Fighting for disability rights from the wheelchair

People must be empathetic to the needs of the disabled. Disability is not a curse. It can happen to anyone; an accident or old age can render one disabled in various forms. But it must not be a barrier to one’s independence,” says Neenu Kewlani.

“When you have a supportive family and friends, your disability will not matter much. They will work their way around to make you comfortable and included at every turn. My family is simply amazing,” says Sunita Sancheti.

Both of them have been disability rights activists for over 20 years now, not missing any opportunity to make their voices heard. They are the new members of RC Mumbai Bravehearts, RID 3141. “Rotary has given us a broader platform to help reach a wider audience,” says Neenu who is wheelchair-bound after a bout of polio when she was nine months old.

In August when the club had organised a badminton and table ­tennis tournament fundraiser, Sunita put together an exhibition match with 12 physically-challenged persons playing the ‘Badminton on Wheels’. “The aim was to send out the message that physical disability need not restrict one’s personal growth, and also sensitise agencies to provide accessible infrastructure to suit all people,” she says.

Sunita is paralysed waist down after a botched surgery for treating a tumour on the spinal cord when she was 16. She is comfortable on her wheelchair now, having undergone special training to manage on her own at a rehab centre in the UK, after nine years of struggle. “I was frustrated at first when I started using the wheelchair as it was bulky and ill-fitted. Back then there was no rehab centre in India that would prepare a person to manage her disabilities.”

She would find it difficult to shift from her wheelchair to bed, or to move from room to room; and would have severe body ache due to its structure, until she enrolled for sessions at a rehab centre in ­London that taught her to manage on her own, and choose the right wheelchair. “I understood that one wheelchair does not suit all. It must be ­custom-made and extremely user-friendly, bearing in mind that it will be used by a helper as well as the disabled person. Mine is personalised; it doesn’t have handbars and I can shift effortlessly from it to a chair or bed; the adjustable seat and other controls help me operate it easily.”

Sunita recalls her recent tour to Switzerland where she was able to go on the gondola, visit the museum, parks and other places as they were all accessible. The only hitch was that she lost her wheelchair that was put in her check-in baggage while boarding at Mumbai. Says Sunita: “It is not like a toothbrush/toothpaste that can be replaced. For me it is much more personal with personal settings.”

But the Swiss airport lent her a standby until hers could be traced ten days later. “They delivered mine at my doorstep there.” But it was broken and misaligned and she continued to use the airport’s wheelchair for the rest of her stay. “This is in sharp contrast to what I experienced at the  Mumbai airport when I returned.” As hers was unusable, the airport authorities refused to let her take the airport wheelchair home although she promised to return it after use.

Recalling her visit to the Taj Mahal she said, “We visited Agra a day after Stephen Hawking went. So when he was there at the Taj, it had ramps everywhere and was wheelchair-friendly. But when we went the ramps had vanished. That is our mindset.”

Sunita bats for more rehab centres in India to help the disabled cope better with challenges. She strongly advocates that there should be no discrimination in schools for the physically-challenged, the deaf or the mute. “We want to be in the mainstream. Only then other children will grow up understanding our challenges and learn to adapt to various situations.”

While in Class 12 she was rendered paraplegic and was not allowed to write her Board exams which she completed a year later. She is now proficient in filing IT returns and looking after the accounts of her family-run business. She counsels people like her, practises yoga and plays para badminton. “I had won a state-level silver in badminton back then. Post the accident, my friends compelled me to play, pooh-poohing my excuse of being on a wheelchair. Now I am as comfortable as any other able-bodied person playing the game.” She has even done scuba diving in a swimming pool.

The two feisty women have also done a course in wedding planning and event management. “This helped me plan my nephew’s wedding, and we saved ₹5 lakh,” says Neenu, a public speaker and an entrepreneur.

For her, disabled is not just the orthopaedically challenged. It includes a wider spectrum — speech-impaired, blind, people with mental disabilities, the elderly and full-term pregnant women too. Even short-statured and obese people come under this category. “All these people need some sort of accessibility assistance,” she says. For the blind, there must be auditory assistance, and proper signages at strategic places to help the deaf and the mute. “Even if you hire me on a government quota, if I am unable to come to the office, what good is that job for me,” she asks.

Disabled-friendly buildings

Building codes spell out that all buildings must be disabled-friendly and accessible. But all these are on paper only, she laments. As a norm, international airports/star hotels/IT offices abide by the global standards and they mostly engage experts in designing their building. “But the so-called experts do not apply their mind in designing disabled-friendly public places.”

Neenu cites difficult situations. “The bathroom door might be wide, the washbasin low, but the mirror will be placed at a height suitable for a normal person. Being confined to a wheelchair, how are we supposed to stand up to look into the mirror? And,  when a cupboard is installed beneath the washbasin, I can’t draw my wheelchair close to the washbasin.”

The railway platforms are a nightmare, she adds. “I have seen people crawl down the stairs at railway station. That is so undignified and inhuman. It is a struggle to climb into a train because of the wide gap between the platform and the coach.”

Sunita and Neenu have travelled across 28 state capitals and 40 cities covering 19,000km in 84 days promoting accessibility and advocating disability rights. “There are active organisations fighting for our rights. But then there is so much to be heard. We have been shouting slogans, doing events, filed PILs and presented papers to government departments. But the reality is that until it hurts you, you will not think about the challenges. Empathy is the key,” she says.

To give them more platforms and heighten the impact, club president Khuzem Sakarwala encourages the two women to make presentations at various Rotary clubs.