Unity, faith, discipline and inclusion

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    “The reason disability is held responsible is that label – the word ‘disability’ – is a negative term. One that ought, ideally, be replaced. It is why the term ‘differently abled’ is often used instead, since people with disabilities possess abilities just like anyone else, although in some cases they may manifest differently.”

     

     

    I narrowly missed running over a person moving below my line of vision, when reversing the car from a parking spot. The man who survived despite my efforts to the contrary, sat on a small wooden cart with wheels, raised about three inches off the road. His thin, unusable legs were folded under him as, hands on the road, he pushed his cart from car to car, asking for money.

    This man’s life was not this way because of his disability. It was this way because of poverty. The reason disability is held responsible is that label – the word ‘disability’ – is a negative term. One that ought, ideally, be replaced. It is why the term ‘differently abled’ is often used instead, since people with disabilities possess abilities just like anyone else, although in some cases they may manifest differently. And people with ‘disabilities’ can and very often do lead full lives. Stephen Hawking, Helen Keller, F.D Roosevelt, Stevie Wonder, Frida Kahlo come to mind as examples, and from Pakistan, Muniba Mazari, Saima Ammar, Sarmad Tariq, and many others.

    When a person with a disability is burdened with severe poverty is when the disability becomes even more challenging than it already is.

    The world needs the contribution of all its people, all the talents and abilities that every individual, disabled or not, can contribute. As Stevie Wonder said, ‘Just because a man lacks the use of his eyes does not mean he lacks vision.” People with disability, rich or poor, should be able to lead a full life if governments take their responsibilities seriously. The government in Pakistan, unfortunately, treats its responsibilities like a manhole: it moves around them leaving that gaping hole for others to deal with as best they can.

    So, what does Pakistan have to offer persons with physical disability?

     

     

     

    Mercifully for the people of this country, its private individuals have shouldered the burden. They have set up organisations that help their disabled compatriots lead easier lives, organisations that provide equipment and training so that people who need them can make a living.

    This article deals more specifically persons with spinal cord injury, which is one of the most common cause of disability.

    Pakistan had no specialist medical centre to deal with spinal injury until 2014. That is when the Orthopaedic and Spine Unit was inaugurated at the Lahore Medical and Dental College / Ghurki Trust Teaching Hospital in Lahore. Although it is hardly sufficient for the number of patients throughout the country, it is a wonderful start.

    More medical facilities, and more equipment to deal with spinal injury such as wheelchairs, lifts, and ramps are crucial. Yet, the first message delivered most consistently by patients with spinal injury, by those caring for them, and by the doctors working with them was not about lifts and ramps. The first thing they all said was: If you suspect someone has hurt their spine, please do not move them.

    Second only to the accident itself, the fact that they were moved after their injury often causes the most damage to persons with spinal injury. “Maybe if I had not been moved, the extent of my disability would have been less,” was the common musing of every one of the people I spoke to.

     

     

    Sana

     

     

    Sana was a first-year medical student when, in 2003, the car she was travelling in from Lahore crashed on the Motorway on the way to Islamabad. Sana’s older sister died in that accident, and Sana was left with a broken neck at C5, C6.  She was moved from the car and taken to hospital.

    Sana had surgery, but was left with no sensation below her neck, although she can move her shoulders and her arms to a small extent. With that minimal movement she uses a computer. But that story comes later.

     

    Aqsa

    When Aqsa was still doing her Masters in 2016, she and her brother were taking out mattresses from a store on the roof.  Aqsa opened a flap that led into the room below so they could throw the mattresses into the room. But then, forgetting the flap was open, she stepped onto the opening herself. She fell through to the floor, breaking her thoracic spine in the fall. The fracture at T12, means she can use her arms, but not her legs.

    Aqsa was taken to Shalimar hospital. It was doctors there who recommended she be taken to Ghurki hospital, to the spinal care unit.

    “I had no idea what had happened to me,” Aqsa said. “I had never heard of such an injury as mine. I thought I would be operated upon and be fine in a short while. I didn’t know that I would not walk again,” she said, tears in her eyes.

    Aqsa’s mother brings her to Ghurki hospital for physiotherapy every few months, otherwise she does the recommended exercises at home. She has been fitted with braces that give her limited mobility. The physiotherapists taught her to turn over in bed, and to sit. They taught her and those who care for her the best way for her to move around, from her bed to a chair and vice versa, and how to use the bathroom.

     

    “’I had no idea what had happened to me,” Aqsa said. “I had never heard of such an injury as mine. I thought I would be operated upon and be fine in a short while. I didn’t know that I would not walk again,’ she said, tears in her eyes.”

     

     

    Aqsa now wants to carry on with her studies. Her mother wants Aqsa to become a lecturer.

    “But I cannot carry on with my studies,” Aqsa said, “because in the universities in Lahore, although there are lifts in some of the other departments, there are none in mine. And the classes are held on the upper floor.”

    “We asked them to move her class down,” said her mother, “but they said there was no space on the ground floor.”

    “I heard there are lifts in my department in a university in Islamabad, but it is not possible to move the entire family there,” said Aqsa. “It is the same in the shops and other places, there are no ramps for wheelchairs.”

    I asked her about social attitudes to her injury, and Aqsa said that the hardest thing is when people wonder, even within her hearing, what sins she must have committed to deserve such an injury.

     

    Tahir

    Tahir injured himself in 2015, in almost exactly the same way as Aqsa. He blacked out when he fell and injured his spine at L1. It means he has the use of his arms, but has lost movement in his legs.

    He was taken to the General Hospital, to Shalimar Hospital, and then to Surgimed.

    “So it was five days after I fell, that my spine was operated upon by Dr. Amer Aziz at Surgimed,” he said. “At Surgimed they recommended I come to the spine unit at Ghurki for further treatment.”

    The main suggestion here seems to be:  If you suspect a spinal injury, take the injured person straight away to the Orthopaedic and Spine Centre, run by the Ghurki Trust Teaching Hospital, located at the premises of the Lahore Medical and Dental College.

     

     

     

     

    In the case of some injuries such as to the spine, time is of the essence, and there is a window within which certain procedures must be performed if they are to have a chance of success. These procedures are performed at this hospital.

    In Tahir’s case, following surgery and physiotherapy he regained feeling in his legs, feeling he had lost because of the injury. His feet are still numb however, and he is still not mobile. He lives in a modest home, where space is limited. The bathroom is small and does not accommodate a wheelchair. His joint family is very supportive. After the accident Tahir’s younger brother left his job in Saudi Arabia and returned home to become his brother’s main support and caregiver. Tahir stresses that his neighbours are very helpful, but his experiences elsewhere have not always been as good. He remembers the time when he was hooted at at a wedding, and some of the guests shouted: “Why was it necessary for him to attend?”

    Not surprisingly, one of Tahir’s messages is that people should be supportive of people with disabilities, and not allow them to become depressed.

    Paradoxically, supportive and invaluable as family members are, they can be a hurdle to independence if they try to protect their disabled relative too much.

     

    Tony

     

     

    Tony was employed by the Rangers, when in 1986 he broke his neck at C5, C6 in a swimming accident. He was twenty- two years old. It was the first in a series of accidents to befall the young man at that time. The second was when, being paralysed, he did not realise he was resting against a scaldingly hot part of the back of a truck that carried him to hospital, and his skin was burnt right off his body.  The third was when his ambulance overturned on the way to Lahore, and what little feeling he had in his legs disappeared.

     

    “The Rehabilitation nurse Ruth literally bullied Tony into independence. The first thing she did was insist on Tony’s mother returning to Pakistan, because she was too protective of her son. Tony’s mother complied. When she returned three months later, Tony was more independent than he would have been with his sympathetic and supportive family by his side.”

     

     

    Tony’s family was very supportive, although they were not affluent. But he had been a government employee, so he received a government grant for treatment abroad, and assistance from Agha Hasan Abidi, of the BCCI. With these funds, his mother took him to England where the doctors operated upon him without a fee. Dr. Amer Aziz, who now heads the Orthopaedic Department at Ghurki helped and visited him regularly.

    At the Spinal Injuries and Rehabilitation Centre in Aylesbury, the Rehabilitation nurse Ruth literally bullied Tony into independence. The first thing she did was insist on Tony’s mother returning to Pakistan, because she was too protective of her son. Tony’s mother complied. When she returned three months later, Tony was more independent than he would have been with his sympathetic and supportive family by his side. Obviously, although sympathy and support are indispensable, it is also important to be forced to be independent, and neither can replace the other.

    It took a while, but eventually Tony progressed. He married. His wife is extremely supportive, and a nurse. They have two children, conceived by means of IVF. Tony bought video stores which did well. Today Tony is financially independent, lives in his own home in England, and drives a specially adapted car – rather fast – all while being quadriplegic, which means he has no movement below his neck.

     

    Let’s return to Sana, introduced at the beginning of in this article. All the persons I spoke to for this piece were extremely likeable, attractive persons, with a strongly visible vein of courage, and their families have been extremely supportive, and Sana is no exception. In Sana’s case however, her parents have the means to help her deal with her disability.

     

     

     

    Sana was taken abroad for treatment and rehabilitation, in addition to treatment in Pakistan. In England she met Tony who helped her in every way he could.

    The same nurse who helped with Tony’s rehabilitation was also involved in Sana’s care. In Sana’s case too, she insisted that her family allow Sana to help herself. Hard as it may seem, being forced to do something is the best way to learn. Sana uses the computer now, which she could not do before, and drives her own wheelchair. She is less mobile in Pakistan because of uneven roads, and the absence of ramps, but when she visits England she is extremely independent. She is a charming, confident, intelligent young woman, well aware of current events and with a wisdom beyond her years.

    Sana has gone on to study law – and holds a a post-graduate diploma in Human Rights, as well as an LLM in Dispute Resolution, all via the University of London’s International Programme, which means she was able to study long distance, from home. She is also an ambassador for the Ghurki Spine care centre, she has written articles about disability, and she is a vocal advocate for facilities for the disabled. When she pointed out the need for ramps on social media recently, some restaurants were known to comply and provide special access. She has also asked the Lahore Development Authority (LDA) and the Defence Housing Authority (DHA) for facilities such as ramps, and has been assured by them, when she visited them personally, that they will implement her demands.  

    It is hoped that Sana will also turn her attention to other places, such as schools and universities.

    That there are no ramps in public spaces is hardly surprising, given that the only discoverable mention of disabled persons in the LDA by-laws was:

    6.2.3 Ramp & Toilet for Disabled Persons In all buildings other than residential buildings, a ramp of minimum 4 feet width and having maximum gradient of 1:6 should be provided for disabled persons. In case of non-provisions of lifts in Multi-Storey Buildings each floor should be accessible through this ramp. A toilet for disabled must also be provided. Whereas no ramp is required on buildings on plot size less than 7 Marla

    That half-hearted recommendation ‘should be provided’ indicates the low priority such facilities have, confirmed by the fact that a ramp is almost never available in Pakistan.

     

    “The best medical care in Pakistan is provided not by the government but by private individuals and trusts. The Ghurki Orthopaedic and Spine centre, a unit of a private family Trust, is no exception. As at Shaukat Khanum Cancer Hospital, patients at this Unit are treated according to their means, the poor entirely free of charge. The money is raised by means of donations such as zakat, and fund raising programmes in Pakistan and overseas.”

     

     

    If you follow the canal from the Mall Road in Lahore towards Jallo park, you eventually come to a bridge of uncertain quality spanning the BRB canal. Another bridge being constructed next to it is due to the efforts of Ghurki hospital.

    The bridge leads to a rutted road (also in the process of being fixed), and when it curves to the left you will find the Ghurki Trust Teaching Hospital on the right.

    The Orthopaedic and Spine Unit is here, a sprawling building behind the main hospital, with extensions still under construction, and ample parking space. It is headed by the well-known Orthopaedic and Spinal Surgeon, Dr. Amer Aziz. Inside it is wonder of wonders, very clean, a rarity in Pakistan.

    This write up has focused on spinal injury, but there are other kinds of orthopaedic disabilities which include congenital disabilities, and those caused by disease. Those are also treated here.  The unit contains wards, imaging rooms, clinics, pharmacies, lecture theatres for students that are hooked up to view surgery taking place in real time, conference rooms, and on-site facilities where instruments are sterilized, packed and distributed to the entire hospital.

    Patients are operated in ten state-of-the-art operation theatres equipped with impressive imaging technology. Up to 8,500 operations have been performed here annually, including trauma surgery, arthroplasty, pediatric surgery, arthroscopies and surgery of the spine.

    Every patient in the wards, and one attendant with each patient, is provided with two delicious free meals every day, courtesy Gourmet, the bakers and caterers.

    The Orthopaedic and Spinal Unit is an approved AOSpine Training centre, and Dr. Aziz has been appointed AOSpine ambassador by the foundation. AOSpine is a professional, medical not-for-profit foundation based in Switzerland, generating, distributing and exchanging spine-care knowledge to improve the lives of patients.

    The team at the unit at Ghurki includes ten consultants, five senior registrars and forty residents from all over the country, as well as a certain number of residents from other countries. The surgeons operate upon forty to fifty patients every day.

    The best medical care in Pakistan is provided not by the government but by private individuals and trusts. The Ghurki Orthopaedic and Spine centre, a unit of a private family Trust, is no exception. As at Shaukat Khanum Cancer Hospital, patients at this Unit are treated according to their means, the poor entirely free of charge. They are also provided with additional facilities as required, air mattresses, wheelchairs and prosthetics. The money is raised by means of donations such as zakat, and fund raising programmes in Pakistan and overseas.  £217000 were raised in Manchester, England, recently for the Spine Centre.

    All that medicine can do, however, is insufficient in the face of ignorance and lack of facilities in society at large. Disability is something any one of us may need to deal with, either in oneself or in a loved one. So a sensitivity to disability must be striven for. All persons, with or without a disability, any disability, require the same things: emotional support, and the ability to access facilities such as offices, hospitals, and shops. They need education at every level, school, college, university and libraries. They also need recreation such as cinemas, restaurants, malls and exhibitions.

    Just as everyone inside a building must be able to leave it to escape fires, which means every building must have a fire escape, every person outside the building must be able to enter it. But not everyone can do so, unless there are ramps and where possible lifts, in every commercial or government building small or large.

    This means the existence of laws accommodating this essential need, the enforcement of those laws, and a complete overhaul of attitude in Pakistan towards people who are different from the mainstream in one way or another. It is imperative to run campaigns, and provide education regarding disability in schools, and to train first responders who arrive first at the scene with an ambulance.

    What a difference it would make therefore, in more ways than one, if our national motto were amended to ‘Unity, Faith, Discipline…and Inclusion’, as a means of helping every person in the nation, man, woman and child from whatever background, with whatever ability, to lead a full, meaningful life.