It is widely believed that people with disability (PwD) face greater challenges during a pandemic. According to the World Health Organization (WHO), disabled people are at a greater risk of catching Covid-19 due to the multiple barriers including inability to engage in basic hygiene like washing hands thoroughly, difficulty in social distancing especially if they are in a care facility, and the common need for physical touch to access their environment. WHO also urged governments to take proactive steps for people with disabilities. There are certain populations of people with Down’s Syndrome, who are more likely to have heart defects and cardiac problems and consequently at greater risk.
Further people with intellectual disabilities were substantially more likely to experience loneliness in a pre-Covid world than the general population. And this is likely to further worsen in a lock-down situation, which has been enforced in many parts of the world. If family members are affected by the virus and quarantined and no other caregiver is available, this could lead to tragic consequences like the Chinese teenager with cerebral palsy who died after he did not have access to food, drink or personal hygiene for a week. The mental health of caregivers is also a matter of concern as they need additional support.
The Indian Ministry of Social Justice and Empowerment issued guidelines to the states and Union Territories for protection and safety of people with disabilities. These guidelines focused on providing access to the required precautions and essential services. But the ground reality was quite different especially for people who need external support for their everyday activities. Virali Modi tweeted the following message:
“I’m disabled and I live alone, I need my maid who cooks and does other physiological care for me. Due to the virus, she won’t be able to come. What do we do about these situations?”
Sometimes the guidelines issued by government bodies were confusing and incomprehensible for people with intellectual disabilities that they did not go out for groceries or essentials.
When Ravi Kaushal, a special educator for an NGO dedicated to pre-vocational and vocational training of adults with IDs in Jalandhar, had a video-chat with his student Luv during the lock-down, Luv’s sister, Ravneet was amazed to see the intense concentration in Luv’s eyes as he saw and heard his teacher on the phone. He had never paid any attention to the phone previously and this starkly different behaviour astounded his family. He reached out to touch the phone a few times and folded his hands in greetings multiple times.
Other special educators at this same NGO were asked to maintain weekly interactions with their students. Here are some of their notes from their interactions:
“Hardeep’s father said that his routine is spoilt now. He has reverted to his earlier behaviour of not chewing his food thoroughly and spilling food all over himself.”
“Rohan’s caregiver at home said that Rohan goes to sleep right after his breakfast and sleeps a lot during the day.”
“Most students are getting bored because they have no outing. Some of them help with household chores but after the lockdown, they will have to be trained again.”
Ephilia’s home and neighbourhood in Santa Cruz, Mumbai was usually abuzz with a lot of social activity throughout the week before the lockdown. She loves watching the passing trains and looks forward to interacting with visitors to her home as well as her neighbours. However, the sudden lockdown upset her significantly.
“Suddenly, everything stopped. And she was in a state of shock”, says her mother, Fatima D’Souza. “Cookie [Ephilia’s nickname] cannot speak and she started expressing [herself] by screaming and yelling from the window, so loudly she was screaming that my friend from four buildings away called to inquire. I told her that she has not accepted this sudden change. She is not seeing anybody. Only birds are flying around. No human beings. So, I kept singing while cooking so she has some entertainment.” Eventually, Ephilia calmed down after her mother prayed. “But the first few days were very bad for her. I had no control over the shouting.”
Sahil, who is on the autism spectrum, felt uncomfortable with the sudden change in his daily routine of going to the sheltered workshop, according to his mother, Alka Baghdadi. Initially, he missed his work routine as well as his daily evening visits to the nearby tea stall. He would continue to visit the tea stall with his father for 4-5 days even though it was closed. Eventually he adapted to the new routine. The vocational centre’s staff members call Sahil every day which reassures him.
Similarly, Girish misses his bi-weekly music lessons, grocery shopping, and the social get-togethers. His sister and primary caregiver, Rekha Balgi, who is a special educator herself, has a planned schedule for him at home. He asks about his classmates from the music class and has spoken to his teacher a few times. Rekha is cautious about following all rules for disinfection of items before taking them inside their home as they are the only members in the household and does not want to be in a position where they have to seek medical help.
People with intellectual disabilities often have co-existing mental health problems including anxiety. Structure and routines can reduce anxiety for people with IDs, but this was disrupted with the lockdown. Now people with IDs are also getting used to this new routine with some difficulty. The need of the hour is to support the caregivers of people and their educators when they get back to their older routine, which may also change significantly in post-Covid times.
About the Author and Serein
Naureen Bhullar got her PhD in Psychology from Virginia Tech and taught at Widener University in Chester, PA where she was tenured. She did her post-doctoral work with social psychologist, Ramadhar Singh at Indian Institute of Management Bangalore (IIMB). She is currently engaged in research across different topics including emotion and emotional contagion, meaning in life, mindfulness, autism in adolescents and adults, women in STEM, and diversity and inclusion. She has published her research in different journals, including Psychological Studies, IIMB Management Review, Psychologia, Personal Relationships, Advances in Autism, Current Psychology and more. She is a reviewer of articles published in Journal of Humanistic Psychology, Psychological Reports, North American Journal of Psychology, and Advances in Autism. She is also engaged in research with Serein, which includes writing the yearly handbook, assessment of training sessions, and co-creating activities for different workshops on biases and sexual harassment.
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