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In honour of Disability Pride Month, Equilibrio Advisory hosted a compelling LinkedIn Live panel discussion titled “The Invisible Cost and Impact of Disability.” The event was skilfully moderated by Rosanna Rodrigues, Head of Mental Health at Work at Equilibrio Advisory and a mental health professional trained in social work.
The panel featured distinguished voices including Soumita Basu, a passionate disability advocate, former journalist, and founder of the inclusive fashion brand Zyenika; Usri Basistha, an associate at Equilibrio Advisory and a queer, neurodivergent educator dedicated to nurturing inclusive workplaces; and Samriti Makkar Midha, co-founder of Equilibrio Advisory and clinical psychologist with extensive experience working at the intersection of gender, sexuality, disability, and neurodivergence.
This article delineates the ideas and experiences that emerged through their insightful conversation, that traversed the wide array of unseen challenges faced by persons with disabilities.
“A friend of mine whose son has autism, once said, ‘if you know a person with autism, you know a person with autism, you don’t know autism. You don’t understand autism. You know that one person with autism, if you know 10, then you know 10. All of them are different.”
– Soumita Basu, founder of inclusive fashion brand, Zyenika
Rosanna opened up the discussion with a need to understand, what disability really encompasses beyond the ubiquitous icon of the wheelchair, that the disabled community has become synonymous with.
Soumita spoke to how the wheelchair icon is a very limited understanding of the community. She explained how the wheelchair does not even accurately cover the range of locomotor disabilities—which can have various forms that need not affect the legs. She spoke of how the understanding of who falls under the disabled umbrella is very little. She spoke about non-apparent disabilities like chronic pain, or auditory impairment that often fly under the radar of awareness.
Adding to this, Usri pointed out how the disabled community is a spectrum. They compared it to the LGBTQIA+ community. The words in that acronym signal to allies that the queer and trans community is not homogenous. Similarly, the disabled community is made up of individuals whose experiences are as different as can be from each other.
This concept of diversity within the community, although relatively new, is captured in the Disability Pride Flag. Conceptualized by Ann Magill in 2019, the flag consists of five diagonal stripes, where each colour represents a separate spectrum of disability, e.g. green represents sensory impairments, blue represents psychiatric disabilities, etc.
Usri underlined the rich diversity inherent within the community, by spotlighting the white stripe in the flag. It stands for non-visible disabilities, a subset of which is the neurodivergence spectrum.
Further delving into the nuances of diversity in the disabled community, Usri looked at the hierarchies that have arisen out of the different group that make it up. For instance, gender is an important factor, that further complicates the experience of neurodivergence. They spoke to how there is limited media representation when it comes to neurodivergence. For instance, the popular references around autism that they grew up with were films like “Rain Man” and “My Name is Khan”, where the autistic person was male. Since, Usri found no representation of autism that looked like them, their neurodivergence remained invisible till their early 30s.
They also examined how this hierarchy also manifests in a different way. When awareness campaigns are undertaken, it mostly centres around disabilities that are somewhat more acceptable, and known in the mainstream, like physical disabilities. However, disabilities that are more complex or non-aesthetic like disfigurement or schizophrenia are still skipped over or worse still, demonized.
“My identity does not change, just because my body has”
– Soumita Basu, founder of inclusive fashion brand, Zyenika
With the diversity within the disability spectrum and the complexity that arises from said diversity, clearly established, Rosanna delved into a separate aspect of disability: the perception of the disabled community.
To illustrate her point, Soumita discussed her gradual journey from being a non-disabled to a disabled person. She spoke about how she was very physical as a child and dabbled in dance and martial arts. She recounted how the onset of disability is gradual and non-linear. How she would have days where she could use her body, and days she needed to completely rest.
She underlined how acquired disability has a transition period, where a person has to first come to terms with their own disability. Then begins the journey of exploring and navigating accessibility needs. However, she noted, “my identity does not change, just because my body has”. While this journey was on-going, she noticed a shift in people’s perception of her.
From asking her, what she planned to do in 5 years’ time prior to her disability, people began asking what she ‘can do’ post her disability. This unconscious assumption of her capabilities was further revealed through questions like, “how do you spend your time?”. There was an unconscious assumption that Soumita’s life was devoid of action and purpose, and she revealed how it was the opposite, now that she was constantly navigating her disability and feeling the need to dispel archaic stereotypes miring disabled persons.
Soumita brought in the need to humanize conversations around disability. She underlined that it is impossible for human beings to be aware of every socio-political concept or identity. She suggested that instead of boxing humans into labels or boxes, the baseline should be approaching every individual with empathy and without preconceived assumptions. She beautifully, rounded up her observations by remarking,
“A friend of mine whose son has autism, once said, ‘if you know a person with autism, you know a person with autism, you don’t know autism. You don’t understand autism. You know that one person with autism, if you know 10, then you know 10. All of them are different.”
Taking off from the differences in lived experiences within the disability spectrum, Rosanna dwelt on the self-same portrayal of the community on virtual spaces. She highlighted a social media quote by a fellow disability advocate and co-founder of Billion Strong, Puneet Singh Singhal that said:
“Praising resilience in disabled people often ignores the exhaustion behind it. Strength is admirable, but everyone deserves moments of ease and vulnerability.”
She opened the floor for Soumita and Usri to examine the absent systems that often force disabled people to become resilient in an inaccessible environment.
In this context, Soumita underlined the important intersection of gender and disability. She spoke about how there is a lot of talk about “empowering women” without any real follow-through. She pointed that this is doubly true for a woman with a disability. Instead of promises of empowerment, she asked allies to truly listen to the needs of disabled women.
Through pertinent examples Soumita highlighted how often accessibility becomes a thing to be ticked off in a checklist. For instance, invitations to speaking engagements where there is no wheelchair accessibility, or ramps in front of organizations, that are at built at such a steep slope that cannot be used by even non-disabled persons.
She spoke about the need for a shift in mindsets before a shift in infrastructure. Wherein, accessibility is not a simply a compliance but seen as a right for individuals who deserve equal access to an organisation. Speaking from personal experience, Soumita observed,
👉 how often employers view providing accommodations around time or functionality as a nuisance;
👉 how often organisations cite budget constraints when asked to design accessible systems;
👉 how there is an expectation from disabled persons to work at a lower wage or for free.
She concluded with the example of her own inclusive fashion brand, Zyenika, which works at a small scale but provides the customers with the adaptive clothes they need. They often make bespoke garments. Citing her own business model, Soumita noted that budgets around accessibility can be creatively worked around, where there is willingness, creative thinking and an entrepreneurial spirit.
“I was a golden child when I was younger, and I was academically gifted. But because the systems were not being able to keep up with my neurodivergence, I was the one who was feeling like a fish out of water.”
– Usri Basistha (they/she), Queer Affirmative Counseller, Associate, Equilibrio Advisory
Usri brought in the nuances of living with an invisible disability and what hidden costs are incurred by neurodivergent persons in an inaccessible world. They spoke about feeling a sense of isolation since their childhood. When their parents took them to a counsellor as a teenager, they compared their experiences with their peers and felt alienated.
They spoke about how often shame about being different is learnt at the family home. When their parents sought professional help, they did so from a perspective of “nipping it in the bud”; “it” being their neurodivergence. This was the birthplace of internal bias, where they began to see their ‘difference’ from their peers as something “wrong”, that needed to be fixed.
This internal script of “What is wrong with me?” was further reinforced in their college and university years. Although a bright student in school, Usri increasingly found it difficult to keep with their academic curriculum and heavily relied on the support of friends to get through exams. Speaking about the shame they felt seeing their grades drop, Usri remarked:
“I was a golden child when I was younger, and I was academically gifted. But because the systems were not being able to keep up with my neurodivergence, I was the one who was feeling like a fish out of water.”
Usri kept facing similar hurdles in other spaces too. As a journalist working in a noisy newsroom, which expected professionals to adopt a “fast-paced “lifestyle, Usri felt sensorily and cognitively overwhelmed and eventually burnt out. Even in the therapy room, they faced the stereotypical diagnoses of “borderline” and “bi-polar” which are often thrown at female-bodied persons, without proper assessment.
It was only in their late twenties that Usri came across the concept of neurodivergence and felt seen. Around the same time, they read a quote attributed to Albert Einstein,
“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”
The quote deeply resonated with Usri, as they felt it encapsulated their experience of a lifetime in a few lines. The feeling of being different yet being assessed and expected to function within parameters that are not designed to accommodate their differences. The feeling of growing up within a culture that identifies the problem within an individual, instead of the exclusionary systems.
Having looked at the various invisible costs of living with a disability in an inaccessible world, Rosanna steered the conversation towards what can be the way forward, for allies in the disability justice space.
Soumita reinforced the need to change intentions, instead of bringing in actions without a clear awareness of the needs of persons with disabilities.
👉 She emphasized the need for bringing in design thinking while building inclusive systems, instead of hurriedly retrofitting accessibility in an old structure that was not built to support it.
👉 She highlighted the need of building accessibility not just into structures but into processes. For instance, how internal SOPs (Statements of Purpose) should have workflows and clear demarcations of roles and timelines, to make it accessible for neurodivergent employees.
👉 She also underlined the need for inclusive communication. Speaking about hiring ads directed at disabled persons, she spoke about the prevalent practice of using language like “Looking for a person with locomotor disabilities”. She spoke to how that can be demeaning to the capabilities of a disabled person. She suggested such ads can be like any other hiring ad, with the added line that the employers are open to hiring individuals with disabilities.
Samriti, the co-founder of Equilibrio Advisory, and a clinical psychologist with over 15 years of experience of working with marginalized communities, brought in her perspective. Samriti spoke to how allyship hangs on a delicate balance of inclusion and affirmation. Aligned with Soumita and Usri’s lived experiences, Samriti lay down the blueprint of how accessible organizations can be built:
👉 She underlined the need to begin with introspection. Whether a system is working, whether retrofitting new structures into it will be sustainable. She spoke about the space for organizational reflection and the need to take ownership when a system is not accessible, and to walk away from it.
👉 The next step Samriti delineated was the need for awareness. Acknowledging the limited understanding of what disability entails, she referred to the Rights of Persons with Disabilities Act, 2016 and the 21 forms of disability listed therein.
👉 She affirmed the need to build on awareness with affirmative action. She spoke about the need for organizations to ensure representation of persons with disabilities at the table, while creating inclusive policies.
👉 She stressed on the need for leadership to reflect on whether the onus of change is being put on the “individual” or the “organization”. She explained that if the burden of change is put on the marginalized individual, it leads to added stress and burnout.
👉 On the other end of the spectrum, she warned that an organization should not stop with doing the bare minimum and expect the disabled individual to feel grateful that they were included at all. This can lead to the trap of tokenization, and superficial change that doesn’t take root.
👉 Elaborating further on the need to shift mindsets that Soumita alluded to, Samriti highlighted the need to re-evaluate normalized values that drive workplaces, like the idea of ‘hustle culture’, or ‘relentless productivity’. She spoke to how these unsustainable ideas need to be replaced with the need to centre employee wellbeing, while building systems.
👉 According to Samriti, this mind shift should extend to viewing the need for accessibility as a business proposition, instead of looking down on it as a charity exercise. To view inclusion as enhancing cognitive wealth, creating grounds for employee retention and innovation.
👉 Samriti counted affirmative measures like creating Employee Resource Groups (ERGs); reverse mentoring and coaching individuals with unique traits to optimize them instead of burying them; using technology like AI to create accessible work processes; as easy to implement strategies that go a long way in embracing diversity and fostering inclusion.
👉 She emphasized the need for leadership to take account of the dents that are incurred during the life cycle of an employee that contribute to feelings of alienation and high rates of attrition. Samriti suggested the creation constant feedback systems, to address the needs of a diverse set of employees.
Samriti alluded to American psychologist Abraham Maslow’s ‘hierarchy of needs’ framework. She explained how the framework details the needs an individual has in an ascending order. When basic physiological and safety needs are ensured, an individual craves for psychological safety. To elaborate further, Samriti spoke about when an intern feels as comfortable to float an idea at a team meeting as the founder, then an organization has reached a healthy level of psychological safety, without which any effort of inclusion falls through. Because it fosters a sense of belonging in all employees.
Urging for the need for leadership to become allies, Samriti ended on the note that building inclusive structures end up benefitting all employees. It leads to the creation smoother processes, and healthy work cultures, where all employees feel safe and valued, irrespective of whether an employee is neurodivergent or neurotypical, disabled or non-disabled.
Transcribed by Usri Basistha
Speakers: Soumita Basu, Samriti Makkar Midha, Usri Basistha; Moderator: Rosanna Rodrigues
Disability includes a wide spectrum of experiences, including non-apparent disabilities such as chronic pain, auditory impairments, psychiatric disabilities, and neurodivergence. The commonly used wheelchair icon represents only a small part of this diverse community.
People with acquired disabilities often face shifting perceptions from others, who may underestimate their capabilities or assume their lives lack purpose. Invisible disabilities can lead to misunderstanding and invisibility, reinforcing stigma and exclusion.
Spotlighting resilience can overlook the exhaustion and systemic barriers disabled people face daily. True equity requires recognizing these challenges and creating accessible environments rather than expecting individuals to constantly adapt and hence be resilient.
Organizations should embed accessibility into both infrastructure and processes, use inclusive communication, practice design thinking, promote representation, provide accommodations without stigma, and foster psychological safety through leadership commitment.
Effective allyship involves awareness, introspection, affirmative action, challenging tokenism, re-evaluating harmful workplace norms like ‘hustle culture,’ and viewing accessibility as a business strength that benefits all employees by fostering belonging and innovation.
