and within weeks he was able to use a manual wheelchair all by himself. That was something he never did in the past because of his disability.
The IL concept changed his approach towards life. Above all, the feeling of moving independently helped him removing depression and the feeling of being a burden on others. “I had a different experience of one of the pillars of IL program—attendantship,” Ali said while explaining how that helped him maintaining hygiene. He said he was unable to take a bath independently or even comb his hair.
In the later weeks he became a part of the Milestone and started promoting the IL concept. Ali says he and his team have, so far, imparted training to over 18,000 individuals. The counseling and brainstorming of individuals have helped them live in the society independently with no depression or feeling of disability.
According to him, the attendantship was a great idea enabling even severely disabled persons to maintain their hygiene as in different forms of disability those suffering could not take a bath on regular basis. Also, there are issues related to unsafe usage of toilets which add to the problems of such persons.
Ali says in order to slow the course of his disease, he plans his daily activities keeping in view the amount of energy spent on the same. “My disability is progressive in nature and I have to calculate every move I make,” Ali said while adding in 2010 he was able to buy an electric wheelchair which proved yet another advantage. He holds a Master’s degree in Political Science and is an active disability rights activist and ardent advocate of IL concept.
More on IL concept
Almost similar is the story of Nadir Khan who lives in Multan some 350 km away from Lahore. Born in 1987, he was diagnosed with polio when he was an infant.
Nadir who got IL training at Milestones in the same year Ali did, and now heads the first IL center in Multan under his organization New Sahara Special Sports & Welfare Organization. His organization besides conducting IL training, provides attendant services to severely disabled persons and promote sports among the disabled persons.
Shafiq ur Rehman, President of the Milestone Society for the Special Persons who is himself a wheelchair user says his organization with the support of the Japan Council on Independent Living Centers (JIL) was the first one to introduce the IL program in Pakistan.
Mr Shafiq a 2001 alumnus of Duskin Leadership Training in Japan, said he was the first wheelchair user from Pakistan to get this training which opened up a totally new world. He said his organization had been involved in bringing disabled persons into the mainstream so that they play their role in the development of the country.
Milestone Society for the Special Persons has been receiving support from different countries including Japan and United States.
The organization provides services to persons with disabilities in general and to severe persons with disabilities in particular including peer counseling, advocacy for the rights based society and Attendant Service for persons with severe disabilities. The attendants visit home of persons with severe disabilities and help them manage their lives like toileting, shifting, taking shower and other daily based services following American and Japanese concept of Attendantship for severe persons with disabilities, says Shafiq. Beside that persons with disabilities are also provided with self management trainings that teach them how to manage life accepting their disability and live life with disability pride.
Shafiq, however, is not happy with the government’s efforts in this regard and says a lot has to be done from the government side. He said the government even did not record the population of disabled persons in the recent census properly.It is pertinent to mention here that Pakistan Bureau of Statistics has been facing criticism for not properly documenting disabled population of the country. In the latest (sixth) population census held in March last year, the Bureau recorded disabled population less than a million. The fifth census held in 1998 had recorded population of disabled people 3.28 million. Unlike India, with latest census in 2011, which counted disabled population as type of their disability, the provisional results of census in Pakistan are silent on the type or form of disability of the country’s disabled population.
He adds over the years the ongoing fight against terrorism and natural calamity such as October 2005 earthquake has rendered several thousand as disabled in Pakistan. Sadly, we don’t have reliable and accurate data about these individuals.
“Nonetheless, we are confident and playing our role,” Shafiq says while adding Milestone has so far set up the IL centers in Multan, Islamabad, Karachi and Hunza.
As there is no data available on Muscular Dystrophy patients in Pakistan, a group of doctors in Karachi have set up first of its kind the Muscular Dystrophy Registry of Pakistan (website).
One of the team members Dr. Sara Khan, Assistant Professor, Department of Neurosciences, the Aga Khan University Hospital, Karachi talking to DS on phone said the purpose of the registry, launched in February this year, was to collect data about people living with Muscular Dystrophy in Pakistan. “Patients, their physicians or family members can register themselves,” she added.
Dr Sara Khan who is also Diplomate Neuromuscular Medicine, American Board of Psychiatry and Neurology/Diplomate Neurology, American Board of Psychiatry and Neurology, while discussing the story of Ali Hamza said sending out a positive message was very important. “Since there is no cure available for muscular dystrophy, I have been counseling my patients that try to live as normal with the disease as possible.”