Considered a backup

Editor's note: join me in welcoming new contributor Anna Maria to the Debrief. In this piece she takes forward our discussions of how we look after each other. – Peter

Namaste Debriefers,

I’m Anna (she/they) writing to you from Bengaluru, India. I’m a disabled and autistic psychologist, exploring public health, queerness and the climate crisis. 

Earlier this year, my mum was diagnosed with cancer and I took on significantly more care responsibilities. I found myself thinking about how hard it is to navigate care with a disability and reflected on the notions we have about people involved in care.

It's easy to assume that the person receiving care is disabled, and the one providing it isn't. But many times disabled and chronically ill people use their knowledge to support others. So I connected with other disabled people to hear about their journeys and the questions that our experiences raise.

How do we provide care when we’re often so dependent on it? Can we care for others sustainably without receiving the care we need ourselves? And why does the world allow care to become so burdensome?

The narratives that people shared about their care journeys reaffirmed my ideas about how we are active and innovative providers of care, despite being constantly undermined for our capacities. And it showed me the efforts disabled friends are making to rethink care and to create communities of interdependence and solidarity. 

All of us engage in care

All of us engage in care in some ways or the other. As the eldest daughter in an Indian family, I’ve helped look after my siblings, played peacemaker during clashes, and been a listening ear. As a woman, I’m lucky to have “ride or die” female friendships, where we protect and tend to each other.

When it comes to care as a community, I’ve experienced it the strongest at Revival Disability India, an online queer collective that's been mentioned in the Debrief before. We rant about ableist Yoga Day posts, initiate conversations about disabled intimacy and pleasure, help each other find medicines and wheelchair friendly restaurants, and rally together when any one of us has been discriminated against. Through the Revival network I connected with folk to think through questions of care and how it fits in our lives.

Considered a backup

One of the close friends I've met through Revival is Fiyags (a pseudonym) – a twenty-five years old Computer Science graduate also living in Bengaluru. The city is known for its excellent hiring prospects and should hold great promise for their professional journey. But it's been three years since they’ve been applying for jobs and they're still unemployed. Fiyags is hard of hearing, and has faced all sorts of hurdles in the hiring process, including being told that they weren’t offered a position because the company “could hire only one disabled person”. 

Fiyags has been disregarded because of their disability in other areas of their life as well. When I shared my own frustration and exhaustion running around government hospitals – which never have enough chairs – they opened up about their own mother’s cancer diagnosis. They’re often the last person that their family gives responsibilities to, because of their hearing and neurodivergence. This used to leave them feeling so dejected that they would cry about it whenever they stepped into the shower. 

One of the ways that Fiyags has responded to this pain and exclusion is reflecting on how care can be approached differently:

“Yes, I do still wish they would let me look after them. However, the concept of care has expanded for me and I realise that I’m able to provide care in ways that my sibling cannot–I know how to cook and they don’t. I’m slowly becoming okay with being considered a backup to a more able-bodied person in some situations and I understand that I have certain limitations.” 

Fiyags's reflections show the emotional labour disabled people have to do to adjust how they engage with care, and find their own ways of looking after people. For Fiyags, this includes providing presence and acts of service: 

“I love caring for the people in my life, and I always try my best to. I like that my Ammuji [mother] doesn't have to do any household chores after coming back from office because of me. That there's warm rasam already prepared for her.”

Care cuts both ways

The tensions around care that Fiyags expresses aren't unique to their story. In her paper on  disability and care in urban India, Renu Adlakka calls care an “ambivalent concept”: 

“On the one hand, care signals love, affection, and trust, while on the other, it often leads to burden, overwork, hardship, and even humiliation for both the giver and the recipient of care.” 

When it comes to personal care, Fiyags often forgets to look after themselves, particularly when they are taking care of someone else. While it continues to feel uncomfortable, they have started being able to better manage their feelings of guilt around self-care. They tell me that they feel cared for when they are heard out and comforted during times of distress. And they’re grateful to receive this from close ones, and other members of Revival. 

Responsibilities placed on women

Historically, care work has been feminised, whether it's house-work, paid domestic work, nursing, school teaching, or mental health. Around the world, it's women and girls that provide unpaid care work. And in India, a time-use survey found women in urban and rural areas spending 46% of their waking hours on unpaid care work, about eight times the number of hours spent by men.

As women, we can often feel this social pressure as guilt. Vandita, the founder of One Future Collective – also a community care space – is twenty-eight years old and disabled, and has been a primary caregiver to a family member. She tells me about her journey with care:

“I struggle to ask for care and receive care, because I've always thought of myself as the one that needs to extend care. The stereotype of the elder daughter syndrome is very true, and I've had to play the role of a caregiver since I was sixteen. Care seemed like a natural responsibility for me to the world that I had to fulfil. Not doing it even for a day made me feel immense guilt and made me feel like I'm failing in whatever my role is in this social system.” 

When it comes to disability, it’s majorly the mother who is involved in tending to the needs of her disabled child. And who is often blamed as a cause for the disability. Across the joint-nuclear, rural-urban divides, it is the daughters or daughters-in-law who become primary care providers of those who are disabled. Disabled women have to show an even higher level of impairment than disabled men, to be excluded from domestic chores and reproductive work. 

It takes one to know one

The people I spoke to told me not just about the emotional labour they had to do themselves, but how they experience it as a form of care when their own needs are understood. In the US, disability rights activist and writer Mia Mingus coined the term “access intimacy” to describe the deep sense of connection and ease when individuals share an understanding of their access needs. 

Vandita describes feeling cared for when someone has an “inherent knowledge” of how to care for her, like how to look after her when she’s on her periods and having a pain flare up. For Fiyags care also includes an understanding of their neurodivergence. When they're feeling triggered, they want to be allowed to feel and express their emotions, but also to be told to control them if they’re reacting in ways that might not be welcome or safe in certain social spaces.

Rahul is a 26 year old laptop repair technician from Kerala, caring long-term for several disabled people in his family. Perhaps because of this experience, he's also found interest in working with social work organisations and repairing wheelchairs and appliances in government hospitals. He sees caring about providing people with a safe and accessible environment:

“When providing care, one should ensure the comfort and independence of the disabled person, and value their dignity and individuality. Good listening skills and patience goes a long way.”

Barriers to getting the care we need

When it comes to Rahul’s own access to care, it’s been tough. He received an initial diagnosis of ADHD in primary school but it was only recently he was able to access further professional help. As an adult, he’s struggled with planning and has had to switch jobs every three to four months:

“There's no routine for me. I struggle even to brush my teeth every day. I don't have access to a lot of resources for ADHD care.” 

He finds it very difficult to explain things to his parents, because of the many misconceptions around ADHD in Indian society, even from professionals. One psychologist told him that ADHD is only a childhood issue and that one grows out of it. A homoeopathy doctor reassured him that the condition is completely treatable. And when Rahul approached a neurologist he “wouldn’t give him even one minute of his time.” 

Rahul's hurdles in seeking treatment show how people with less visible disabilities are often disregarded by the healthcare system. In my own case I had thought that the big step was reaching the hospital, and that this would set the process for my treatment in motion – I was so wrong. 

Much of my final year in undergrad was spent at the psychiatrist’s office, crusading for an OCD diagnosis. I somehow managed to use the energy I had at the time, which was already so depleted, to talk to doctors who wouldn’t listen. But I’m thankful everyday that I did, since those efforts eventually led to me being able to access medication that I very much needed. And the reading I did in the process equipped me with useful knowledge about caring for myself with OCD, which I could then also share with others. 

Strength in numbers

Although I had had my own share of experiences, it was only when I started connecting with disabled and chronically ill people online that I began to realise how much medical care is entrenched in prejudice. As much as it was painful to learn about the stories of invalidation, gaslighting, and abuse, knowing that I wasn’t alone made me feel visible. And believe that perhaps, strength can be found in numbers.

Rahul too has found solace in being able to connect in online and offline communities with neurodivergent people, including through Revival: “Revival educates the world about a lot of the problems I face.” Learning about the lived experiences of others has helped him understand his own neurodivergence and put it into words. 

Support that recognises his neurodivergence makes Rahul feel cared for. He mentions how his mother pays careful attention to light and noise around him because of his hypersensitivities, and requests others who come over to their house to do the same. A few of his friends have also helped him find a reliable psychologist to aid with a formal diagnosis. 

Revival is a space where so many disabled people, in Fiyags's words, “find friendships and belongingness”. I reached out to Nu, Revival's founder, to know their experience of organising. They reflected on how it taught them about care: 

“Revival came about as a space for the articulation of my own identity and self–as a way to survive. I only understood the value of care much later, two years into Revival. I sometimes don't fully realise the impact this space has on so many people. It is the people who have created Revival. Each person who joins it gives it shape and makes it a space of interdependence and solidarity.”

Being led by values

Correction: the original article said that Vikki was from India, but this is not the case.

Care isn't just within a family or a community. It's also provided within care facilities. Another Revival member I connected with was Vikki, who is thirty-two years old, British, and studying social work and working as a carer in a residential children's home.

Even though the UK went through a period of closing down institutions for disabled people, it still uses residential facilities for people with high support needs. Vikki tries to do this work in a “values-led” way, tailoring it to the basic needs a person requires, according to their “love-language” She has deep affection for the young people she works with, and tries to provide “the kind of support a parent would – from emotional support to cooking dinner, to waking them up for school”. 

Vikki grew up as the eldest daughter in her family, taking responsibility for her sister. While she is clear how much she appreciates being cooked a meal or getting a comforting hug from her partner, she finds it hard to receive other forms of care. “In terms of my own disability I’m fiercely independent and won’t accept help. Occasionally I’ll look into getting a prosthetic to help me do something, but when it’s not as easy as I’d like it to be, I tend to leave it.”

Time for care

Regarding resources that she wishes she had access to, Vikki mentions time:

“There is no time to achieve what I need to do and I’m always drowning under the amount of work. Social work placements are not paid, so I have to work ridiculously long hours to be able to pay my rent and feed myself.” 

Understandably, Vikki’s email correspondence for this piece has been sporadic. But then again, every step of the process for this piece has been on “crip time”. I first started talking about it with Peter, back in March, and was able to develop it without a rush for deadlines. As a disabled person who’s often “behind” in time, this patience makes me feel access intimacy. 

More sensitive ways of living

While disabled people are able to lift each other up in many ways, we cannot and should not have to rely on ourselves to ensure accessible and inclusive care. There have to be changes made in the systems we have built and how we show solidarity as a society. As Vandita says: 

“I find that a lot of us are supplementing care efforts that are not provided by the state. This pushes me to fight for gaining care rights for the people I love, so that their well-being is not dependent on me as an individual.

“Most disabled people I know have communities that are disabled and it's beautiful how much we're able to do for each other.  But we're also really tired. It would be good to see solidarity from people who are more able bodied.”

The focus needs to shift from ableist notions of “fixing” disability, to fixing our access to resources, so that everyone can live a cared-for-life. The disabled community challenges practices that are not aligned with compassionate care, and develops a vocabulary that promotes more sensitive ways of living. This knowledge should be heard and incorporated into our societies. We have to work together. After all, disabled care is care for us all. 

Warmly,

Anna

Acknowledgements

The illustration of care is by Tan Kuan Aw.

I’d like to thank all of the participants that I spoke to for this piece–this would not be possible without you. Thank you so much for all of your deeply reflective and powerful voices. 

To Revival Disability India, for being home and Nu, for taking me in. 

To Peter for inviting me to write for the Disability Debrief–which is one of my favourite newsletters–and the many conversations on care which shaped the piece. 

To Áine for introducing me to Disability Debrief and being ever so supportive.

Disability Debrief is supported by the individuals and organisations that read it. This edition has support from Light for the World.