Representation without power is not inclusion. It's illusion

Time of India

4 days ago

If somebody writes an epitaph to Sangita, it should be headlined 'Happy Soul'. Nothing fazes her. No challenge is too big. A fan of James Bond's 'never say die' spirit, just like him she thrives on adrenalin rush as she fields every curveball life throws her way. Sangita is a person with multiple disabilities. A patient of Spinal Muscular Atrophy (SMA), Sangita is a wheelchair user and hearing aids user. For the past 10 years, she has been whizzing past life in a wheelchair, notching professional milestones. She believes nothing is insurmountable, certainly not limitations imposed by disabilities. Sangita has three decades of experience in the media, content and communications industry across verticals and industries. She has been associated with the development and disability sector and featured in the first Directory of Development Journalists in India published by the PII. She has also functioned as a media representative of the Rehabilitation Council of India and has conducted various S&A programmes for bureaucrats. Sangita is the founder of Ashtavakra Accessibility Solutions Private Limited, a social enterprise dedicated to the inclusion of the disabled. LESS ... MORE
In the absence of real power and representation, tokenism can take insidious forms. A stakeholder consultation on a policy paper that becomes just an exercise in photo-op to check the box, awards that glorify and normalise exceptional few as templates for disabled achievement while erasing the systemic barriers faced by the many, accessibility measures that start with a ramp and end in a road that opens on a heavy traffic route with no zebra crossing, no tactile path, no thought for safety…
These are not imaginary scenarios but the reality of disability inclusion. Tokenism doesn't just distort the goal of inclusion; it becomes a dangerous substitute for it. And until representation comes with real power, budget, and accountability, the system will continue to applaud itself while failing the very people it claims to uplift.
A slogan without power: The illusion of representation
So how do we ensure a course correction?
'Nothing about us without us' will remain a slogan unless persons with disabilities (PwDs) find real representation across the spectrum—starting with politics. Without seats at the table, policies designed for disabled people will continue to be made through the lens of charity, not clarity. And if you have your ear to the ground, you'd have heard the rising murmurs from the disabled community: 'We want our rights not charity'.
Over 1.3 billion people worldwide live with some form of disability. That's roughly 15% of humanity. Yet, when it comes to elected office, where are the PwDs? The answer is obvious – invisible and ignored.
Worse, they are considered unfit to hold office, while inaccessibility of the election process prevents them from even exercising their franchise.
It is little wonder then that while many democracies have made gains in gender, racial, and caste inclusion, disability remains the last frontier, rarely prioritized, often ignored. This issue is not just about representation. It's about leadership. It's about missed voices, policy blind spots, and a crisis of democratic legitimacy.
For real difference, inclusion must go beyond symbolism and must mean actual power.
Representation lags behind: A global snapshot
Despite comprising over 15% of the world's population, persons with disabilities (PwDs) have historically been excluded from political power. One of the largest minority groups in the world, PwDs are barely present in elected positions of power in the world.
In United Kingdom, only five Members of Parliament (MPs) in 2021 identified as disabled—just 0.8% of the House of Commons. Meanwhile, 21% of the UK population reports having a disability.
In the United States, a Rutgers University study found that 10.3% of elected officials at various levels reported a disability, compared to 15.7% of the U.S. population. At higher levels of government, that number drops even further.
In the European Union, most EU nations show disability representation in parliament at well below 1%. Despite legal commitments to equality, the reality falls short.
While in India, estimates place the number of PwDs in India between 26 and 70 million. Yet, in the 2024 Lok Sabha elections, not a single MP declared a disability.
A snapshot of disability-inclusive political reforms
While the right to vote has seen incremental progress, the right to represent, legislate, and lead has remained elusive. However, over the last three decades, a series of global and national reforms—ranging from legislative quotas and electoral access laws to grassroots political appointments—have begun to challenge this exclusion. These moments signal the slow but necessary evolution from symbolic participation to structural power.
Some governments have moved beyond lip service and taken concrete steps to ensure PwDs are not just visible but powerful in politics.
Uganda has five reserved parliamentary seats for PwDs and mandates their inclusion in every local council
Kenya and Rwanda constitutionally guarantee representation for PwDs in both national and regional assemblies
New Zealand enacted the Election Access Fund, reimbursing campaign expenses like interpreters and accessible transport
Australia has proposed a federal Election Access Fund of $5 million, modelled on New Zealand's success
Role models: Leading despite the odds
Against the tide, a small but powerful group of leaders with disabilities have broken through, not just as symbols of resilience but as architects of policy. What sets these leaders apart isn't just that they live with a disability—it's that they bring lived experience to policymaking in ways that non-disabled counterparts often cannot.
Tammy Duckworth (USA) is a U.S. Senator and Iraq War veteran who lost both legs in combat. Her legislative legacy is rooted in more than advocacy. She's driven institutional change. She co-authored the 'Access to Congressionally Mandated Reports Act' and has been a consistent voice for accessible healthcare and transportation.
Mojo Mathers (New Zealand) became the first Deaf MP in New Zealand's history and instead of simply representing the community, she changed the system. Thanks to her efforts, New Zealand established the Election Access Fund, which reimburses disability-related campaign expenses.
Jordon Steele-John (Australia), elected to the Senate at just 23, brought both youth and disability perspectives into Australia's political narrative. A wheelchair user with cerebral palsy, he consistently pushes for intersectional reforms.
Crystal Asige (Kenya), who lost her sight as an adult, has transformed her personal experience into legislative action. As a nominated senator, she has driven legal reforms including caregiver tax relief, inclusive education funding, and digital accessibility.
Systemic exclusion
This underrepresentation is not coincidental—it's systemic. The barriers to political representation are structural, legal, and cultural. Let us find out how each of these barriers is a roadblock in political representation of the PwD.
Physical and infrastructural inaccessibility: Politics is conducted in public spaces. Unfortunately, most offices, campaign trails, legislative halls are often inaccessible. In many countries, including India, basic features like ramps, accessible transport, and adaptive technology are still missing.
Financial exclusion: Running for office is expensive. For PwD candidates, it's even more costly because they need assistive technology, personal aides, interpreters, and accessible communication methods, a financial burden few can bear in this game of dice. Few countries offer financial support to cover these disability-related campaign costs.
Legal and institutional gaps: While many nations have quotas for gender or caste representation, legal frameworks mandating political inclusion of PwDs are rare. India has no national-level reservation or requirement to include PwDs in legislatures.
Social and media bias: The framing of PwDs by media as either tragic figures or inspirational stories has ensured that they are not seen as serious political actors. Public perception still sees disability as a deficit, not a dimension of diversity.
Together, these barriers create a cycle of exclusion that keeps political doors closed to a significant portion of the population.
Source: Secondary research
[To be continued in Part 2: 'From Symbol to Power: A New Chapter in Disability Representation']
In Part 2, we explore how India's disability rights movement evolved, highlight state-level breakthroughs in Chhattisgarh and Tamil Nadu, and present what real inclusion could look like—from the grassroots to Parliament.
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Views expressed above are the author's own.