For me the world consists of two kinds of people, the able and the disabled. My son, born with Cerebral Palsy 39 years ago, propelled me into the world of the special persons. In the disabled world, there are again two kinds of people: the service providers and the service takers.
When I needed services for my son, I realized the paucity of available help. From prevention to cure to rehabilitation, in all of these areas there was a lack of professional help. So my journey of struggle, hope, despair and acceptance started and, 39 years later, I have learnt a lot.
The Pakistani nation is one of the most charitable ones in the world. If it were not for the individuals and organisations who are continuously striving to make life easier for the underprivileged, it would have been a hopeless situation. Whether it is monetary help or otherwise, our people are reaching out to those in need, especially in health and education. However, this is not enough. Unless and until the government and state take responsibility, it will never be enough.
There is a wide spectrum of disability types. No effort has been made to recognise and address the different needs of the special persons. It is necessary to take a holistic view of their needs. Disability is an umbrella term which encompasses a variety of problems, from mentally challenged to physically challenged and all in between.
For the most part, the government is concerned with extending help to only those who may be wheelchair-bound but are capable of holding some jobs. That gives the government an opportunity to boast about how they helped the disabled by giving them more ‘job quotas’. They ignore the ones that are lying on the floor and are not capable of voicing their needs.
Cerebral Palsy (CP) is the most common and the most ignored condition in Pakistan. Globally, too, it is the largest handicap group among children. The reasons for this are firstly, the inadequate maternal healthcare; secondly, the lack of skill in recognising the condition; lastly, if it is diagnosed at all, it is dismissed because there is no cure and there is no danger of it being infectious. International organisations recognise polio as something to be eradicated so that it doesn’t spread, but CP in the underdeveloped countries is not seen as a cause for concern.
Years ago, the developed countries were no better. By means of education, however, they developed in all areas and have been making steady progress ever since. After World War II, Europe strived for welfare states which gave the United Kingdom the NHS (National Health Service). Some of the conditions which are still very common here in Pakistan have been reduced to a great extent in developed countries, so now there are very few cases of athetoid CP there, which is often caused by untreated neonatal jaundice. On a visit to Pakistan, a therapist from Ireland remarked that she had not seen so many athetoids in her whole life as she had seen in that one week.
Ideally, all citizens should have equal rights where the state is concerned. If you cut the ribbon, hand out wheelchairs, have the photo sessions, you have not changed the life of a disabled child or adult. As science and technology progressed in the West, the states there had to make life easier for the disabled. As a result, all places there are wheelchair-friendly.
Every road, building and shop has to comply with the existing disability laws. One can travel anywhere with a wheelchair including by buses and taxis. There are ramps to every building, and special toilets everywhere. There is a very thought-provoking story of the UK in the 1960s. Physically challenged people chained themselves to buses and declared that if the buses could not take them, they were going nowhere. The result is that the bus let down a ramp near the curb for the wheelchair passengers to get on with ease. This shows that pressure from the public is the only effective way to make reforms.
I am grateful to Allah that I was lucky that when my son was born with CP, he opened several doors for me. I could give him the best, which is to get him to his own potential. That is what rehabilitation is. There is no cure for CP, but if a CP child gets no intervention it will be more difficult for the family to care for him or her and it’s not a progressive disease from which you die. So the CP child becomes a CP adult with various subsequent resulting problems.
In 2005, my Irish friend, who is a qualified paediatric physiotherapist, and I opened Akbar Kare Institute (AKI) in Peshawar. After visits to special facilities in Peshawar, Lahore and Karachi, we discovered that physiotherapy and approach to CP was the weakest point. In other words, they were good for giving the family a respite for a few hours. But evidence-based therapy was nowhere to be seen. Usually, each child is given the same treatment, irrespective of their particular problem.
The reason for this is that the scope of education for a physiotherapy degree is mostly theoretical with very little clinical practice required, and pediatrics is almost ignored. It mainly concerns itself with adults with stroke, muscular skeletal problems, sports injuries etc. This is not to undermine this good work being done, but unfortunately it is very rare in Pediatrics
AKI started training fully qualified physios in paediatric CP. In the early days they were shocked and surprised to find that they had to get down on a mat to assess and treat a child. This was not the usual sitting in the chair physio. The biggest hurdle to our work is that people and the government don’t want to change the status quo. We just have to copy the good practices and scientific advancements of developed countries and other enlightened developing countries, e.g., Malaysia, Nepal and India, instead of trying to reinvent the wheel. Nowadays, one can access any information at the click of one’s finger. We only need the will to do it.
AKI is completely a free clinic (including all treatment and appliances) where we are copying the best practices available abroad. This includes working with parents, trying to solve their problems, chalking out therapy plans, and continuous assessments of children. We have also kept complete data and records of each child who comes to our door. In Pakistan, most clinics depend on expensive machinery from abroad (of course this is a money-making way). That is why treatment cannot be provided to all sections of society. We rely on copying and producing appliances, made by our carpenter at the clinic. In this way, each appliance – for example a wheelchair or a standing-frame – are made to cater to each child’s needs, so little children do not rattle in adult wheelchairs without the correct and appropriate support. Electric therapy is widely and indiscriminately used in physiotherapy but in most children’s cases it is totally unnecessary.
We have carried out CP awareness presentations in three tertiary hospitals in Peshawar to emphasize the importance of diagnosis and rehabilitation. Ideally, a CP child will need rehab in various areas; for example, a child may have associated problems with vision, hearing and learning disabilities. This requires the expertise of different fields of therapists, such as occupational, speech and special education. Our physios have done a special workshop .ng techniques. There is a myriad of problems associated with CP. Sometimes, giving away wheelchairs does not work because of the rough terrain in villages, absence of sidewalks and ramps in cities etc. If a child who doesn’t have CP comes in, we assess them and direct them to the appropriate facilities, where available.
AKI has changed three residential houses in University Town, Peshawar. From time to time, we are told to close because the area we are in is a residential one even though AKI is definitely not a business enterprise. We want to abide by all the laws but we have been given no alternative to alleviate our problems. Every now and then, we have been promised help but there has been no action taken so far. Anyone is welcome to come and see for themselves what we do and the families we help. But I can say with certainty that AKI is the only physiotherapy clinic of its kind in the whole of Pakistan.
There is no place for our kids in the special education centre as their prerequisite is that the child should be able to sit and be continent whereas those who need assistance and are wearing nappies also have the right to education.
Our aim at AKI was always to raise awareness and demonstrate how best practice can be done in a sustainable and indigenous way. The ethos of AKI is to bring the latest evidence based therapy; we work with the families involving them in the care of their child. We help them manage the daily problems they face by listening and learning how we can best help them. We cannot stand still and think we are good enough, we must do better. These forgotten families deserve better.
(The writer is Founder of Akbar Kare Institute, Peshawar and can be accessed via e-mail: [email protected])
Copyright Business Recorder, 2021
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