Cover Story

The Fight to Save CRP

Aasha Mehreen Amin

Surrounded by the soothing presence of tall, leafy trees and adorned by little patches of greenery is a sanctuary tucked away in an enclave in Savar. It is a refuge for the paralysed who would have lost all desire to carry on with life if it hadn't been for the love and care of a woman who has dedicated her entire life to bring solace to thousands. There are few people who have not heard of CRP (Centre for the Rehabilitation of the Paralysed) and its founder Valerie Taylor, who is seen by the patients and their families as a guardian angel spreading hope and the reason to live.

Valerie's soothing words can cheer up even the most desperate. A patient with a broken neck who is paralysed neck downwards uses a mirror to talk as he cannot turn his head.

As we are taken on tour by Valerie herself, we are cheerfully greeted by many--some on wheelchairs, some using walking aids, some lying flat on beds, paralysed from the waist down. Incredibly, there is no pain in their faces, no pent up anger at their cruel fate, only happiness at being greeted by someone they have grown to love and see as a mother. That is the magic that this waif-like woman with the energy of a twelve-year-old makes. It is the same when we go to the room where children with Cerebral Palsy are playing. Everyone is smiling, some of them run to her and hug her, reluctant to let go.

But it is not all happy and hopeful in this centre where many come after terrible, life-shattering accidents, losing their ability to move. In one of the wards we are taken to we meet just admitted patients. They are lying flat on beds with special devices that allow them to turn without being manually moved and to relieve the terrible pressure inside their heads. They are all paralysed neck downwards.

Watching a cricket game. At CRP life goes on, despite the formidable odds.

Litton, a young man from Bikrampur, lies helplessly on the bed. He broke his neck when he slipped while trying to carry a 74kg bag of flour. He can only move his hands a little. Lying next to him is 40 year-old Abdul Majid, another labourer who became paralysed neck down after carrying a 50 kg bag. “I can't feel any sensation in my entire body for the last fifteen days since the accident”, says Majid. There are many more with such devastating injuries and many more will come. Most of them will need a fixation operation to repair their displaced spine. Valerie adds that the patients and their families think that after treatment there will be full recovery but in reality they go home in wheelchairs, requiring a lot of attendance.

The majority of the patients are poor and sell whatever they have--cows, land, or take loans with high interest rates the operation costs can go upto 40,000 taka. A patient, upon admission has to pay around TK.18,500. This includes an advanced payment of TK 12000 for a bed for the first two months plus a wheelchair cost of TK 6,000.

A child with Cerebral Palsy at CRP.

Valerie with her daughter Poppy.

Children with Cerebral Palsy at CRP are treated with a great deal of patience and love, a wonderful lesson from Valerie Taylor.

Valerie Taylor an angel of hope

All this seems anomalous with the CRP everybody knows, the institute that has helped thousands of poor, paralysed patients to heal and resume life despite their severe disability. “The patients and their families are being financially crippled from the very moment they come here because their only source of income has been sacrificed for treatment,” says Valerie sadly. “CRP's focus has always been the poor, instead it is becoming like just another private institute”.

Before, those who could not afford it were treated free of cost or would have to pay subsidised fees, depending on the patient's financial condition. “There was an ayah at the canteen whose seven-year-old daughter needed an open-heart surgery that would cost Tk 54,000. Her monthly salary was Tk 4,300. CRP covered the cost. In my simple calculation, if Shahida could give Tk 500 every month, then she would have paid the whole amount in 9 years.” The basic idea at CRP had always been that patients would pay according to their ability.

Now however, things are very different with patients, regardless of how poor they are, having to pay lump sums of money (as much as 18,500) upon admission.

So why do poor patients at CRP have to pay so much? Why is it that all of Valerie's efforts for the last 27 years to raise funds overseas and build CRP into an organisation that treats as well as rehabilitates disabled patients, are being nullified? The answers to these two vital questions unravels a shameful tale and utter disrespect for both Valerie and the poor people who have always counted on her for help.

Trouble started brewing as far as 2004 when CRP's board had to fill the position of the long time administrator and director who had decided to work overseas after completing his PhD. In normal circumstances it would be the board and Valerie who would have decided on the next director. Instead, CRP's major donor FCRP (Friends of the CRP) in the UK sent a letter asking the board to take heed of their recommendation to make FCRP's representation in the board stronger since they funded around 22 percent of CRP's expenses.

Mohiuddin Babul with his wife. Babul has his own small business in electronics. Mohiuddin Babul is another man we meet at Valerie's home. Cheerful and matter-of-fact, Babul was a patient of CRP 23 years ago. Although paralysed from waist down, Babul has managed to set up an electronics business in Dhaka, manufacturing spare parts like ballasts and stabilisers. Babul was only 23 and a student of Dhaka Poly-technical School when he fell from a tree and injured his spinal cord. After one and a half months at the Pangu Hospital Babul was taken to the CRP clinic at Shankar. Within eight months Babul was able to lift himself and use a wheelchair to move. “When I went home I was very frustrated”, says Babul, “I was the only son, my father was not well off, I told him I had to do something.” In 1986, Babul began doing small electronics repairing jobs and later opened up his own shop. It was from here that Babul worked on to start his own business. He also worked as an electronics trainer at CRP for eight years. He got married and had a son who is now in Class eight at Shaheen School. “When I started going to CRP, my life started” says Babul, “ Now I don't even feel as if I am on a wheelchair. I do everything; I go to the mosque, bazaar, visit my shoshurbari (in-laws) everything..”

Valerie, sharing a joke with a patient at CRP. The young man was a victim of the terrible garment factory building collapse at Savar that left him paralysed waist down.

In January 2006 FCRP nominated former foreign secretary CM Shafi Sami and another FCRP trustee Leena Alam to be on the board. They also suggested that Sami be made CEO as well as managing trustee of the board so that he could radically change the organisation's structure so that the board and FCRP have greater decision-making powers. What was most shocking was that the CEO's annual salary was fixed at a sum of 22,000 pound sterling which would be an exponential increase from the previous director's salary. All this was arranged and determined without the knowledge of Valerie and at least two board members who were sympathetic to her. This was just the beginning of undermining Valerie's authority.

Sami (who resigned from the post of CEO in July 2006 but remained a managing trustee) sacked a number of long-time CRP staff without telling Valerie and promoted several others as well as increased their salaries by 80 percent. According to the trust memorandum, Valerie had been selected as the signatory along with the chairman of the board. Soon, Valerie found that she was no longer signing the cheques as the person she had entrusted with signatory power when she had gone abroad, did not give back this position to her. Valerie was finding herself increasingly isolated and ignored. Much to Valerie's dismay, she had to witness the helplessness of poor patients who now had to pay large sums they could not afford, in terms of fees. The only way they could pay was by selling off whatever assets they had, thus becoming destitute. According to Valerie a number of documents that contained her signature were not properly explained to her and she had signed them in good faith.

CRP was losing its original character of being an institute for the poor. The board could have resolved the matter but it was highly divisive, meetings were irregular, many trustees did not attend the meetings and often minutes of the meeting were not recorded properly. Valerie's repeated attempts to alert FCRP about the situation seemed to have no impact at all. Instead, one of the new trustee members sent a letter to FCRP, UK and the British Charity Commission stating allegations of mismanagement against Valerie.

Last month a letter issued by the board informed Valerie that she is no longer a coordinator of the organisation and would remain as an 'advisor' which means that she would have no executive powers.

CRP was established in 1979, when Valerie, a young woman and a physiotherapist converted an abandoned warehouse behind Suhrawardy Hospital into a makeshift clinic for the paralysed. The organisation now employs 462 people at its Savar centre and has an annual budget of Tk 10 to 12 crore.

Everyday new patients come in hoping that they will go back to their old lives when they could walk and move their arms and legs. Soon they realise the horrible truth that they will have to live with a permanent disability, one that places a heavy burden on them and their families. But at CRP they have always been taught to fight back against the hopelessness, to regain their strength to live productive lives despite such daunting odds. For patients at CRP this inner strength is just as necessary as the top quality treatment that CRP has always provided. It is Valerie Taylor's incredible vision and spiritual commitment that has made this remarkable institute a symbol of hope for the poor. The recent developments at CRP that have served to take away her executive powers are an outrageous display of highhandedness and shortsightedness. It will endanger the organisation's identity and deprive thousands of people who fall victim to terrible accidents and cannot afford treatment.

Coming Back - to Life At Valerie's cottage we meet quite a number of people. There is Poppy, one of Valerie's adopted daughters who has Cerebral Palsy. She is constantly on a wheelchair and her movements and speech are laboured. Yet it is hard not to be charmed by her mischievous smile and witty remarks as she watches a movie on the computer, using her legs. Anil Bhowmik, now the Chief Engineer at Gonoshasthya Kendra in Savar. Soon other people come. A middle-aged man in a wheelchair comes in with his attendant. He cannot walk and the use of his hands is very limited. This is Anil Bhowmik, now the Chief Engineer of Gonoshasthya Kendra, in Savar. Using sophisticated engineering software, he has designed many projects at Gonoshasthya's hospitals and has always gone to each project site for inspection. He has recently been doing research on arsenic contamination in water and has developed a project to procure arsenic free water very cheaply. Anil works from 10 to 14 hours a day', he is happily married and has two children. But the bitterness is palpable even when he speaks of happier days. He cannot forget what might have been if those few seconds of his life had not taken place. Anil was at that time a bright young 3rd year final student of Rajshahi Engineering College. He had been first class fourth in the third year. He had gone swimming in the campus pool. All he can remember is that one minute he was diving into the pool and the next thing he knew he was being pulled out of the pool by his friends. He could not move at all or even feel anything. He had injured his spine and would be paralysed for the rest of his life. Anil was taken to Rajshahi Medical College where he stayed for five days. He had developed sores and his skin started to rot. His brother then took him by special ambulance to Dhaka to PG hospital. Later he was shifted to the Pangu Hospital. Anil describes his ordeal of going through one operation after another and the long hours of utter despair that he felt. He resorted to drugs and then alcohol. “I did not want to live and constantly prayed for my death. I could only move my head and I hated the fact that I would be a burden to my brothers for the rest of my life”. In 1985 Anil came to CRP, then a little rented house in Shankar, and met Valerie for the first time. “She started helping me to write; my hand balance was extremely bad. It was like a child writing his first letters. I wrote A, B, C, D and the Bangla alphabets”. Side by side Anil was given regular physiotherapy. Within a few months Anil had managed to get over his addiction to alcohol and found new hope through his ability to write again. At that time Valerie and a woman named Irene Samad, a British national and member of the British Women's Association informed him that he would be sent to college. They were ready to send him to BUET. “But I wanted to go back to Rajshahi Engineering College as I was familiar with it”, says Anil. There was also the problem of getting a constant attendant which his family could ill afford. In February 1985 Anil appeared in Fazle Lohani's famous TV show 'Jodi Kichu Mone Na Koren' and the publicity got him into Rajshahi Engineering College. But things did not work out too well for Anil and eventually Anil and his attendant had to come back to Dhaka, renting a small tin shed in Nilkhet. With the help of his family and support of Valerie, Anil applied for a job at Gonoshasthya. It was Dr. Zafrullah who gave him his next break, something that changed the course of his life. He joined as a project engineer. There were more good things in store for Anil. While in Rajshahi, before the terrible accident, Anil had come to know an attractive woman called Rekha Rai. It was the same woman who kept visiting him later when he returned to Rajshahi. It did not take long for the two to decide that they had found their life partners and soon they married. Anil is grateful to many for his remarkable success Valerie, Dr. Zafrullah, Brigadier Bradley, Irene Samad and many more. But among these CRP has a special significance; it is where life started all over again for Anil when he thought it was almost over. “I will always consider myself to be a CRP member.”

Photo: Zahidul I. Khan

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