‘I had to fix my wheelchair at a cycle repair shop’

A Mumbaikar struggles to carry his wheelchair in an autorickshaw. File pic

The medical curriculum in India looks at physical disability as a [problem that] need to be fixed. It's a deficit-based view and has a negative connotation. [But using a] wheelchair is sign of mobility and empowerment," says Dr Satendra Singh, who has lived with disability all his life.

Singh, 42, is a polio survivor and co-chair of the International Council for Disability Inclusion, practices at the College of Medical Sciences and Guru Tegh Bahadur Hospital in Delhi. He, along with two other Indians - Vennila Palanivelu and Shivani Gupta - were part of the team that consulted on the Wheelchair Provision Guidelines published and released by the World Health Organisation (WHO) on June 5.

One of the major issues facing people with physical disabilities has been the lack of data on which policies can be made. Information on development and production of assisted equipment like wheelchair, prosthetics, crutches and calipers, has also been scanty.

Shivani Gupta

The last guidelines issued by WHO was released in 2008. But what makes the latest document important and different is that it has been authored by 16 individuals living with disability or who work in the allied sector. The publication is also the result of an online survey of individuals with disabilities from 27 countries, both from developed and the developing nations. These include India, Azerbaijan, Bhutan, Burkina, Faso, Djibouti, Dominican Republic, Georgia, Indonesia, Iran, Iraq, Italy, Jordan, Kenta, Liberia, Maldives, Mongolia, Myanmar, Nepal, Poland, Rwanda, Senegal, Togo, Ukraine, China, Guatemala, Malawi and Tajikistan. Of those surveyed, 71.3 per cent stated that they couldn't afford a wheelchair, and that it continues to be an "unmet need".

According to WHO estimates, worldwide, there are more than 1.3 billion people living with disability, representing 16 per cent of the global population. There is limited data on the number of people within this population that may need wheelchairs. However, WHO has estimated that at least 80 million people or one per cent of the world's population are likely to require a wheelchair to assist their mobility. There is no such data available on India.

The problem, says Singh, is the lack of awareness about the "wheelchair prescription document", which the medical fraternity has access to. "Many doctors do not know about this document, and hence, don't have knowledge about what kind of wheelchair should be prescribed for what kind of disability," says Singh, "If a person has a congenial disability, his/her wheelchair need is different than that of a person who might have been in an accident or has diabetes."

His sentiment is shared by fellow author Vennila Palanivelu. A physiotherapist with Mobility India in Bengaluru, Palanivelu been leading the training of medical personnel since the last eight years. "We teach doctors and those in the medical fraternity how to prescribe a wheelchair. For instance, we tell them about the local products available, and how to assess the needs of the patients by carrying out the body measurements, before prescribing a wheelchair," she says.

The WHO has defined the wheelchair as one that meets the user's needs and environmental conditions; provides proper fit and postural support; is safe and durable; available within the country, and can be maintained and serviced in the country at an affordable cost.

Delhi resident and wheelchair-user Shivani Gupta, who has also co-authored the document, says that this is where India falls short. Gupta is a wheelchair design practitioner, whose expertise was sought due to her extensive research on wheelchair on the subject and her PhD on the subject in rural India. According to her, India doesn't have a comprehensive medical insurance policy for a person living with physical disability. "Firstly, if you have a disability and you buy a medical policy, you cannot claim anything related to the disability until three years," she says over a telephonic call. The most unfortunate bit, she says, is that wheelchair use and its maintenance does not fall under any medical policy. "Hence, there is no industry where wheelchairs are made catering to a specific need or for its maintenance. I currently use a power-wheelchair, but when I had a manual one, I had to get it fixed from a cycle-repair shop... so you can imagine how bad the situation is," she says.