As part of the ongoing series examining the place of friendships within the law, I interviewed Shampa Sengupta, a noted gender and disability rights activist based in Kolkata. She is the Director of Sruti Disability Rights Centre, Kolkata. We met on a warm afternoon on April 5, 2023 to have a chat about the role friends play in the care and support of persons with disabilities, the role of law, and what a right to community living could mean for persons with disabilities. As Shampa pointed out, the popular saying “It takes a village to bring up a child” has particular resonance in the lives of persons with disabilities. Yet, for most persons with disabilities, the right to community living remains aspirational.
An introduction to this series of articles, and the first article in the series can be read here in the March 2023 issue of Varta.
If the theme of friendship and law resonates with you and you want to share your experiences of friendship, and if you want to be interviewed or if you just want to share your thoughts, please reach out to me at email@example.com.
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Hi Shampa! So lovely to meet you and thank you for agreeing to do this interview. Could you begin by introducing yourself briefly?
Hi, I’ve been working on disability and gender rights issues for close to three decades. A lot of my work involves working with State bodies, governments (national, state and regional) to develop better laws and policies for persons with disabilities, and of course, implementing these at the grassroot level.
Perfect. So, the project I’m doing tries to map out the ways friendships play a supportive role in our life – often even more than our natal families. Yet, many of these friendships are invisible in law and policy. This also seems to be true of disability. In this context, I wanted to begin by asking who tend to be the carers of persons with disabilities?
Mostly it tends to be the mothers. I wouldn’t even say natal family, because the burden of caregiving falls disproportionately on the mother. Fathers don’t play as much of a role in caregiving as mothers do. The burden definitely falls on the mother. Often, there’s also a guilt element to this. The mother’s blamed by the family and even society for the child’s disability. She’s made to feel responsible for the child and this is used to justify a greater burden of caregiving that she has to bear.
Of course, if you come from an affluent family, you can hire paid caregivers; not just paid caregivers but a whole host of professionals who can help children with disabilities. This includes special educators, psychiatrists, speech therapists, sometimes even fulltime caregivers who escort the child or person with a disability everywhere.
It’s interesting that you didn’t mention spouse at all.
That’s because I don’t see spouses playing that much of a role in day-to-day caregiving. Firstly, because marriage for persons with disabilities is a rare occurrence. If you’re a disabled woman, chances are that if you manage to find a husband at all, it’ll usually be someone with a higher degree of disability than you. If you’re a disabled man, you may still have some luck with finding a spouse who isn’t disabled herself. In such rare instances, the spouse may become the caregiver. I guess in a lot of cases of psychosocial disabilities, the spouse may play more of a role in caregiving, but for physiological or intellectual disabilities, it’s rare. Even so, the role of the mother as the primary caregiver remains relatively unchanged throughout life.
Hmm, I see. The reason I’m asking this is because the Rights of Persons with Disabilities Act, 2016 (RPWD Act) says that anyone can be a carer. The person doesn’t have to be biologically related or even be a spouse. But based on your experience, a carer is mostly the mother and / or paid caregivers?
Yes, primarily. Of course, it also depends on the nature of disability and the degree of support needed by the person. Many with visual or hearing disabilities are able to live a relatively independent life with minimal support. On the other hand, those with intellectual, cognitive disabilities need a lot more support and usually for their whole life.
What role have you seen friends play in the lives of persons with disabilities? Do they ever perform a caregiving function?
I think that depends on how you define caregiving. Often, when we talk about caregiving, it refers to support for day-to-day functioning. Things like getting ready, using the washroom, eating meals, etc. In these activities, friends usually don’t play a role. However, if we’re talking about a wider network of support, friends have a huge role to play. For instance, I know some children with disabilities who went to mainstream schools. There they received a lot of support from their friends. Mainstream schools are so exclusionary and it’s hard to manage on your own. That’s where non-disabled persons as friends can step in and help. Unfortunately, though, most disabled persons can’t go to mainstream schools and have to go to special schools. Such schools are useful, but it still does end up being a secluded environment.
What sort of support have friends offered specifically?
Wheeling someone with a disability around the school campus, taking notes for them, helping them with homework and studies, just being around in general. Going out for movies, other recreational activities, things like that. Things that are not necessities in the strictest sense but are important nonetheless. So, it was support not just in the school environment but also outside it.
Have you noticed any awkwardness among persons with disabilities in asking for help from friends?
Not really. In a school environment, you spend so much time growing up with children your own age. So, the awkwardness is less I suppose. I assume in a workplace it would be different.
Do you feel that support of such nature ought to be recognized as ‘care’ within policy and legal frameworks, or is it useful to maintain a conceptual distinction between a caregiver and someone like a friend who helps occasionally?
It’s hard to say because disability is such a range of issues. Someone with physical disability may need a particular form of care which may be helpful with navigating their physical environments. But a person with an intellectual disability may need a totally different kind of support; even a more extensive network of support. So, it’s probably best to decide on a case-to-case basis.
What barriers do you think friends face when trying to play a caregiving role in the life of a person with a disability?
Hmm. I can’t really think of anything as such. I guess you might face some pushback from your own family. They’ll probably think it’s a waste of time and discourage you from spending too much time with a person with a disability or get too embedded in their lives; probably because a person with a disability is not seen as a productive member of society.
What about workplaces? For instance, if you are a friend of someone with a disability and you have to take time off from work to care for them if no one else is available. Do workplaces (private or government) accommodate that?
In other countries like the UK, there is the Care Act, 2014. Under this law, carers have some rights, including being allowed to take time off from work to take care of a person with a disability. They get financial assistance too. It’s part of the framework of reasonable accommodation. In India, we don’t have a law addressing the need of carers. So, it’s left to each individual state what policy or scheme they adopt. In Kerala, for instance, there’s a scheme that allows a person to work lesser hours in case they have a child with disabilities, but this is only where the mother is the primary caregiver. Apart from this, parents working in government jobs may request postings in big cities where they can ensure that their child gets the necessary medical support. At times, even this is denied. There was a recent case where a working mother died by suicide because the government didn’t accept her request to be transferred to Kolkata so that she could ensure better care for her autistic child.
That’s awful. It’s surprising that there’s nothing much in the RPWD Act?
Unfortunately, there was so much opposition when we tried to introduce any sort of framework for carers in the RPWD Act – not just from the government but even from within the disability rights movement itself. Many felt that bringing carers and their rights into focus would dilute the contents of the Act. The RPWD Act does talk about a caregiver’s allowance, but again, it depends on what individual schemes each state government comes up with. Even now, parents still take on the major role of caregiving. There’s still so much burden on the families. The government doesn’t take much responsibility. It’s either the family or institutionalization.
Yes, precisely! Which is why wouldn’t creating the space for a wider understanding of care and support networks enable more people, especially non-natal kin to participate more meaningfully in the life of persons with disabilities?
Yes, of course. Parents often worry about who’s going to look after their children after they are gone. How would support be sustainable? This is why many parent support networks like Parivaar are trying to start group homes where families can stay. This is different from institutionalization. The idea is that even if the parents or family members die, others within the group home can step in and look after a person with a disability. Again, the problem is the accessibility of these services. It’s mostly affordable for and catered to middle class and upper-middle class families. So, a law clarifying and building on the rights of carers and providing infrastructure for their legal, social, and economic assistance would be very useful.
There is also the National Trust Act, 1999. This Act is mainly meant for persons suffering from mental retardation, autism, cerebral palsy, or other multiple disabilities. It’s used for appointing guardians for persons with disabilities after they turn 18, if they have an intellectual disability and cannot take decisions on their own. As a parent or relative, you can apply under the National Trust Act to become a guardian once your child or relative with disability turns 18. The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities also runs schemes for persons with disabilities. They give grants to NGOs for running residential homes, buying necessary assistive devices and so on. So, parents can get some help from the National Trust too.
Can only parents or blood relatives apply as guardians under the National Trust Act? Is it open to others as well based on the nature of care / support they fulfil in the life of someone with a disability?
No, even registered organizations or NGOs can act as guardians. I know of a case where an NGO became the guardian for two persons with intellectual disabilities after the death of their parents. But yes, apart from a parent, relative or registered organization, no one else can become a legal guardian.
I noticed that the RPWD Act has a ‘right to community living’ feature. When I read that, it really piqued my interest, maybe because it signals the less talked about need for improving the quality of support structures available to persons with disabilities within their local communities. Could you elaborate on that? Why was this added into the law and what does it entail?
Often, there’s a tendency to abandon a disabled child or institutionalize them. This is especially true for those with cognitive impairments. These institutions are secluded spaces and therefore the residents don’t have much contact with mainstream society. To prevent that, the government introduced a right to community living in the RPWD Act in 2016, which says that persons with disabilities have a right to live in their local communities and families and not be sent off to an institution against their will.
Right, but community living isn’t defined anywhere in the law. What sort of State obligations does it give rise to in your opinion?
There are so many things! Everything when you think about it, but at the very least, you need accessible infrastructure. How does one get from one part of the city to another? What community living are we talking about if there’s no accessible transport infrastructure and urban spaces? That itself is challenging. Additionally, you must create inclusive educational environments and workplaces. This requires not just upgrades and rethinking in terms of equipment and built environments, but also attitudinal changes. So much sensitization is needed. Persons with disabilities also need access to leisure and recreational opportunities. Families often tell me that it’s been so many years since they stepped out anywhere or did anything to relax. This really affects the mental health of the family. So, you really need a lot of things to work if community living is going to be a reality.
Just some days ago, I got a call from a woman whose husband died recently. She worked as a house help and had to look after her disabled son. It was proving extremely difficult for her to manage her work and look after her son without any support, and yet, she couldn’t afford a paid caregiver. The point is where would such a person go? They’d have to approach shelter homes, group homes or other institutions, right? What community living can we realize in such a scenario?
They say it takes a village to bring up a child. That’s even more true in the case of a child with a disability. Often, it takes just simple attitudinal shifts and understanding. I had a friend who had two children with intellectual disabilities. When I was getting married, I invited her to our wedding. I remember she hesitatingly asked me if she could bring her children to my wedding. She looked apologetic and told me that the reason she was asking was because many people usually advised her not to bring her children to social gatherings since they could be a nuisance. Things like this really marginalize those with disabilities from participating in mainstream life. These attitudinal barriers need to be broken down.
The interview has been condensed for clarity – Editor.
Main photo courtesy: Shampa Sengupta