Factoring in disabilities

Families struggling to care for those with disabilities are experiencing heightened stress and anxiety during the lockdown

Published - May 31, 2020 12:31 am IST

Fear and anxiety about a disease can be overwhelming and cause strong emotions in adults and children. The consequences of social isolation are manifested in the mental health issues being faced by a vast majority of the population in India.

A WHO advisory warns that those who may respond more strongly to the stress of a crisis such as COVID-19 include older people, children and teens and people with mental health conditions.

Those with disabilities are at increased risk for having mental health concerns such as depression. However, there is little mention of people with intellectual and developmental disabilities or psycho-social disabilities who may be unable to comprehend the need for social isolation and distancing.

While the number of mental health professionals in India remains low and access to services minimal, the mental health concerns of the majority of carers who shoulder the burden and stress of caring remain unaddressed. Care is provided mainly, but not exclusively, by women to able-bodied and dependent adults and children in either the public or domestic spheres, and in a variety of institutional settings. The question of caregiver burden has remained unacknowledged in India, completely ignoring the physical, psychological, emotional, social and financial stresses experienced by a caregiver.

The reason for this is primarily that it is mostly women within families who bear the responsibility of care without acknowledgement of their burden in care. In case of persons with intellectual, developmental or psycho-social disabilities, care work continues throughout the day and for long periods in their lifecycle. The pandemic has brought to the fore the anxieties and stress of people with disabilities, their immediate caregivers and/or people with chronic illnesses. With little role of the state in provision for care, elderly parents are performing the role of prime caregiver, and thus are worried about both the person with disabilities and themselves falling prey to the virus.

Onus on elderly

In cities, with nuclear family being the norm, often it is only the elderly providing the bulk of care for those with disabilities in their families. The fear of contagion, of combating the disease and providing the care required, the worry about money and the ability to run to and around medical facilities foment great anxiety around stepping out of the home. The instance of an elderly father strangulating his middle-aged unemployed son with disability for his refusal to wear a mask while going out of the house bears testimony to the multifarious ways in which families, carers and disabled people are experiencing mental health issues. The physically disabled son had been going out every evening without wearing a mask, despite being repeatedly told to put it on. After repeated warnings and arguments, the old man, who surrendered at the police station, said that he lost his cool and strangulated his son to death with a cloth strap.

In the lower-income household, with a retired father and his meagre savings and a disabled unemployed son, there used to be frequent sparring, and probably the only relief was the distancing possible when the son went out to allow tempers to cool. The guarded and tenuous cohabitation they were living in was fractured by the pandemic and the restrictions that came in its wake. Being forced to remain in close proximity for a prolonged period of time can lead to higher stress levels, with the elderly father forced to acknowledge the threat to both his and his wife’s health and the son compelled to remain inside as well as dictated to by the father.

The gendered relations here are interesting as the elderly mother, usually the prime care giver, is conspicuous by her absence. While most reports neglected to refer to her, it is understood from police sources that she is herself ailing and confined to bed. The absence of the peacemaker mother or her inability to intercede in the matter, reveals the way in which elderly men are experiencing anxiety and stress, which can result in outbursts.

In such situations, the state too remains notoriously absent, absolving itself of its responsibility towards the elderly and the disabled. The state in India has never taken any proactive stance towards the provision of care for both the disabled and the elderly, reserving for both groups meagre pensions and pushing the burden of care onto families. The vulnerability of both care receivers and givers, with the dual risk of devaluation and domination, is as yet unexplored in Indian society.

Intense ties

The care-giving relationship can become more intense and stressful when it involves persons with psycho-social, intellectual and developmental disabilities. In the face of the lockdown, with people being forced to be confined within limited spaces, anxiety and restlessness exacerbate the impairing condition and leads to crisis for individuals and families. While engaging in hobbies, relaxing, staying connected through phone and social media are being offered as strategies to promote mental wellbeing, for many people with psycho-social and developmental disabilities, not being able to adhere to regular social activities can be immensely stressful during enforced social distancing and isolation. Being cramped with all family members, who themselves may be stressed over their own lives, unsettled from their daily routines and by the general uncertainty that hovers over the entire populace, people with psycho-social and intellectual disabilities are often unable to voice their anxiety, which can find expression in aggressive behaviour.

The plight of a postgraduate student who had to leave home due to violence during lockdown is illustrative of the stress, aggression and violence that has resulted due to both proximity within homes and lack of everyday engagement. The young female student was distressed enough to write to the State Women’s Commission about the physical abuse by her father and brother who has a disorder and has shown signs of extreme impatience during this period of prolonged confinement at home. In her complaint, she said that after an argument with her brother, he tried to push her and thus she appealed for a "safe residence". This brings to the fore a novel scenario, hitherto not reported explicitly in India, of the abusive person with disability in contrast to the ever-dependent disabled person. Disabled people can be both vulnerable and aggressive and specifically people with cognitive impairments, because of the issues around expressing their difficulty, concerns and anxiety, may communicate through violence. There have been reports of many parents turning to professionals about the unusual behavioural patterns among their disabled offspring amid the lockdown. The student, now moved to a safer space, and her family are locked in a bitter struggle that lays bare not only the present instance of aggression and violence, but also the entrenched patriarchal discourse, that projects the disabled son in need of care and protection against the able outward moving daughter. Such discourses shames and silences experiences of violence and often leaves us unequipped to respond to abuse.

No support network

What is also being revealed through these cases is the complete absence of familial and community support networks, which could provide respite and succour to members of families burdened with care. While the post-colonial society has led to loosening of familial bonds, which in the past would be the support system for most persons with disabilities, urbanisation has resulted in the fragmenting of community solidarity, where neighbours and larger community provided both respite and a security net for families with disabled people to be cared for. With the gendered nature of care destabilised in urban set-ups, disability, aggression and violence unsettle the dominant patriarchal ideologies, with fathers reeling under the burden of care and sisters reluctant to be pushed into role of carers who voluntarily sacrifice their lives and bear the brunt of violence. The relations which used to be the safety net for families with disabled members, have sought to be replaced by the idea of paid carers, which is affordable and accessible to only certain families. Most of the families of disabled people, who border on poverty, remain mired in conflicting issues of care, violence, and disability – issues which are concealed from the dominant discourses in society.

The author is an Assistant Professor at the Institute of Development Studies, Kolkata


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