Challenges for the differently abled

add_main_image It only took a moment for Shivani Gupta’s life to change irreparably in 1992. It was a Friday night, and Gupta was dropping a friend back to his hotel. The hospitality graduate from the Institute of Hotel Management in Delhi had recently started her first job—as guest relations executive at the Maurya Sheraton hotel. Sitting in the back seat of her friend’s beige Maruti 800, she remembers chatting amiably with her friends as they drove down a particularly dark strip of road.

What happened next will always be etched in her memory: There was a white blur, as an animal darted in front of the car. The driver swerved to avoid it and the vehicle spun out of control. The car rolled over and Gupta was thrown out of the door on the asphalt.NextMAds

“When I hit the pavement, it injured my spine,” she says. “It was pretty instantaneous.” She woke up in a hospital, unable to move either of her legs or her right arm. She was told the accident had made her a tetraplegic, and that she would never walk again. “At the age of 22, you suddenly become a wheelchair user, and you worry about how you’ll face your acquaintances and friends,” she says. “It was a very difficult time.”

The issue of accessibility is not one that most people ever have to think about. But even after she’d became comfortable in a wheelchair following many months of long, painful physical therapy, Gupta was faced with an equally difficult emotional reality: Delhi, which she had once viewed as a land of opportunities, had transformed overnight into an obstacle course that she was incapable of navigating on her own.

“Suddenly things are completely inaccessible. You can’t use the public transport system, and you can’t go back to your job. Simple things like going to a movie are out of question—those aspects were by far the most difficult for me to accept than the mere loss of limbs.”

Before the accident, Gupta had lived in a second-story flat. “After the accident, I never entered that apartment again,” she recalls.

Then, there were the practical aspects: Gupta found that she couldn’t get into a bank (nearly all of them have one or two steps leading to the entrance) or enter a teller machine booth (the doors are too narrow for her wheelchair). Nor could she enter most markets—many of which require climbing stairs.sixthMAds

Buses were equally inaccessible. And while she was able to enter some malls, she had to plan ahead or limit her trips. “Most malls don’t have wheelchair-accessible rest rooms,” she notes.

This week (17-21 September), Delhi is hosting the 2012 International Transed conference, which meets annually to discuss the accessibility and mobility challenges faced by the growing number of elderly and people with disabilities across the globe, and to showcase new technology and research solutions.

A 2007 World Bank report estimated that 4-8% of India’s population, or about 40-80 million people, are disabled. Even so, the issue of accessibility has not figured high on India’s priorities, often taking a back seat to issues that affect a larger slice of the population, such as maternal and infant mortality rates, education, or poverty alleviation programmes.

But as more Indians age, the number of people adversely affected by poor urban planning will spike: A 2012 report by the United Nations population division estimated that by 2050, roughly one-fifth of India’s population will be over the age of 60, representing a total of 323 million people, a number greater than the current population of the US.

“The issue of accessibility is not just a disabled persons issue,” says Sminu Jindal, founder of Svayam, an initiative of the SJ Charitable Trust that works closely with the central and state governments to make public spaces more accessible for people with mobility challenges. “This issue affects everyone with ageing parents. That’s all of us.”

Many middle-class families are already beginning to feel that pinch.

Nirmal Madan is a 75-year-old woman who lives in a sunny ground-floor apartment she shares with her 82-year-old husband in Mandakini Enclave in the capital. When she was younger, Madan had a very active social life—she spent much of her time volunteering with women’s empowerment organizations, she and her husband patronized music shows and other cultural events, rarely missing a performance at the Delhi repertory theatre. Recently, however, she has become all but house bound, after severe spinal arthritis has made it difficult for her to navigate Delhi’s uneven terrain.

She says she’d like to be able to take short walks in the neighbourhood, but due to poorly maintained sidewalks, even that is impossible. “The pavements are absolutely encroached upon, and the kerb is so high, I cannot climb it. For a young person it doesn’t matter if it’s high. But for me, it makes all the difference in the world,” she says. “They spend so much money, why can’t they do it properly? It’s very insensitive—they should be made friendly not just for the disabled, but also for ordinary persons and the elderly. Money is being spent, but it’s not being properly utilized.”

Accidents or illnesses leading to permanent disability can strike anyone at any time. When Meenu Vadura became blind in her late twenties after contracting retinitis pigmentosa, a degenerative eye disease, she found herself suddenly dependent on others for nearly everything. Formerly, a school teacher who lived alone and commuted to work using public transport, today she requires an escort—someone who can guide her by the arm—to do even small things.

She briefly considered trying to navigate Delhi independently with a cane, but discontinued this due to concerns about open potholes, uneven terrain and unfriendly pedestrian crossings, she says.

However, for Vadura, the most difficult aspect of her transition from able-bodied to visually challenged was the social stigma that went along with it.

“There’s no sensitivity among people here about disability. It maybe a little better than it was before, but more people still need to be sensitized—that any sort of impairment doesn’t mean that a person is good for nothing,” she says. “People treat you as a non-person. Either they hover all around you—‘oh, can we do this for you, can we do that for you?,’ or it’s ‘poor thing.’”

Jindal believes that public sensitivity and improved infrastructure go hand-in-hand. “In many countries users (people with disabilities) are able to live as independently as you or me, provided there’s proper infrastructure,” she says. “But India doesn’t have that.”

According to Jindal, there are many small ways to make a city more accessible for people with differing needs: unobstructed, smooth sidewalks, stairs with proper hand rails, buildings with all level differences addressed by way of ramps with the right gradient that allows independent access or elevators, wider doors with handles that are placed within the reach of wheelchair users and public toilets with at least one unisex accessible toilet block fitted with hand rails, are just a few small changes that could improve India’s accessibility profile immeasurably, according to Jindal.

Unfortunately, few Indian cities have any of these: In Mumbai, apart from Marine Drive, sidewalks are virtually nonexistent, and no cities apart from Delhi have low-floor buses, according to Abha Negi, director of Svayam, though there are some exceptions.

“If you look at Chandigarh, it’s such a planned city, with dedicated cyclist pathways that have been incorporated over a period of time. The place is a delight to walk through,” she says.

Similarly, Amritsar and Jalandhar in Punjab have made efforts to improve accessibility.

While most other Indian cities are far behind, Negi believes the national capital actually is one of the few making something of an effort. “Delhi is actually providing a kind of beacon that others can emulate. It’s actually providing solutions that others can adopt and adapt—it’s showing the path forward,” she says.

In an effort to raise awareness about the importance of universal access, Svayam has been conducting “accessibility audits” of public spaces around India—including national monuments, public bus and train terminals, and public toilets, to name only a few. The results have not been encouraging.

“Delhi is probably one of the most accessible cities in the country, but it still offers accessibility in pockets,” says Negi. “There are accessible buses, but most bus terminals are too high off the street. Few have properly graded ramps and bus drivers don’t generally stop close enough to the kerb. Trains are totally inaccessible. Even though the metro offers a model for accessible public transport systems, connectivity to the metro stations is still an area that needs to be addressed. It’s as much a matter of awareness as of proper planning.”

After Gupta’s accident, she had to re-learn how to navigate the city she’d lived in all her life. Early on, she resigned herself to the fact that she might never again be able to visit many of her former favourite haunts. However, she found herself less prepared for the loneliness that went along with it.

“The thing is, when you become disabled, you become dependent in so many ways. I would avoid going out with friends because I knew that everything was inaccessible, and I didn’t want to put them through the extra burden of taking me,” she says.

“So the fact that things are inaccessible affects people in so many different ways—it definitely isolates people.”

For a while, Gupta worked as a peer counsellor at the Indian Spinal Injuries Centre in Vasant Kunj in Delhi. Then, she got a scholarship to study architecture and inclusive design at the University of Reading in the UK, where she was astonished by the contrasting urban landscape. “I could use the public transport system, the pedestrian environment—pretty much I could get everywhere. And that’s not just true of people in wheelchairs and on crutches—but people with all sorts of disabilities,” she says. “That really changed my mindset.”

Determined to use the tools she had learned in the UK to help Indians with different needs live more independent lives, Gupta founded AccessAbility, a for-profit consulting firm that works with architects in the hospitality industry to design hotels and resorts that people with disabilities can also enjoy.

“Building a hotel that is accessible for people with disabilities is no more expensive than building one that isn’t, provided it’s planned into the design stage,” she explains. Since starting AccessAbility, Gupta has travelled all over India to act as a consultant to builders in the public and private sector on accessibility issues.

But, while easy in theory, effectively implementing accessible designs in India can prove difficult. Amit Talwar, an architect for state-owned phone company Bharat Sanchar Nigam Ltd, says lack of sensitivity and training on how to properly implement designs can stymie even the best-laid plans. Afflicted by polio as a child, Talwar navigates the city with a cane, and tries to include universal designs in the plans that he’s associated with.

It isn’t always easy. “The basic issue isn’t about laws—it’s more about the lack of awareness and sensitivity in our society,” he says. “It’s only been in the late 1990s that accessibility features were made mandatory for public buildings in India. So, consequently a large portion of the practising architects today never received training from this perspective; they may have trained themselves, but their mindsets aren’t there yet.”

And while laws may require new buildings to incorporate accessible design, many builders cut corners to save money. “India has great laws on the books, but implementation can be a problem,” he adds.

Things are slowly changing. Svayam has been working closely with various state governments—in Gujarat, Himachal Pradesh, Uttarakhand, Punjab, Haryana and Delhi—to provide access strategies that can be implemented. Some of the work has already paid off: Both the Qutub Minar and the Red Fort, the two world heritage sites in Delhi, are accessible to all; the Delhi Transport Corporation, which runs the city bus service, has agreed to make new bus shelters accessible.

More will be needed before India’s cities can become less unfriendly for all of its differently-abled users.

“The hardest thing to accept is not being able to participate in so many activities simply because of inaccessibility,” says Gupta. “It’s not because of my limitations, I have a disability—it’s the inaccessibility that truly makes you disabled.”