Dr Divya Parashar Head of Rehabilitation Psychology at Indian Spinal Injuries Centre narrates what helped one of her patients, who was paralyzed waist down, come out of his self-imposed exile at home to face the world in a wheelchair.
“I don’t want to be seen in a wheelchair, and you can do nothing about it,” said a very determined Deepak (name changed to protect privacy), sitting in my office. A fever had rendered him paralyzed from waist down three years ago.
Every morning, he would shift into his car which was parked inside the gate of their home and he never let any neighbors, any passersby see that he was doing that from a wheelchair.
But at the Indian Spinal Injuries Centre (ISIC) he was different. He would not dodge the look or try and hide, because every second person there was in a wheelchair. And those who were able to walk were either their friends and family, or health care professionals. He was not being judged, or ridiculed, or stared at, or bullied, or asked uncomfortable questions like “What happened? So you can’t walk at all? How long will it take for you to recover? What do you mean you are paralyzed below the waist? Oh you mean you can’t even pass urine or poop on your own? So how do you do it?” Here, he was one among many and easily mingled with the crowd.
Can you help?
He entered my office, tentatively at first, sized me up, and said, he didn’t know why he was here, but he wanted to know if I could help him. As I asked all the relevant questions in an attempt to get to know him better as a person, I realized he didn’t want to talk about the paralysis. And I let it be. I made a mental note about this hesitation and resistance and thought this may be one area we would need to work through.
He would come by every day to ISIC, and we would talk about everything he wanted to discuss at his own pace, from politics to movies, to hobbies, to answering his questions about patients and if they are able to walk ever. I knew I was getting closer to when he would start talking about his reason for being here. I learnt over our conversations that he was an avid biker and he was popular amongst his friends - the life of a gathering.
“So how is rehabilitation going for you?” I one day asked him. By then we had developed a good therapeutic relationship and I knew I could nudge him out of his comfort zone. “Oh I will walk one day. And that’s what I am focusing on.”
“So let’s talk about what else you can do while you undergo therapy.”
“Like what?”
“Like focusing on getting out of the house, getting a job or going back and studying.” I didn’t want to focus on feelings around the injury, because I wanted him to bring it up as a response to my suggestion.
And that’s when he blurted out, “I don’t want to be seen in a wheelchair.”
The floodgates had opened.
Societal stigma
The primary reasons why Deepak was living in exile at home (gathered him and other persons with disabilities), were based on factors that were related to societal attitudes, and the lack of awareness and understanding about their disability, along with the stigma, prejudices, and discrimination that existed against them; on factors that threatened their own sense of well-being, the identity they had wanted to carve for themselves before the injury struck; and the guilt, shame, and grief they felt in being a disappointment to their loved ones, be it their parents, their spouse, or their own children. How could they accept that they would be in a wheelchair for life? Shouldn’t they be trying some more to walk again so that they could bring joy to their loved ones? And so the prevailing attitude among some was - till I don’t recover, I will hide behind the four walls of the home that provides a comfort nest.
Like Deepak, there are many people with disabilities who miss out on opportunities for life, happiness, meaning and success because they are tormented by their fears, of getting hurt, of broken dreams, and of ostracism and rejection by the society that they once were a part of. And I don’t know how many of them will ever experience that freedom of being who they truly are or of tapping into the potential that lies dormant.
Related Reading: Love's Truest Path - Past Stereotypes and Disability
Enabling reintegration- Role of Family and Friends
How do we get these individuals to move towards reintegration, first with themselves, and then with the world around them? Family, friends, and the larger support network they have or have had in the past would go a long way in enabling them to walk on the path of empowerment and self- determination by considering the following:
1. Convey messages of hope: What messages are you conveying to your loved one with the disability? Emotions are contagious and people often pick up on how we are feeling. Often we let our grief over our own losses in the relationship or for the new caregiving responsibilities, or for the person with the disability taint our perceptions. What you say is very powerful, so please check if your words convey remorse, regret, resentment, hopelessness, sympathy, overprotectiveness. We can’t change what happened in that one incident that led to the disability, but you can change how they are processing it by your messages. Messages of hope, encouragement, goal setting and achievement, independence, a life worth living, of abilities rather than limitations, of strengths rather than weaknesses. Exude positive energy every step of the way because that instills confidence.
2. Foster independence and self-reliance: From being physically independent, where they engage in activities of daily living and more on their own, to being verbally independent, where they direct their caregivers what to do in light of more severe disabilities, let them be autonomous, especially in their decision making. Families often think that people with disabilities need to be protected and cared for, that they are bereft of all abilities. Please shed that notion, and let go of control however well meaning, and learn to support. Instead of telling them what to do, ask them what they would like to do. You are in this way treating them with dignity, respect, and as individuals who have choices.
3. Demonstrate proactive coping: Along with emotions and fostering independence, piggy back problem solving coping behavior. If a situation shows up, do you see it as a threat that overwhelms you, or as a challenge that you must overcome? Do you feel you are in charge of the situation when it comes to dealing with it? Is there a Plan A, B, C in place? If one fails, what is the next feasible option to pick up on?
4. Empathy will go a long way: We are all different and we have our own way of seeing the world, where the lens is often shaped by our situation, the resources available, both external and psychological, our lifestyle and upbringing, and the choices we make, and so many more individual and environmental factors. We may find ourselves failing to understand why our loved one is behaving so “irrationally” by not wanting to step out of the house. “Come on, deal with it!” is what we will tell them as a result of our judgment of them. Take a breath, step back, and try and see the world through their eyes, sense their fears, and their apprehensions, and try to understand why they are doing whatever it is they are doing. Be there with them in their space and tell them you are there, and that you would see through the situation together, as long as foundation of your relationship is based on effective communication, trust, and understanding.
5. Having a trusted, support network is essential: Bring in family, dear friends, teachers, colleagues, health care professionals, or anyone else who your loved one could relate to and would communicate with. Often reinforcements from different people may turn on a spark somewhere.
6. Move on with life: Often families restrict their activities because their loved one with the disability doesn’t want to engage in them. Be it social events, vacations, or even stepping out of the home as a family for a meal or a movie. Nudge your loved one to consider going out once, to an event that they are comfortable with. Have them process how they felt after they went out? Maybe their fears didn’t materialize the way they had thought them to. Encourage the positive aspects of their venturing out, or work through the difficulties they faced. The strength lies in being one cohesive family unit rather than this being something that the person with the disability is contending on his/her own.
Acceptance, the best solution
To transition towards successful reintegration, one must be accepting of the current reality. “Acceptance” as a word in the field of rehabilitation psychology has often been mired in controversy. “How can I accept this injury which has changed my life so drastically?” is what I have often heard from people. And I can sense their angst around this concept. I often tweak this concept to talk about accepting the current situation and working with it. Would they rather choose to live a life of misery and pain in the aftermath of the disability, or would they choose to focus on their abilities, be in charge and empowered? The moment that understanding is reached and put into action, they will let go of those shackles. That acceptance comes from their beliefs, their perceptions and appraisals of the strengths in light of the disability, of aspects about themselves which they may not even be aware of. Post traumatic growth is not a myth. People have often shown magnificent resilience, determination, and a change in world view despite their disability. An understanding and acceptance of going through good times and bad is essential, which is not linear in nature.
Post Traumatic Growth Is Not A Myth
Deepak went on to finish his undergraduate degree and joined his father’s business, which he always wanted to do. He has since then planned and attended his sister’s wedding, traveled on his own within India, and is now actively counseling people with spinal cord injuries in his spare time.
What led him to break those shackles? “I had to. I realized that a change was needed in the way I was looking at and doing things. I needed to change my attitude to help me move forward, and I realized I had a lot to offer the world rather than just focusing on what I had lost and how people would look at me.”
Dr Divya Parashar heads the Department of Rehabilitation Psychology at the Indian Spinal Injuries Centre, New Delhi. After spending about 8 years in the US, she returned to India to pursue her work in positive psychology. Her work is mainly in the field of trauma, providing support to people with spinal cord injuries.
