Disability and rehabilitation

India: Alexis Leon

Alexis Leon became spinal cord injured as a result of a road traffic crash. He describes the difficulties with accessing health care facilities and receiving good quality, appropriate health care.

I was involved in a road traffic crash in 1993 which resulted in spinal cord injury at the T5/6 level. I was paralyzed from the chest down. In the case of spinal cord injury, if you can get to a hospital soon your chances of minimizing the effects of the injury is more. I reached the hospital within 10 minutes after the crash. Once the wounds of the surgery healed a month later, I went to another hospital for rehabilitation. At the rehabilitation centre, I was told that my goal was to use a wheelchair independently. At that point I realized that I would not walk again. At the rehab centre, I was taught to be independent and the doctors provided me with answers--truthful answers--to my queries. They prepared me as best as they could to face the real world.

Six months after my accident, I rejoined work as a software consultant at a top software company in the country. The company provided me with accommodations like a ground-floor office, a separate bathroom, etc. Because neither the office nor my flat were wheelchair accessible, I had to install removable ramps at both places. Accessibility to other buildings was another problem. While all the big hospitals were wheelchair accessible, clinics like those of a dentist, ophthalmologist, etc. were not. Some were even in the second or third floors of buildings but did not have elevators.

One of the major problems that I faced after leaving the rehab centre was finding doctors who were familiar with spinal cord injury and the specific needs and problems of spinal cord injury patients. For example one problem was autonomic dysreflexia (AD)* . Almost 90% of the doctors outside the rehabilitation centre were unaware of such a phenomenon. So almost every time I had to explain that I will have AD when my leg bag is full or if the position is uncomfortable. Even after mentioning it, they forget to regularly check the leg bag and I often wound up AD. I used to take my brother along to regularly check for the signs of AD. There is no special care or assistance for spinal cord injury patients. If you don't have good connections or good doctors as your friends, then your chance of getting quality medical care as a person with a spinal cord injury is greatly hindered.

In summary, receiving proper medical care is difficult for persons with spinal cord injury. If the patient is educated and does own his/her research, then he/she has a better chance of getting quality medical care. Even though the majority of health care professionals who do not appear to care much about spinal cord injury patients, there is a minority who do all they can to make the life and hospital visits as pleasant as possible for spinal cord injury patients. It is the generosity and kindness of these few magnificent men and women who help me remain positive and optimistic.

*Autonomic dysreflexia (AD) is a potentially life threatening condition which can be considered a medical emergency requiring immediate attention.