In the small town of Karakulum, I finally grasped the seriousness of the wheelchair un-friendly environment here in Kerala. It is a very rural area with most roads only made of dirt. Like much of Trivandrum, there are not sidewalks. Nothing is paved. Walkways are commonly unfriendly even to those without physical challenges, as they are horribly filled with ruts, jagged rocks, and large tree roots. Most homes are situated up on hills and have short hikes to reach the front doors.
We visited several patients in Karakulum with spinal cord injuries leading to paraplegia. The first home was only accessible by a small footbridge that took us over a stream. From there we had to climb a dirt and rock hill to get to a small home with three steps leading into the front door. The home was dark with little view of the outside. This patient was a paraplegic after he had been a laborer and had a bad fall from a roof. The man cannot work and his wife now lives elsewhere so that she can work, as employment opportunities seem harder to find in Karakulum. She visits him monthly. His care is provided by his parents, but both work during the day, so he is alone from morning until they return home from work.
I noticed a wheelchair in the room and asked if he used it. He said sometimes he uses it, but it takes two people to get him into it, so that cannot happen everyday. I thought of the stairs leading into the home and the dangerous hill immediately below the stairs. If he could somehow make it out of his home, there were still no sidewalks or paved streets. The small footbridge we crossed to get to the neighborhood would be impossible to cross even if there wasn’t a steep, unlevel and unpaved hill to get down first. Just the environment itself is life-limiting. I couldn’t help but think of how hard it must be to know that fresh air is only a few yards away, but to be unable to get to it. With his family working all day and not being able to simply get outside to wave at neighbors, I could only imagine the loneliness that must go along with this life he leads, all while wearing a smile.
As we thanked him for allowing us into his home, he pointed to the wall. He wanted to show us a family photo. At this point I realized this man has a daughter. He was so proud of her and was excited for us to see the photo. I was heartbroken by the realization that he probably doesn’t see her often and that it is impossible for him to leave his home to visit the daughter he clearly loves so very much.
Our third visit required a bumpy drive down a dirt road through banana trees and a quarter mile hike through a forest up a steep, rocky hill covered in slippery leaves and complicated further by large tree roots that came up to my knees. The doctor made sure to put on her own knee brace before making the climb, as injury for any of us was not out of the realm of possibility. We climbed two steps to enter this home to visit a paraplegic man who had fallen out of a tree while working. This man was able to get himself from his bed to his wheelchair and back, but his chair could not make it down the steps to reach his yard. Beyond the steps was a small, four-foot dirt yard and then a steep downward slope into a tangle of trees and brush.
There would be nowhere for him to take that wheelchair if he were able to get down the steps. To reach the nearest area that a car could be parked to take him anywhere, he would need to be carried down the treacherous hill we had climbed. Even attempting to make it there independently would be death itself. Again, his parents lived there with him, but they both work all day, and this man does not have any company. I was so sad for him that his environment makes it impossible to even visit a neighbor to enjoy a conversation. Being paralyzed should not mean you have to be lonely, but in this place, that is a harsh reality.
I am saddened to realize how much more of a life these patients of Pallium India would each have if they simply had sidewalks and wheelchair ramps. These people deserve to feel the sun on their skin and be able to see the birds they can hear all morning from the homes they are imprisoned in, but until we create a Trivandrum that is welcoming to their differences, we are not able to offer them the lives they deserve. I can’t even begin to pretend I have a solution for this problem, but I pray we can find one.
I was suddenly struck by how proud I am to be here learning from Pallium India because they provide in-home physician visits to people who would otherwise have no other option for receiving healthcare. There is an immense need for what they do every single day. Outpatient clinic visits are not a reality for the people I met today. In this way and in many others, Pallium is truly a one of kind, special organization. The world has a lot to learn from these selfless and hardworking people.
Kendall Kikuts is a nursing student at the College of Nursing at the University of Iowa. She works as a nursing assistant on the Bone Marrow Transplant Unit at University Hospitals and Clinics.
Photos are by Gengxin Shi who is an engineering student at the University of Iowa. All photos are done with permission.