Valerie Taylor's 77th birthday was on February 08. She was born in 1944 in a far away land, but she has lived in Bangladesh for half a century with a mission- a mission that has touched the lives of millions of people who were in dire need of support, compassion, attention, and care. She has been here to organise and provide care for the disregarded and abandoned socio-demographic component of this country-the physically challenged people.
Those who are familiar with her work or came in touch with her know how much affection and love she carries for the ailing humanity. When all of us have been in a mad rush all our life to earn and secure wealth, achieve success, gain fame, and become powerful, she was one of the very few who remained aloof from the worldly possessions and enticements- things that are all around us to blindside us, stain and crook our souls.
Providing care for physically challenged people is so much needed in Bangladesh and other low-and middle-income countries, yet it has remained mostly ignored as we have preferred to prioritise our attention, efforts, and resources to look after the health, safety, and wellbeing of the able-bodied healthy demographic segments of our society --the fortunate assembly who can look after themselves.
Data sources provide different estimates on the number of physically challenged people, but a widely cited reference has put it at around 10 per cent - that is about 16 million people in Bangladesh have some degree of physical challenge, generally termed as disability. This includes people with impaired vision, deafness, communication problems, autism, amputations, and a host of other physical and mental conditions. Despite having the immense need and going through unthinkable miseries, this large number of people with disability was left mostly unattended, uncared for and unguarded. Before Valerie Taylor had come, no one brought to the public eye their health care, rehabilitation and livelihood needs and the stupendous barriers they come across in accessing transportation, obtaining a job, earning a living wage, or engaging in social or recreational activities.
We, the mainstream Bangladeshi educated elites, have groomed ourselves very well not to think or worry about this ostracised segment of society. People in lower socioeconomic strata have a multitude of uncertainties and challenges in their daily life and within that social class, those with disabilities can only live at the mercy of others. Unless their family members, relatives, friends, and community are well-to-do and generous enough, begging for a living on the streets often remains the only alternative for them to survive.
Physically challenged people has barely any place in the mainstream society. Do we care about people with cerebral palsy or down syndrome or autism of any spectrum? Do we think about people who sustain a spinal cord injury or traumatic brain injury in a traffic accident, falling from a tree, during working at a construction site, or who slip while carrying heavy loads on their heads for a living? Do we ponder about those who lose limbs and whether they can afford or access prosthetics? We have no time to think about them; we are just too busy. We cleverly learned how to remain indifferent to the presence, needs, and rights of physically challenged people.
When we do come across people with disability around us, we often avoid making eye contact with them and make-believe that they were never there. Their presence makes us apprehensive.
Not very long ago, people in Bangladesh believed that those with disability were actually paying for the sins committed by their forefathers. Some people - particularly those living in rural or remote areas and those with lower educational attainment -- may still carry that prejudice.
We chose not to see them, care for them, but someone did. We preferred not to do anything for them, but someone did a lot for them. Someone from a far-away land came for them- a European white woman.
Valerie Taylor has been living all her adult life in Bangladesh. She created a great organisation to provide institutionalised care for the unseen and forgotten. Centre for the Rehabilitation of the Paralysed (CRP) is now one of the largest and most reputed names in South Asia that serves people who really need help.
CRP does not only provide medical and rehabilitation care, but it also develops programmes for disability prevention; it educates people with disability on how to get back in life; it advocates for them; it helps them network with employers; it raises mass awareness about disability issues; it provides vocational training so that they can earn and may live independently.
CRP's programmes were largely based in Savar and Dhaka. It is trying to expand its services across the country, and it has opened 13 regional centers. This expansion endeavour is the primary reason why Miss Taylor at this age goes to the US, UK, Australia, Canada, and other countries where large groups of affluent Bangladeshi immigrants live. The non-resident Bangladeshis have been quite generous and organise annual fund-raising events for CRP and have supported Miss Taylor advance her noble mission of spreading disability care provisions across Bangladesh.
CRP now employs more than 1000 people. It delivers free services to the poor or subsidises the costs as much as it can with donors' support. CRP admits about 400 patients a year with spinal cord injury and became one of the largest acute spinal cord injury care providers in the world.
According to estimates by the World Health Organisation and International Society of Prosthetics and Orthotics, 0.5 per cent of Bangladesh population- that is around 750,000 people- need prosthetic and orthotic services. Affordable assistive devices particularly mobility devices are useful tools to help restore the functioning of individuals with disability. CRP develops assistive devices featuring low technology considering the rural housing structure, dirt roads, and weather conditions of Bangladesh.
CRP also tries to educate the NGOs, stakeholders, and government policymakers about the needs and rights of people with disability. It works collaboratively with partners on designing and delivering disability-friendly transportation facilities, offering modified housing options, and providing discounted and subsidised assistive devices. It advocates for the rights of people with disability and raises awareness so that employers, industry associations, workers' groups, and human rights activists may make accommodations in the workplaces to create employment opportunities for people with disability.
Valerie did not stop there. She founded Bangladesh Health Professions Institute (BHPI) to offer degrees in Physiotherapy, Occupational Therapy, Rehabilitation Science, and Speech and Language Therapy to grow a generation of rehabilitation service professionals. BHPI has kept its tuition fee low so that the students from disadvantaged families can also get into these programmes.
Thanks to Valerie Taylor for sensitising us about the life, rights, health, and wellbeing of people with disability.
Hasnat M. Alamgir is a Professor of Public Health.