Working to work
Namaskaara Debriefers,
Anna here, writing to you again from Bangalore. My last article for the Debrief tapped into conversations on how disabled people experience and provide care.
This time I’m writing about experiences in employment. Being a disabled person requires one to constantly think outside the box, creating possibilities where there aren’t. When it comes to employment, this means making our own careers.
Finding accessible work is hard work. You have to work to understand what is accessible for you, to constantly speak up for your needs in the workplace, and set up systems of support when they’re not made available to you.
And while we’re hustling to navigate access and make ourselves employable, we're held back from joining and making valuable contributions to the workforce by notions about the ideal employee.
Speaking with disabled people in my networks, I learnt about how people are fighting their way through these challenges, and the bittersweet successes of finding work on our own terms.
The Debrief commissions articles like these with reader support. Thanks to Adrian, Anna and Women Enabled for new contributions.
Demand for more employment opportunities
As India voted this summer, unemployment was a key concern for all. Ahead of the general elections, persons with disabilities raised access to work and livelihoods as a key issue in demands and manifestoes. They received some response from political parties.
Disabled people are in an especially precarious position because of systemic inequalities in the already limited job market. Analysis of the 2011 census found that only 36% of disabled people were in work, and of a 2018 National Sample Survey found an even lower 24% participating in the labour force.
It seems like every workplace today has a diversity and inclusion mandate, and technology and banking sectors are seen as emerging employers for disabled people. But there’s far too many qualified disabled people without jobs, or working in jobs that put their wellbeing at stake.
Working to work
In my own career as a psychologist, my choices have been heavily influenced by the lack of disability inclusion. Despite the mental health field being an area that extensively works with disabled people, it leaves little room for professionals with disabilities themselves.
I have been lucky to find rewarding opportunities with spaces run by people who are disabled and neurodivergent, and therefore able to better understand me and my access needs. Being able to find accessible work has made me hopeful for others too.
But even though they’ve completed higher education, disabled people in my circle have a hard time finding work. I share openings often, based on what they tell me about their interests and accommodations they need. This is just one of the many ways we have to work to make work accessible.
Next time, next time
As much as there are organisations with initiatives to support disabled people to secure jobs, none of the people I spoke to had used them. People told me how they navigate discriminatory hiring processes and workplaces on their own, or sometimes with the support of close ones and helpful mentors. To pursue different careers, they’ve had to believe in themselves despite recruiters constantly underestimating their abilities.
Dr. Nonita Gangwani is thirty-three years old and works in the Physiology department at University College of Medical Sciences (UCMS), Delhi. She developed multiple sclerosis when she was an undergraduate student, which rapidly progressed and soon required her to use a wheelchair.
Despite this “360 degree shift in her way of life,” Nonita was quick to adapt. During her junior residency she made presentations on her phone using the tip of her nose. She eventually came across Dextroware Devices, and their head-mounted mouse, which she uses to teach students and perform other tasks.
While visiting medical colleges to give job interviews, she realised how inaccessible the hospitals were for disabled people. “In Delhi, many of the hospitals don’t even have a lift. If hospitals aren’t accessible, what can be expected from other institutions?”
But she says the barrier that “haunts” disabled doctors in the hiring process is the medical clearance. While a medical clearance is a mandatory part of recruitment that all candidates go through, disabled doctors are subjected to repeated assessments because of biases about their ability to perform their duties safely.
Despite having worked for three years prior, when Nonita applied to a large central government hospital for the post of an assistant professor, she was met with scepticism:
“Their main concern was whether I would be able to give lectures, even though I had explained to them how I use the head mouse device to teach. While other candidates had joined, I was still being directed to undergo medical processes. Everytime after receiving the reports, I would check about the medical clearance, and they would just keep postponing it and say ‘next time, next time.’”
A way to fight back
One of Nonita’s teachers during her senior residency was Dr. Satendra Singh, a senior physiologist. Satendra is also disabled and a disability rights activist who’s campaigned against discriminatory policies of the Medical Council of India. He blames societal perceptions of disability for holding people back:
“The root cause of unemployment among disabled people, especially in the medical field, is the belief that disabilities are defects. This makes them sceptical of disabled people being able to work as doctors. At the same time, there is the misguided notion that some disabled people are faking it, especially when a candidate does not fit the mainstream idea of how a disabled person appears. And so people with mental illnesses and invisible disabilities are rejected. There is also the belief that some disabled doctors are trying to avail the benefit of the disability quota reserved in government jobs.”
When Satendra came to know about Nonita’s struggles in her application, he encouraged her to speak up about it publicly. That led to Nonita recounting to the Times of India how the teaching hospital’s medical board declared her unfit to work. Ever since, she’s been advocating for fairness in recruitment:
“I never really wanted to talk about my experiences with disability before that. I’ve realised that when you speak up for yourself, you also show others that there is a way to fight back.”
Together with another colleague, Dr. Sharad, Satendra and Nonita have continued the fight by challenging “ableist language” and justification of “prevailing exclusion practises” in guidelines for candidates with disabilities from the All India Institute of Medical Sciences (AIIMS).
How intersecting identities shape access to work
People who occupy multiple marginalised identities are left to navigate the effects of compounded exclusion with battles on multiple fronts and little support. Many barriers need to be overcome just to consider having a career. Intersectional discrimination makes access to work even more complex, and although this is common in India because of the large cross-section of marginalised identities, it is often unaddressed in disability conversations.
Based in Chennai, Hala (a pseudonym) is a 26 years old trans and queer artist, who has had progressive pseudorheumatoid dysplasia (PPRD) since he was two years old. As an artist, one of Hala’s inspirations is Panteha Abareshi, a Canadian-born artist who makes installation and performance art on chronic illness and disability.
Hala’s own art is a testament to the way that he is able to connect with his body today, despite all the “access hostility with my natal family, with finding housing, and finding work.” One of the art prints he’s selling for the first time at an online marketplace reads “The future body is a disabled body”.
Hala’s now estranged conservative parents stopped sending him to school in eleventh grade. This was in preparation for an arranged marriage with one of his first cousins, a practice that is common in their extended family. Other preparations included taking prehab physiotherapy and undergoing a hip surgery so he would make a “suitable” spouse.
During this time, Hala also built friendships with other queer Muslims online, with whom he shared the unsafe conditions of living with his parents. With their help, he set up a fundraiser and made other preparations to run away from home. In 2021, he managed to escape to a domestic violence shelter for queer and trans people in Chennai, where he stayed for five months.
After moving out of the shelter, Hala tried working different roles, but was met with ableism and exploitation of his labour. While starting a design internship, Hala asked about accommodations because of the stairs at the entrance of the office, and was told that “they could carry him up.” Uncomfortable with this, Hala requested permission to work from home instead. But he was allowed to work from home only when his employer was convinced it was necessary. After a whole month of work, he did not receive any payment.
Not having a college degree has limited Hala’s opportunities as it’s a requisite in most jobs. And as an artist interested in working with different mediums, not being able to attend art school has been another barrier as it’s generally in school where artists are provided with the space and training to do this. Furthermore, while searching for accessible work, Hala has had to simultaneously look for a place to live:
“As a queer muslim disabled person, you’re left with very few options. Navigating housing has taken up so much time and left me exhausted to do work.”
The weight of disclosure
One of the main issues that disabled people with “invisible” or less identifiable illnesses contend with is if they should disclose their disability at the workplace.
Aditti – a friend with whom I share work opportunities – is twenty-four years old, lives in Bangalore, and has multiple sclerosis (MS), fibromyalgia, autism, and ADHD. Currently, she is enrolled in a Masters in Sustainability course, and is a fellow at a public policy programme. Before this, she worked part time jobs in content and advertising for two years.
Since being diagnosed with MS when she was fifteen, Aditti had concerns about how it would affect her career. She would only bring up her disabilities when she went through flare ups and had to quit work to recuperate.
“I almost never felt like I could talk about my disability when applying for work. It takes a lot of energy to explain the conditions that I’m living with and how it's going to affect the way that I work. I also don’t want them to treat me differently because of my disability.”
One-sided perspectives on working with a disability had made Aditti think that most people with autoimmune conditions don’t work. But now she’s learning about how people with various kinds of disabilities are working in different ways. And the one time she did disclose her disability during the hiring process was when she happened to know about one of the employees in the organisation having an autoimmune condition themselves:
“It made me feel like they could understand my situation and that it would take less explaining than I would usually have to do.”
Leading by example
One of the organizations working to find employment opportunities for disabled people is EnAble India. Almost half of their staff have disabilities, and they told me about the importance of understanding lived experience and how having role models who are disabled transforms expectations. Debashree, who mentors candidates, has a severe locomotor disability and shares:
“It gives them hope to see someone who also has a disability mentoring them through the process. Many times when candidates come with their parents, the parents feel more reassured to meet me too, because they realise that I know how to navigate challenges that people who are disabled often face.”
I recently reported for Queerbeat about how some disabled therapists are using access intimacy to reshape their practice. Pallavi (pseudonym), a thirty year old counselling psychologist based in Bangalore who has autism, ADHD, and endometriosis, echoes the power of disabled connections:
“If I hadn’t met other therapists like me, I would have continued to force myself to be someone I am not and pushed through all the pain and discomfort. It has been truly life changing for me, and I will never go back to trying to force myself to function in ways that I can’t. I lived the first 26 years of my life masking–now I try to be as open about all my identities as possible so that I can help others like me.”
Working on our own terms
While workspaces move at a slow pace towards disability inclusion, some disabled people are finding ways to work on their own terms. For Pallavi, and others I spoke with, this means self-employment. And for others, it means flexible working time.
After experiencing burnout at a previous workplace that championed itself as being disability and neurodivergent affirmative but made few attempts to actually accommodate her needs, Pallavi shifted to being a self-employed therapist. This has allowed her to dictate her own schedules and take on clients based on her capacity, and to pursue other initiatives.
Like Pallavi, Hala prefers working on his own terms:
“I’ve realised that working on commission doesn’t suit me. It comes with expectations of when I’ll be able to deliver work and that puts a lot of pressure, and isn’t something that I can do sustainably. I also often have a lot of brain fog which impacts how I’m able to work. I’m now focusing on making art in my own space and time, and then selling whatever I’ve made.”
Aditti also emphasised the importance of rethinking the way we look at time, and finding better options for those who can only work “part-time”:
“The capitalistic approach to work which defines work hours according to how long I am checked into the workplace, rather than how much I can work, is something that takes away from how I can contribute as a disabled and neurodivergent person. I can only work for up to four hours a day no matter how much I try and so for me, four hours is full-time.”
Working independently often means that income isn’t stable and benefits like health insurance aren’t available. As much as disabled people are able to empower themselves by taking work into their own hands, it is also painful because often there isn’t another choice. As Pallavi shares:
“There is a lot of grief that I feel because I can’t and won’t ever have the kind of opportunities that my neurotypical able bodied counterparts have, simply because existing systems are not willing to incorporate anything that will not churn out constant labour.”
Bittersweet success
Despite the hurdles, disabled people continue to work the best with what we’ve got. So many of us don’t just have to contribute to the workforce but also look after ourselves and advocate for our rights to work at the same time. We’re stretching ourselves thin just to be able to secure a livelihood. The hard-won successes of working as a disabled person are bittersweet.
Personally, I resent the need to hustle in a grind culture that glorifies labour at the cost of care. I want to see disabled talent valued, so that we can shift our energies from trying to cope with inaccessible work conditions to building a future where everyone can thrive.
Dreaming of an abundant world,
Anna
Correction: text in the section “leading by example” has been updated to reflect a preference for person-first language.
Acknowledgements
I’m delighted to have Sonaksha’s illustration complement this article!
My sincerest appreciation to Peter for inviting me to write on this topic. I’m grateful to him for providing a space that embraces crip time. As ever, his thoughtful mentoring sparked many reflections and kept me motivated.
I would like to extend my gratitude to Zara, Kate and the rest of the team at Academic Audio Transcription who have built a workspace for and by disabled people. Working with them has taught me immensely about what accessible workspaces can look like and that my needs are valid.
This story wouldn’t be possible without all the interview participants–thank you so much for making the heart of the story and allowing me to share your incredible journeys. Thank you to Shristi, Usha and Debashree from EnAble India for generously detailing their multiple projects aimed at promoting disabled employment. Wishing everyone all the very best in your future endeavours.
Finally, thank you to the dedicated readers and organisations for the continued support that help the Debrief publish stories that matter.