Caring for the disabled

Rajesh Bhola

All humans face challenges; people with disabilities face different challenges. For able-bodied people, most tasks are effortless; the same task for a disabled person is perhaps impossible. Eating with our own hands, walking, playing or reaching out to take something down from a cupboard is just part of our daily living. Who does this for the disabled? Things that most people take for granted are very hard and sometimes impossible for them.
Everyday I meet people who have disabilities - ranging from mild autism to extreme immobility due to cerebral palsy. My conversation begins with the topic of social and personal attitudes towards the infirm and gradually the shared embarrassment eases as we come to understand each other better. Initially it was hard to understand what these children were saying.

I felt too awkward, reflecting the embarrassment that I felt in having to ask them to repeat something. I tried hard to follow what they were saying, but I was sure that I had only got a small part of it. Gradually I have learnt to understand them and communicate with them – with the heart. Rather, I have realized that the transfigured disabled person knows the variety of human conditions and thus has an opening into other worlds. In its transfigured state, the broken body learns to be beyond desire and fear.

The world we know is the world as projected by our bodies and the body and mind can by no means be separated. It is distressing to see young children who are disabled. They feel pain and inconvenience. I sit with them and try to understand their minds. Many spastic children have a deep sense that they should not have had to face this disability; being ‘different’ causes them great unease. But they feel ashamed to ask for help. Many of them sit alone soberly for hours, hooked to a toy, a calculator or television.
The disabled are caught up in a multitude of social and cultural contradictions: between individuality and an objectified isolation; between medicine and the law; between sainthood and stigma; between being stared at yet ignored; between being labelled “special” as well as “deviant”; between presumed privilege and disenfranchisement; between being too public yet too personal; and between the discourses of rights and reasons.
We are unable to provide a larger or richer social support for people with disabilities. The lack of will on part of the families and the government, to arrange for medicines, education, and employment, would continue to wear down the disabled. In fact, the families and the society think that the problem of disability can be eliminated by removing the disabled from sight, from social spaces. They are wedged between schools and hospitals for the better part of their life – between being either pupils or patients.
I have never forgotten the moments I used to spend with a child known as Sonu. He would throw a ball, but could not pick it up off the floor. At this point we both used to smile. We both knew how difficult it was to accept disability, and how the embarrassment of the condition was harder to cope with than the problems of the condition itself.

Sonu was abandoned one morning by his parents. The child was a spastic and could not speak, could not express anything. His parents never came back – and he was left all alone. However, even in his aloneness we found him in communion with all of us. He was rehabilitated in a shelter home. We lost him two years ago. I was greatly pained – and wrote his obituary:

Sonu, 18, left for his heavenly abode at 3 am on Thursday, 20th June, 2018. His parents do not know that the journey of their young child is over. Throughout his journey Sonu could not get a birth certificate Dropped by parents one morning alongside the road, to his fate It was an effort in Civil Hospital to get him a disability certificate He has gone for a deep sleep I woke up Dr. Arora in the wee hours of the morning to at least get Sonu a timely death certificate His afflictions are over; at least let him go for a quiet sleep I weep, I wail. The tears don’t stop He has gone for a deep sleep Sonu, you woke me up forever I will always remember you Till my turn comes... to go to sleep.

Social arrangements also shape what is considered a disability. A lack of social support encourages the perception that people with severe disabilities are burdens, incapable of having rewarding relationships. Resultantly, many such disabled persons live and die unnoticed – like Sonu.

Another young teenager, who is spastic, confides in me that “Uncle, I try to do things that most others do, but my body does not obey my orders.” Is it his fault? Will we as a society just continue to perceive such persons as ‘burdens’? Disability has been around for a long time, but is conspicuously absent in the history books we read. The history of disabled people is the history of being visually conspicuous, while being politically and socially absent – erased from all records and memory. Recovering disability’s lost or untold history is important, to illuminate some of the darker corners of our past. We will start seeing disability in a whole new light when we realise and visualise what we could be, if our grandpa had been blind or disfigured.
A spirituality of disability not only pluralizes the human world, it extends it. It leaves a message for the able-bodied, that while they come to celebrate in this world, the disabled remain confined in the cages of their own bodies. For the disabled, spirituality lies not just in tolerating the pain of the disease, but also the pain of embarrassment – which they can feel in a very physical way.
Compassion is our natural response, our original nature, arising from our sense of fundamental connectedness and commiseration with all else. That is also the heart and soul of social work. Transpersonal awareness inspires a sense of mutual responsibility. Individual well being is then not separable from collective well being. Individual fulfillment must ultimately be linked with social justice on a global scale. We need a shift of consciousness. We need people in society to extend a hand to those who need help. We cannot live an isolated life; we are indissolubly linked to the fates of one another, and the world around us. We all need to be committed to a new view, a non-alienating approach towards the disabled.
Let the disabled complete their journey on this planet in a barrier-free environment, and let us help them come to terms with their personal conditions and emotions, by including them in the social mainstream. We need to remember that kindness in words creates confidence; kindness in thinking creates profoundness and kindness in giving creates love.

True spiritual experience and enlightenment can be attained by being outwardly – by visiting, talking to and meeting the people with disabilities; the abandoned handicapped children. Experience how they lead their lives with great hardship; the constraints they embrace everyday. Initially these will be only simple human experiences. Gradually, they will give you visionary glimpses – some enlightenment.

Someone asked Mother Teresa how she could tolerate working with lepers, disabled, destitute and the dying in seemingly insufferable conditions, without complaint. She said that this was no problem as she saw Christ in each one’s eyes. Mahayana applies this ideal through Kwan Yin, the most venerated goddess of mercy and compassion - the one who perceives the sounds of the world and is depicted as having a thousand eyes – in order to see the suffering of all beings, or a thousand hands - in order to reach out to help all beings, or eleven heads - depicting the myriad responses of compassion.

True spiritual experience and enlightenment can be attained by being outwardly – by visiting, talking to and meeting the people with disabilities; the abandoned handicapped children. Experience how they lead their lives with great hardship; the constraints they embrace everyday. Initially these will be only simple human experiences.
Gradually, they will give you visionary glimpses – some enlightenment. You will start listening to the cry in their hearts, and feel that how their cry expresses a deep truth; how their life grows out of their struggle. You will tune into their world. You will imagine yourself being just the same as them. The deeper you empathise, the more positive will be your reaction. Let us experience this outer bliss, stay blessed by helping them, and enjoy the resultant peace in our heart. Let us create sensitive lives that are awake to this collective responsibility.