A Hard Sri Lankan Life: Living with a Physical Disability

“In Sri Lanka, living, itself, is difficult.  But Sri Lankans are amazingly resourceful and resilient, able to persevere through the harshest challenges with dignity and composure.”

Obstacles to helping the disabled community in Sri Lanka

In our two weeks in Sri Lanka, we have met with International NonGovernmental Agencies (INGOs), local NGOs, and two main rehabilitation centers in the country.  There are a lot of individuals and organizations doing good work helping the disabled community, but there are still many needs that need to be addressed.  There are also some major challenges to helping disabled individuals in Sri Lanka, and below we have identified the main ones.

Access to the disabled is difficult:  

Sri Lankans living with physical disabilities have limited access to the outside world around them.  Dirt and rock-laden roads, doorsteps and stairs, narrow doorways, and social stigmas keep disabled people indoors.  Disability rights and regulations are not the “law of the land” – despite new disability legislation, housing, transportation, and commercial buildings/services remain  inaccessible to those who use wheelchairs (see HealthExchangeNews).  Medical services are limited and medical insurance is virtually nonexistent.

Traveling in Sri Lanka is  an enormous challenge for those who have physical disabilities. The majority of Sri Lankans that are disabled are poor and live in remote villages connected only by dirt roads that many travel afoot. Few can afford to take private or public transit and accessible transportation simply does not exist. Buses, tuk-tuks (3 wheeled tri-shaws), cars, and trains are small, jammed-packed with people, and do not have accommodations for individuals with disabilities. Accommodations for a wheelchair user is simply not a consideration.

If you use a wheelchair, your life and livelihood are home-bound. You rarely leave the vicinity of your house or your community. While the house is “home”--- it is far from comfortable for those with disabilities. In the poorer communities, houses have dirt floors and many of which may not even have electricity. Bathrooms are located in makeshift outhouses with ‘squat pot’ style commodes and buckets of water for washing. In middle-class areas the houses may have electricity and indoor plumbing, but they still use washing buckets, narrow doorways, and stairs. Air conditioning is for a privileged few in the Sri Lankan society--- which makes the hot, humid weather even more dangerous for secondary complications,  especially for those who have severe spinal cord injuries (e.g., skin breakdown, bacterial and fungal infections).

Once patients  return to their homes after their hospital and rehabilitation, they often do not want to return.  At home they establish their role in their family and a routine for daily living, so for them there is nothing to gain from the chore of returning for more treatment, training, or therapy.   A disabled individual’s reluctance to travel beyond his community, the remoteness of his village, and the inaccessible Sri Lankan infrastructure combine to make it dreadfully difficult to reach him at all, let alone help him begin to reintegrate into his community.

A Uniquely Sri Lankan Bureaucracy:


Sri Lanka is a hierarchical society.  In order to do any business,  individuals and organizations must navigate a ladder of puzzling approval stages.  This is time consuming, and what is required at one stage might contradict the requirements of another.  International NGOs are regulated by both the Ministry of Health AND the Ministry of Defense, which can add to the confusion.  One needs to develop unceasing patience and a good sense of humor to work within the Sri Lankan bureaucracy.  The director of one INGO, for example, gets his visa approved only one month at a time, so he needs to reapply for a new visa each month.  Another director needed to hire four full-time staff just to handle the mountain of paperwork.

Attitudes


Collectivist society:  In Sri Lankan culture, the extended family takes supreme importance.  Three or more generations, adult brothers, their parents, wives, and children, all live communally.  Except in rare instances, everyone has a family to support and protect them.  Although there are numerous benefits to this model, it can be a barrier to getting disabled individuals to be active and independent.  Even most healthcare workers believe that, once a disabled person is medically stable, she has been educated about her personal care, her home has been modified and she receives essential items such as a wheelchair, no more needs to be done.  There will always be a family member there to take care of her, so she is as integrated into the community as she can be and is considered “independent.”

Social Stigma:  Many Sri Lankans believe that it is a bad omen to have someone with a disability in the family.  Because of this social stigma, often a family shelters the disabled person not just to protect her, but also to keep her out of the inquisitive judgmental eyes of the community (see Southeast Region Migrant Resource Center, 2010).

Low Expectations:  In general, the Sri Lankan community does not expect differently-abled individuals to do much.  The most that can be hoped for is that the person learns to make a handicraft or low-skilled product to sell.  There is a perception that higher level jobs are beyond the mental and physical capacities of the disabled person.  Therefore, there is little need to make businesses, government offices, and other institutions of society and commerce more accessible.

Yet the Sri Lankan people persevere!

In spite of the daunting challenges described above, we have noticed several positive signs that give hope that we can make a difference here.

For example, although the infrastructure of Sri Lanka is far from being accessible, most people here have cell-phones, and incoming calls are free.  This is a valuable asset in helping reach and stay connected with the individuals we are trying to help.  In terms of the maze of bureaucracy, we are heartened to learn that, as long as you comply with the regulations set by the government, local and international organizations are able to do work and make a significant impact in Sri Lanka.  Ultimately, the Sri Lankan government wants to provide for ALL people, so although the process is slow and complicated, progress can be made.

The biggest asset here is the incredible resourcefulness and resiliency of the Sri Lankan people!  The limited resources pose a challenge, but bathing chairs are adapted from wooden dining chairs (the arm of the chair swings down on hinges),  mirrors are attached to long sticks or pipes, and cuffs and splints are fabricated with locally available materials (e.g., cloth, rope, etc).  For those who are not  lucky enough to get donated wheelchairs, wheelchairs are constructed by attaching wheels to dining chairs or lawn chairs.  We have seen a handful of physically disabled individuals slowly travelling on the side of the road in homemade, hand-propelled tricycles or on makeshift skateboards pulling themselves along with their hands.  We also have heard of a woman who lost both her legs during the war.  Each morning, two people help her onto a bench in a stall where she sells handicrafts to passing motorists.  We also heard the story of a father of three young girls who lost his wife and one of his arms in an explosion during the war.  He makes and sells trinkets on the side of the street to provide for his family, and his only complaint is that he is unable to comb and braid his daughters’ hair before school each morning.  

Potential Areas of Need:

We have met with several INGOs, NGOS, and rehabilitation hospitals doing great work in Sri Lanka for the disabled community. These include Doctors without Borders, Handicap International, Motivation, Family Rehabilitation Center, and Arnatha Illam Trust. While each provides specific services and products to those in need, there is still much work to be done in the following areas:

• Disability awareness and education for those living with disabilities, their families, and the general public 
• Infrastructure accommodations (roads, transportation, housing, business accessibility)
• Vocational training & marketing of goods produced by those with disabilities (e.g., competitive markets)
• Access to employment
• Addressing mental health issues, such as depression in the disabled population
• Long-term medical supplies (e.g., catheters, adapted equipment for activities for daily living, wheelchairs)
• Adapted sports and recreation