The Story of “P”: A 19 year-old Spinal Cord Injury Patient



Eighteen patients with amputations and
spinal cord injuries share this room



The GAF team has had a productive time in Sri Lanka.  We have visited International NonGovernmental Organizations (INGOs), local NGOs, and all three of the nation’s rehabilitation centers for physically disabled individuals. The rehab hospitals lack much of the resources available in more developed countries, but the staff are competent and incredibly caring.  In spite of the competent, well-meaning staff, because of the challenges described in our previous blogs, the disabled patients at the rehabilitation centers face bleak futures of isolation, dependency, and depression.   Below is the story of one of the patients we met.

We traveled half a day through the dry, arid countryside to tour the rehabilitation hospital and the breeze from the fan was a welcome relief from the hot July air.  We sit in the middle of a makeshift rehab facility in an open breezeway next to the nurse’s station.  On each side of the breezeway sits two large rooms that are further divided into patients’ quarters. The opposing sides are open to the outdoors and the gentle breeze. The floor is a smooth concrete slab with wooden joists that hold up the roof that is made of corrugated sheet metal and a layer of thin, high efficiency insulation. It is surprisingly comfortable given the extremely arid weather.

 “P—come over and join us” The director said with a smile as she waved the young man over to meet us. He was a 19 year old slender teenager with dark brown hair and inquisitive eyes---but  apparently very shy.  With the assistance of a nurse, he slowly pushes his heavy wheelchair over to meet us.  The director smiles brightly at him, “P sustained a spinal cord injury (SCI) in a bus accident nine months ago.  He is now medically stable.  However, he is unable to go home because his house is not accessible and his family lacks the resources to take care of him.”  P wearily looks at us as he positions his wheelchair in the semi-circle of Global Abilities representatives and rehab hospital personnel.  He sits in a three-wheeler style wheelchair donated by Motivation.  It has two 25” tires with aluminum push rims attached to the seat and one large caster wheel  in the front of the chair designed to handle rough terrain.

As we learn more about his injury,  I realize that P and I share similar injury levels.  Neither of us can move any fingers, we have limited arm and hand function, and we are both completely paralyzed below the chest level.  P reminded me so much of what I felt when I was injured 17 years ago.  I remember fearing that there was nothing worthwhile to look forward to, that there was nothing meaningful I could ever achieve, and that I would be a burden on my loved ones for the rest of my life.  I asked him what he did before he got hurt. “I was a student” he replied…. “to become a teacher.”  “Will you go back to school when you return home?”  He looked melancholy and replied that there was nothing for him to do!  P needed help with all his activities of daily living (ADLs), so he believes that he does not have the physical ability to go to school.  His hand movement is severely limited, so he does not think he can write or keep up with his schoolwork.  Even if he were personally capable of returning to school, there are no universities that are wheelchair accessible, and no employer who would hire him.  These obstacles are incredibly daunting, so I understand how P has such a pessimistic outlook on life.

I shared with him my story.  P listened attentively and asked plenty of questions.  How can I write?  How did I manage to go to school?  How do I drive?  How do I dress myself?  How do I go to the bathroom without help from others?  I showed him how I write and type on a computer, and I gave him one of the gel pens that enables me to write.  I also described how I do the other ADLs that allow me to live so independently. 

An SCI patient in a WorldMade chair
donated by Motivation

Although I have worked hard to achieve my level of self-sufficiency, I credit my environment for helping me.  I am incredibly fortunate to live in the United States!  I am blessed with buildings that are wheelchair friendly, adaptive equipment that enable me to be independent, and trained healthcare professionals and peer mentors that showed me the way.  I acknowledged that P does not have all the community supports that I do.  However, even with all the assistance available in the United States, there are still so many disabled individuals in the US who are isolated, depressed, and more dependent than they need to be.  Conversely, I know of individuals with disabilities more severe than mine and without many of the resources I enjoy who have made rich, vibrant lives for themselves.  I explained to P that we founded Global Abilities to help disabled persons like him return to being active and engaged in their communities.  There is still so much that P can achieve in life, but he has to do the vast majority of the work.  I explained that, if he put in the effort, we would help him along the way. 

P and I promised to keep in touch with each other.  I look forward to helping him grow, to helping him achieve far-reaching goals, and to helping him become integrated into his community.  I also promised P that one day, I will be incredibly proud to attend his wedding.

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

Sri Lanka: "Coming Home" for GAF Founder

"My family and I left Sri Lanka in 1983, the year that the country’s civil war officially began.  I returned twice (in 1987 & 2003) before, but those were merely tourist trips.  This time it’s different.  This visit has a purpose."

 - AJ Nanayakkara

Founder, Global Abilities Foundation

As I recovered physically and psychologically from the spinal cord injury I sustained in 1994, I often thought how fortunate I am to live in the United States.  Even though I have a severe physical disability, the adaptive equipment, peer mentors, and accessible community in the U.S. enabled me to regain an active, independent life.  But, had I suffered a disability in Sri Lanka, I would most like have been homebound.  My family would have cared for me until I died, and I most likely would never have gone to school, never attained a decent job, and never gotten married!  Unfortunately, these outcomes are the norm in the world.  In most of the world, living with a disability means a short life of inactivity, seclusion, and dependence.

When I founded the Global Abilities Foundation (GAF), my main goal was to show disabled individuals in places like Sri Lanka that they could still attain much in life.  It is my hope that our organization can help them regain an independent, active life.  But before we decide how best GAF can achieve this mission, we first needed to learn as much as we could about the disabled community that we hope to help.  Kelly and I are in Sri Lanka this month to conduct research about the state of the disabled community and to make local connections that will help with our future efforts here.  In the next few blogs, we will describe the meetings we have and what we are learning.  First, let me share some quick observations I made about the general state of things in and around the capital city (Colombo) where we are spending most of our time (click on the following links to find out more about Sri Lanka's history and travel).

Cultural Changes....

The End of the War and New Beginnings:  My last visit to Sri Lanka was in 2003.  Although there was a cease-fire at that time, the country was always only a small incident or misunderstanding away from resuming hostilities.  The government defeated the LTTE rebels in 2009, so the war is officially over.  Gone are the dozens of army and police checkpoints.  I feel that people here in general are less tense and a bit more optimistic about the future.

A Growing City State:  Immediately upon landing, we noticed that resources have been spent on developing the infrastructure of Sri Lanka.  The new airport resembles a modern U.S. or western European airport—it is well lit, air-conditioned, has moving sidewalks, and other convenient amenities.   We quickly learn of a new seaport being built on the southern coast of the country in Hambattota and something akin to a new interstate highway linking the major cities in the south.

Tech Connections:  From the most remote villages  sitting high atop the mountains to the Colombo metropolitan area – people also seem more connected.  Most people carry cell phones and, surprisingly, many tout  their Facebook status!  Technology is a way for the Sri Lankan community to stay connected with each other as well as a way to experience the world outside of their little country.

...Yet Some things Remain the Same:

Transportation:  It can take several hours to go a couple dozen kilometers.  A two lane road (without shoulders or sidewalks)  can fit two cars, a bus, a three wheeled-taxi called a trishaw, several motorcycles, pedestrians, and a stray dog or two. Traffic rules are merely suggestions written from a bygone era.  Two short blasts of the car horn may translate to ““Hey, I am going to pass you now” or  “I am coming around a corner so get out of my lane” or “Thank you.”  The most common mode of transportation? Walking.

 An Ever-growing Population:  Sri Lanka packs over 21 million people into a country the size of West Virginia.  In addition, the fearless, stray, mangy, malnourished dogs seem to outnumber the people in the country.  Limited space, jobs, and resources (e.g., electricity, water) make life difficult.  Nonetheless, Sri Lankans in general are a friendly, hospitable people.

Wheelchair Inaccessibility:  Most buildings in the capital and the vast majority in the rest of the island have steps in front and bathrooms that are inaccessible to wheelchairs.  None of trains, taxis, or buses have ramps or lifts.  Luckily, there is never a shortage of happily willing volunteers to help my wheelchair and me conquer any obstacle we face.


Our upcoming blog posts will speak more to the challenges faced by disabled individuals in Sri Lanka and describe some of the organizations serving them.

This blog was written by AJ Nanayakkara, the founder of Global Abilities and renowned disabilities rights activist and educator.