It’s been 13 since a car accident left Justin Jesudas paralysed below the neck.
After grappling with the initial challenges of accepting this new reality, Jesudas shifted his focus to what he could accomplish.
Today, as a para-athlete, social innovator, and inclusion advocate, he stands out. He is a prominent voice in the community advocating for disability inclusion.
Currently serving as the Chief Operating Officer at the Rehabilitation Research and Device Development (R2D2) at IIT Madras, Jesudas and the team at R2D2 have been dedicated to implementing a wheelchair skills training programme. The programme is part of the National Centre for Assistive Health Technologies, IIT Madras (NCAHT-IITM), implemented by R2D2.
Who has the access?
According to the 2011 census, around 2.68 crore people in India have disabilities.
Of this group, 20% experience disabilities related to movement, and only a fraction of them have access to wheelchairs.
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“It’s important to note that this statistic is outdated and likely represents a minimum figure, potentially underestimating the actual size of the disability population in the country,” Jesudas shares.
Even when there is access to wheelchairs, their usability and optimisation are currently minimal, presenting a significant barrier for individuals with disabilities.
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“Both rehabilitation and assistive technology are intricate when examined closely. The diversity in disabilities and technology requirements across the spectrum adds to the complexity,” he says.
Talented engineers often develop innovative solutions, but the crucial question remains: who will benefit from these solutions?
“Even for mainstream products, not everyone fully utilises them, and sometimes usage is coerced. Given this backdrop, especially in a market where needs and customisation are highly variable, individuals with lived experiences bring valuable insights,” shares Jesudas.
It is this journey, of his lived experience that has allowed Jesudas to engage with engineers and researchers developing assistive devices.
Empowering through engagement
The wheelchair skills programme that was initiated about six months ago is about providing stakeholders with empowerment, independence, and unbridled possibilities.
So how does developing wheelchair skills contribute to these goals?
“Training is essential for any device, not just wheelchairs. However, the significance of the right device choice cannot be overstated,” he says.
“Skilling should start at the point of selection, ensuring appropriate devices for various contexts like schools, offices, or public spaces. With persistent architectural barriers, empowering individuals to navigate and negotiate these obstacles is crucial for community participation,” he emphasises.
Upskilling through self-discovery
Reflecting on his own experience, Jesudas narrates: “When I acquired my disability 13 years ago, I was directed to Nampally to get a wheelchair. Similar advice is being given even after more than a decade.”
Hospital-grade wheelchairs designed for medical settings are not suitable for community use.
“This lack of awareness results in challenges, like navigating small thresholds and different terrains. Over time,” he says.
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Over time, discovering through these challenges, Jesudas has learned skills such as wheelies and effective pushing techniques to navigate through different terrains. “This reduces dependability,” he says.
“Empowering individuals involves providing basic manoeuvrability skills, intermediate techniques for challenging terrains, and advanced skills for navigating even a flight of stairs,” he explains.
A programme of possibilities
At the Centre, peer trainers (Also wheelchair users) showcase the possibilities by engaging trainees in real-world scenarios like beaches, movies, metro rides, and public spaces.
“Since its inception, we have trained three batches of 15-20 people. We have so far trained about 60 people. Accommodation and food are provided, acknowledging that many lack livelihoods,” he says.
The programme’s success lies in its evolution from a single peer trainer to three, two of whom were recently inducted after participating in the pilot training.
“So, this initiative not only provides skills but also serves as a livelihood opportunity,” he shares.
Training for all
The programme has experienced substantial expansion in recent months. Notably, it is intriguing to observe that participants come from diverse backgrounds and experiences.
“In the initial batches, individuals were primarily from Tamil Nadu, and now we have participants from Kerala, Karnataka, and Andhra Pradesh. In the first two batches, many were completely unemployed or had discontinued education, due to accidents during school or college. Some had finished their graduation but struggled to secure employment,” he shares.
In the most recent batch, participants include individuals with a PhD in biotech, a master’s in hospital management, and even someone with a background at the RBI.
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“The diversity of backgrounds is interesting, leading us to explore ways to support them not just in physical rehabilitation but also in connecting with other organisations to pursue livelihoods or further education,” he says.
Looking ahead, they plan to expand the peer training team’s reach.
“In the coming year, we aim to travel across India, collaborating with rehabilitation centres and NGOs to scale up the skills programme through train-the-trainer initiatives,” he shares.
Gaps in legislation
He says that while the Rights of Persons with Disabilities Act itself is comprehensive and solid, its implementation leaves much to be desired.
“For instance, it provides guidelines on actions like counting the number of employees with disabilities but lacks stringent penalties for non-compliance. From a broader perspective, many government agencies lack a choice-based system for providing assistive devices,” he shares.
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Fortunately, the Tamil Nadu government has adopted a user-choice approach, enlisting 4-5 companies to offer customisable devices.
“However, several other states in India still employ a one-size-fits-all model. This offers limited customisation, imposing devices on users. From a policy standpoint, considerations must extend beyond basic needs to educational changes and technological advancements,” he shares.|
Disconnect in decisions
However, the challenge is that policy decisions are often made by individuals without lived experiences of disability or assistive technology.
“This disconnect, from government-level policy-making to corporate decisions, perpetuates an ‘us versus them’ mentality. Ninety per cent of the world’s population, with a limited understanding of disability, attempts to make policies for persons with disabilities (PwDs), leaving the remaining 10 per cent excluded. It is essential to shift from this divisive approach to a collaborative effort, acknowledging that ‘nothing about us without us,'” he asserts.
Know before you donate
In India, wheelchairs are often the most frequently donated assistive devices. However, a common issue arises because the buyer, whether NGOs, public donors, or government agencies, is typically not the end user. This results in a significant rejection rate for donated wheelchairs.
When purchasing wheelchairs for donations, it’s crucial to consider the specific needs of the users.
“Understanding their demographics, usage patterns, and appropriate device selection should be the foremost consideration. The wheelchair is an extension of the person’s body and should fit them as comfortably as a pair of shoes, trousers, or a shirt,” he shares.
He emphasises the importance of need-based selection because of the calls received from corporate CSR teams expressing a desire to donate devices such as standing wheelchairs.
“However, it’s crucial to question the target consumer. Simply providing standing wheelchairs because they appear emotionally appealing may not serve the actual needs of individuals. For instance, someone like me, who hasn’t stood in eight years, risks bone fractures with a standing wheelchair,” he shares.
Understanding these needs is vital. Wheelchair selection is similar to choosing shoes for different activities — running, hiking and so on.
“Wheelchairs come in various forms and shapes, and the type of tire suitable for an urban setting may differ from that needed in a rural setting. In some cases, three-wheeled profiles are preferred for rural terrains,” he elaborates.
These thoughtful processes need to be part of the decision-making. The focus should be on functional needs. Once selected, it’s essential to ensure a proper fit.
“Just as an 8-sized foot can’t use a size 13 shoe, the wheelchair should be tailored for the user. Precise measurements and a generated prescription are essential. Eliminating the need for a representative during the wheelchair selection process is crucial. Users should have the flexibility to customise their devices,” he says.
Focus on functionality
Customisation should include backrest adjustability, footrest adjustability, and the ability to change wheel types based on the terrain.
“This level of adaptability is crucial, especially in diverse environments. Ultimately, the primary question is — ‘What is the user’s requirement?’ By focusing on functionality, proper fit, and customisation, we can ensure that the donated wheelchairs meet the specific needs of individuals,” he says.
Furthermore, the group is also working on designing a lightweight, active pediatric wheelchair.
“We focus on encouraging children to actively engage with the device, unlike the majority of pediatric wheelchairs that are pushed by parents or caregivers,” he shares.
The estimated people with disabilities in India are not adequately visible in public spaces, contributing to a lack of understanding in the broader community.
“This awareness gap needs to be addressed comprehensively across policymakers, the medical community, and the general public,” he says.
Future goals & initiatives
Looking forward, the R2D2 initiative is gearing up to bring several devices to market, with a total of nine devices in their roadmap set to launch within 3-5 years.
“Simultaneously, NCAHT is embarking on diverse projects and programmes to enhance the user experience and enlighten policymakers on how to reshape the landscape. Our initiatives involve engaging clinical teams and peer trainer teams across India to drive impactful changes,” he shares.
Within the Experience Centre, four themes will be launched next year, each focused on raising public awareness.
The themes will include challenges faced by People with Disabilities (PWDs) in public transportation, and exploring themes like home and office adaptations for enhanced quality of life.
“Themes will also delve into aspects of relationships, family, and related themes. Furthermore, the strategic vision involves nurturing startups,” he shares.
Nurturing start-ups & global vision
By incubating and fostering more start-ups, the centre aims to facilitate venture building and streamline the commercialisation of assistive devices.
“Personally, my focus lies in creating more opportunities. Feeling blessed and fortunate, I strive to extend these blessings to others within the community, ensuring that everyone has a fair chance to lead their lives. The goal is to not just survive or manage, but to live life,” he shares.
The success of rehabilitation and assistive technology, Justin says, should translate into active community participation, improved quality of life, and increased social acceptance.
“Emphasising social equality, equity and inclusion is crucial in achieving these goals. In the coming years, we anticipate significant changes in the landscape. Should the government mandate insurance for assistive technology, it could mark a pivotal moment, making India one of the largest and most crucial assistive tech markets globally,” he shares.
Simultaneously, preparing to globalise their designs, understanding that going global is integral to overcoming volume challenges, Jesudas adds, “This comprehensive approach guides our efforts as we envision a more inclusive and accessible future.”
To experience assistive technologies and skill training, visit Instagram @NCAHT_IITM