As USAID’s coordinator for Disability and Inclusive Development, Charlotte McClain-Nhlapo has a first-hand view of how disability is changing throughout the world. A paraplegic herself, McClain-Nhlapo travels between foreign locales to understand how the disability experience differs — and how to empower people with disabilities. She is full of amazing stories of progress from unexpected places like her native South Africa, where advocacy and policy have helped change attitudes and access, and Uganda, where thousands of people with disabilities have gotten involved with policy at the village level. Yet she is also aware of the many places where progress is far from a reality.
“I think there are some universal obstacles or barriers, and I think the most dominant one is attitude. It can be covert or overt, but it’s there. In some countries people still think disability is bad karma. In some countries people may not think of it as bad karma, but they still don’t see you as a full human being. Universally, there continues to be stigma and discrimination.”
To get a sampling of what life is like for people living with disabilities in other parts of the world, we talked with a number of individuals and have highlighted some of the issues in a series of short accounts.
Sudha Menon doesn’t mind the stares she gets when she goes out in her home state of Kerala, India. After 25 years living in India in a wheelchair, the 49-year-old C6-7 quad is used to her people’s unique response. “They stare a lot over here,” she explains. “Indians are very good at staring. In a way they feel like if they don’t look at you, it’s impolite.” She is confident that the stares and the attention are not one of the reasons that she rarely sees other wheelchair users like herself when she ventures out on the town. No, the forces keeping the millions of people with disabilities in the world’s second most populous nation out of sight are much more complicated and difficult to untangle.
“In India they think only old people use wheelchairs,” says Nikhil Gupta, a quad who lives in Delhi. “They will ask why so many of us are out. We tell them, ‘We are like you.’ But their faces show they don’t understand.” In India, physical obstacles like crowded roads with no sidewalks and old buildings are a constant problem, matched only by deeply ingrained social and religious values and traditions that often conflict with the independence that many wheelchair users dream of.
Menon has done her best not to let those obstacles stop her from living her life. She got married (and divorced), raised her son, works from home as a book indexer and manages her aging parents’ care and the maid and nurse who help maintain her home. “That keeps me very, very busy all the time,” she says. “I rarely have time for anything else.” The life she describes is not totally confined to her house in a residential complex in Kerala, but she admittedly lacks the independence and mobility she craves. The lack of accessible infrastructure makes her power chair mostly useless outside her complex.
“I don’t really go around the town,” she says. “It’s very crowded, roads are narrow and it’s not very comfortable. Unless, of course, if I go to a mall, then I can park the car and get into the mall and go around. Beyond that, it is not very easy.” Gupta also noted malls as one of the few accessible hangouts where he lives. In addition to frustrating wheelchair users’ social aspirations, the lack of access complicates the already difficult issue of finding work.
“In India there are so many problems for wheelchair users to get a job,” he says. “Offices are not accessible and people think we can’t do anything for them. We have so many unemployed people here without wheelchairs and they are giving jobs to them
Both Gupta and Menon agree that a big part of the problem is a general lack of understanding and expertise about the potential for rehab and independence. “If you go to other places in India, they are not very much aware of what’s involved in spinal cord injury,” says Gupta. “The condition of people with SCI is very, very bad.” Menon has traveled to the States for an expert opinion on her scoliosis. Gupta endured numerous UTIs and multiple pressure sores before moving to Delhi and finding new resources (see sidebar). Menon sums up the general attitude adopted by many professionals as “you are already in a wheelchair, just don’t get worse.”
Despite participating in online discussions and groups about disability, Menon feels little connection with the greater SCI community. “We don’t have much in common,” she says. “Just being in a wheelchair is not enough to make a friend with someone.” Being a woman in a wheelchair further complicates things. Menon lives with her brother and often finds herself frustrated by his paternalistic attitude — something she says is common in India. “It’s his house and I am expected to listen to what he says,” she explains. “When he says, ‘You don’t drive in this city,’ I am expected to not drive.”
She discusses her feelings with online groups she participates in and sees a growing movement for access and disability rights, yet she doesn’t see herself in it. Like many with SCI/D, she sometimes finds herself wondering what if. “If I could change something, it would be being able to be independent,” she says. “If I had that, then nothing else would matter. I would love to live for three or four days without anybody else around.”
Few things can trump a passionate advocate’s push for change, but as Samia al Sayed, 47, has learned, war is one of them. Al Sayed, who had polio, has dedicated much of her life to improving access and disabled rights in Syria and abroad. But for the past three years she has watched as civil war has literally surrounded her Damascus home. “We live on a hill and we don’t know when a bomb will come to kill you or make you disabled,” she says. “Now a lot of people have lost their legs or hands or become disabled — more than half a million people now have become disabled.”
According to the UN, over 100,000 people have died since 2011 in Syria and countless more have been disabled or displaced. The influx of new people with disabilities would seem to only bolster the importance of disability reforms, but she has found little public will to focus on those issues in the midst of war. “Before the war, the government tried to make some accessible places, but the war made everything different and changed the priorities,” she says. “Now it’s very difficult. The government doesn’t think about us these days because they have more important things.”
Al Sayed has already overcome so many obstacles that she refuses to let the war stop her efforts. She credits her parents with pushing her to success. “Because of my disability, they made me think about improving myself … because if you are a woman with a disability in Syria, it is so difficult to get married. You can’t find a husband and you have to learn to take care of yourself.”
Al Sayed earned a degree in engineering and was briefly married, but now lives with her mother. She works as an IT manager for a Damascus hospital. She is able to drive to work and work from home, but says the lack of accessible infrastructure keeps most people with disabilities at home. “The streets are not set up for wheelchairs,” she says. “We can’t go everywhere. We can’t use the public transit. We can’t easily go to the government.”
In her efforts to empower others, al Sayed works with a group of women “to help them go out and get more involved in the community.” Wealthier people can afford the high costs of cabs and care, but many of the less fortunate have no choice but to stay inside. Additionally, the less educated and more rural people tend to shy away from openly discussing disability. She is hoping to change this by starting comfortable conversations in smaller settings. She has helped some of the women start their own businesses from their houses and work towards greater independence.
Prague, Czech Republic
Pete Collman can’t help but laugh while retelling his three-year saga to get a disabled parking permit in Prague. “It was Kafka-esque,” he says. “Here’s a paper to get the paper done, and by the way, you have to get back in the same line to get the paper. It’s sort of a tongue-in-cheek dark Czech humor. But you like it, because that’s how it is.”
Collman, a T4-6 para from transverse myelitis, has been living and working in Prague for the past three years. While he still sometimes struggles to reconcile his American expectations with the post-Communist reality around him, he is optimistic about the nation’s steady progress and embrace of an accessible future. “They have come a long way in the last 20-plus years, and that is also true for people with disabilities,” he says. “When you look at the Czech Republic, they’re always adapting and changing their bureaucracy to speed up with the times — don’t get me wrong, it’s still got the shades of communism around it. That’s just how they manage these things.”
The numbers back up Collman’s observations about the country’s economic progress. In 2006 the Czech Republic became the first Warsaw Pact country to be recognized as a developed country by the World Bank, and the Institute for Economics and Peace ranked it 11th in the world on its Global Peace Index in 2014 (the U.S. was ranked 111th out of 162 ranked countries; the U.K. ranked 47th).
Collman is continually faced with evidence of the clash between the city’s 1,100 years of history and its rapidly changing present — e.g., a modern elevator in a historic clock tower or a ramp or curb cut on a cobblestone street. He says his FreeWheel is essential, a key to exploring many of the city’s less accessible and most beautiful older parts.
The metro is “pretty decent” but Collman says driving is a must — just don’t expect easy parking. “They don’t seem to follow rules on how many accessible parking places are designated,” he says. “It makes it very hard to find places to park. At times, depending on the cop, they overlook some rules so you can park some places but sometimes they don’t, so it’s really kind of ‘roll the dice’ on getting a ticket versus not getting a ticket.”
As important as the legal and architectural progress is, Collman draws even more encouragement from the evolution of public attitudes toward people with disabilities. His wife, a native, said it was rare to see people with disabilities in public during the communist era, as it threatened the idea that “everything was perfect.”
“Now you see people in wheelchairs in the streets,” he says. “You’ll also see more people walking with Canadian crutches or crutches.” The older generation sticks to cultural traditions wherein it is impolite to discuss disability with strangers, but Collman says more and more young people will approach him and initiate conversations about his wheelchair.
As attitudes change, so do institutions. Paraple, which translates to “umbrella,” is a modern rehab facility in Prague that goes beyond physical rehab — offering job training, social services and more — aimed at reintegrating people into society. “A lot of this is stuff that would be unheard of before 1989 and the Velvet Revolution,” he says. “This is all brand new to them.”
One aspect that has taken getting used to is the state’s universal health care. A leg infection landed Collman in the hospital for two weeks last year. Insured through the government and his work, his final bill was 700 crowns, or close to $40. “Yeah, that was great, but there’s a caveat,” he says. “The caveat is there were only three nurses for many people, and the facilities were outdated — it wasn’t fancy at all and it just wasn’t the same care.”
After getting the all-clear, Collman returned to the U.S. to verify he was OK. “I went to an emergency room here just to get things checked out. It was like I had fast-forwarded 200 years to the future. It was expensive as hell, but I had several doctors who were really focused and gave me all the tests I needed.”
Collman blogs and podcasts about his life in Prague at www.bohemican.com.
Rio de Janeiro, Brazil
If you listen to Emily Yates describe Rio de Janeiro and her experiences there, there is little doubt that she is in love with her new surroundings. With a smile and chuckle that could fill Rio’s famed Maracana Stadium, she is able to accentuate positive highlights about nearly every possible access issue: Restaurant access is OK, but outdoor seating is always great. Massive curbs and the absence of curb cuts are a problem, but a friendly hand is never far away. She frequently hears gunshots from her room but feels safe out in her chair as long as she doesn’t stay out late. Her cheery enthusiasm even makes her story of literally crawling up 50 filthy steps to visit a friend in the favelas [slums] sound reasonable, if not quite something to put on your to-do list.
“I’m loving it,” she says. “Even with all the violence and the poverty and everything you see in the media, it’s a really great place and people really do care.”
Yet underneath her stories of living in Brazil’s second largest city in a wheelchair, a dissonant picture of the tourist destination emerges that even she admits struggling to understand. “Everyone seems really happy, but still dissatisfied with the situation and also disenchanted with the fact that they can’t do anything about it. People seem almost a little bit powerless.”
While Yates was talking specifically about the disabled community, based on many reports, the same could be said about the general population. As one of the host venues for the recently completed World Cup and the site of the 2016 Olympics, the eyes of the world are squarely on Rio de Janeiro. The spectator events have drawn billions of dollars to Brazil’s already rapidly growing economy, highlighting the financial divide between the haves and have-nots, along with the many issues that come with that dichotomy.
Yates, who uses a wheelchair because of cerebral palsy, is cautiously optimistic that the buildup for the 2016 games will lead to improved access. She is working for Metro Rio, the city’s subway system, to raise awareness about access as it expands in advance of 2016. The subway is emblematic of the disconnect between attempts to create an accessible reality and actually doing so: It is “ridiculously accessible” on its own, but huge curbs often keep wheelchair users from independently accessing stations. Likewise, tourist destinations like Sugarloaf Mountain and the statue of Christ the Redeemer have gotten accessible updates, while the favelas and many neighborhoods have not.
She says she rarely sees young, healthy wheelchair users like herself out and about like she used to in her native Britain. “From what I’ve seen, I don’t think people with disabilities are encouraged to be as confident and ‘out there’ as people are in the U.K. and the U.S.”
After travelling to more than 40 countries and spending long periods of his life on the road, when Martin Heng decided it was time to settle down and start a family, he chose Melbourne, Australia. For Heng, Australia’s second largest city offered a unique blend of culture and recreation that made it ideal for raising kids. The city lived up to Heng’s expectations, but a few years after welcoming his third child, a bike accident left him a C4-5 quad. The accident, four years ago this November, gave Heng a new perspective on the city and culture he called home.
“Generally, Melbourne is a pretty accessible city,” he says. “We have many of the same problems here as you have in the States.” From a lack of curb cuts and accessible parking to people abusing disability placards, many of the physical access problems Heng describes are the same first-world problems NEW MOBILITY readers are accustomed to.
Heng commutes from his more rural home via accessible bus and is waiting for government funding to come through on an accessible van. Like many who live outside the city center, his transportation options are limited. Buses are accessible, but train and tram platforms are rarely the right height. Trains are “accessible” as long as you sit in the front where the conductor can see you to put the ramp down and note where you want to get off on a post-it note. “If they change drivers and the post-it note falls off, you’re in trouble,” Heng says. The media has covered instances of disabled riders getting stuck on trains, but Heng says they have done little to mobilize advocacy groups or legislators to improve access.
“In the disability circles there are mutterings, but the fact is you can get around, so it is not a high priority,” he says. “It’s utterly depressing that they’re proposing to spend another x-billion dollars on another road/tunnel link to go through the city — but are not investing money in public transport or upgrading facilities for the disabled.”
Even more depressing is the inequity created by the region’s unique approach to insurance. “It’s a two-tier system. If you’re injured at work or on the road, you’re fine because you’re compensated, and if you’re not, you have to fight and fight and fight for every penny,” he explains. “If you’re injured on the road, in a traffic accident, or if you’re injured at work, then there are two systems, called WorkCover and the Transport Accident Commission, where basically you’re insured for life. The provisions are very, very generous. All my care and my additional care is paid for, my rehab is paid for by the government, and with post-rehab all my care was paid for. They’ll modify my home, they’ll pay for my vehicle. Basically I’m looked after for life because I had a traffic accident. But if I had a spinal tumor, I’d be pretty much begging at the doors of Social Security.”
Heng rehabbed with an older gentleman who had been paralyzed with such a tumor and watched while he and his wife were left with no recourse but to sell their home so he could afford to be put in a nursing home. “It was just soul-destroying to see an elderly couple that had been together for 40 years and raised a family, and they had to separate because there was no way they could modify their home and no way they could afford the care. They were only getting four hours of care a week and I was getting four hours of care a day.”
Heng works as the accessible travel manager for travel guide publisher Lonely Planet. He is currently working on a guide to accessible Melbourne.
Finding Independence in India
So how do you help wheelchair users increase their independence in a country where access is limited, reform is slow and the very people you are trying to help don’t even know the extent to which their independence has been restricted? That is the conundrum that Jonathan Sigworth found himself facing in 2006 after rehabbing a C5-6 injury he suffered in India once he was back home in the United States. Though only in its infancy, the solution he came up with — a combination of peer mentoring and transitional living — is already changing lives and could provide a template for other localities to follow.
Sigworth was 19 when he fell off a cliff while riding his bike to class during a four-month study abroad in India. He ended up spending five weeks recovering from his SCI and a number of complications. By the time he returned to the U.S. for more extensive rehab, he had fallen in love with India and developed many lasting friendships.
Back home in the United States, Sigworth went through two and a half months of rehab and regained much of the independence he feared he had lost, thanks to the peer mentoring of fellow quads. As he did so, he realized that his paralyzed friends in India had no concept of peer mentoring and even less understanding of the potential independence it could unlock for them. Many had never seen a quad swim, solo-transfer or turn in bed. He made it a point to change that.
In 2007 he began what would become almost annual trips to India to show wheelchair users the techniques he had learned stateside. As shown in a documentary Sigworth produced on his trips, More than Walking, the results were life changing. “What we are really trying to promote is using your disability as your greatest strength,” explains Sigworth in the film. The idea of embracing a disability may sound cliché to Americans with disabilities, but self-empowerment via disability is a relatively novel idea in India.
Over the past eight years, Sigworth has developed a deeper appreciation of the obstacles facing wheelchair users in India while working to create change where possible. “The system is really corrupt and really sick, and if you want to get at accessibility, you’re going to have to fix that first. That has never really been a concern for me, because my main task has been teaching other wheelchair users how to navigate the streets and neighborhoods despite the lack of accessibility,” he says. “That was a huge gap that’s not being well addressed in India.”
Last year he took his biggest step yet, moving to Delhi to launch ESCIP Trust — Empowering Spinal Cord Injured Persons. The trust aims to create a network of peer mentors to help the thousands of people living with paralysis in India. At the heart of his effort is the ESCIP house, a first-of-its-kind in India transitional living apartment for quads in Delhi. “It didn’t dawn on me until I moved to Delhi that this was a new thing — the idea of having a transitional living home that’s run by mentors instead of therapists or hospital staff,” he says.
For Joseph Rodrigues, a C4-5 quad from Mumbai and current ESCIP resident, the experience of living there has been transformational. “It’s awesome staying here,” he says. “It’s totally different. You get to live a normal life, you don’t feel like a quad or a C4-5. I actually went out to the market and to a movie — so many places I would not have imagined I would be able to go.”
Rodrigues says he never used to go out in public without an attendant and now feels comfortable on his own. Living in the ESCIP house has improved his confidence as much as his independence. He is currently looking to land a job in a call center. He credits Sigworth for much of his progress.
“Jonathan is awesome,” he says. “His encouragement and support has made all the difference.”