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

The medical curriculum in India looks at physical disability as a problem that need to be fixed Itrsquos a deficitbased view and has a negative connotation But using a wheelchair is sign of mobility and empowermentrdquo says Dr Satendra Singh who has lived with disability all his lifeSingh 42 is a polio survivor and cochair 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 mdash Vennila Palanivelu and Shivani Guptamdashwere part of the team that consulted on the Wheelchair Provision Guidelines published and released by the World Health Organisation WHO on June 5One 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 scantyShivani GuptaThe 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 713 per cent stated that they couldnrsquot afford a wheelchair and that it continues to be an ldquounmet needrdquoAccording to WHO estimates worldwide there are more than 13 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 worldrsquos population are likely to require a wheelchair to assist their mobility There is no such data available on IndiaThe problem says Singh is the lack of awareness about the ldquowheelchair prescription documentrdquo which the medical fraternity has access to ldquoMany doctors do not know about this document and hence donrsquot have knowledge about what kind of wheelchair should be prescribed for what kind of disabilityrdquo says Singh ldquoIf a person has a congenial disability hisher wheelchair need is different than that of a person who might have been in an accident or has diabetesrdquoHis 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 ldquoWe 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 wheelchairrdquo she saysThe WHO has defined the wheelchair as one that meets the userrsquos 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 costDelhi resident and wheelchairuser Shivani Gupta who has also coauthored 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 doesnrsquot have a comprehensive medical insurance policy for a person living with physical disability ldquoFirstly if you have a disability and you buy a medical policy you cannot claim anything related to the disability until three yearsrdquo 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 ldquoHence there is no industry where wheelchairs are made catering to a specific need or for its maintenance I currently use a powerwheelchair but when I had a manual one I had to get it fixed from a cyclerepair shop so you can imagine how bad the situation isrdquo she says