INDIA DISABILITY WATCH

On September 6, 2025, ASTHA and the Politics & Disability Forum co-hosted a national webinar on Census 2027 and the Disability Sector.

The session brought together leaders and practitioners from across the disability rights movement to reflect on the upcoming census, its implications for persons with disabilities (PwDs), and strategies for collective action.

The discussion is timely. India faces its longest ever gap between two census exercises — 2011 to 2027. Accurate disability data is central to budget allocations, welfare policy design, and political representation. Yet, disability enumeration in past censuses has been marred by undercounting, stigma, poor question design, and lack of political priority. The 2027 Census, with its new digital features, presents both opportunities and risks for the disability sector.

Context Setting
Pratik (ASTHA) opened the discussion, emphasising the need to learn from past census experiences and prepare collectively. He noted that while technical procedures are evolving, the lived realities of PwDs, NGOs, and Disabled People’s Organisations (DPOs) must be at the centre of advocacy and awareness

Learning from Past two Census: 2011 and 2001
Ms Rama drew on her experience from earlier census advocacy campaigns:
● Colonial Era (1881–1931): Disability was counted in four categories (leprosy, blindness, locomotor disability, and deafness). Dropped in 1931 due to poor data quality.
● Post-Independence: Disability included only in 1981(three categories), excluded again in 1991.
● 2001 Census: After a vigorous national campaign led by NCPEDP and Javed Abidi, disability was included in five categories.

This marked the first real disability data in independent India.
● 2011 Census: Expanded to more categories and introduced “Any Other.” Advocacy was more collaborative, but challenges persisted:
○ Enumerators skipped disability questions.
○ Families often hesitated to disclose disabilities.
○ Awareness campaigns (TV spots, rallies, training modules) were resource-intensive but necessary.

Grassroots Advocacy and Engagement
Ms Smitha Sadasivan stressed the need for a movement approach:
● Enumerator Challenges: Target-driven field staff often rush through questions, skipping disability-related entries.
● Stigma: In some areas, enumerators faced hostility when asking about disabilities.
● Political Will: Despite legal mandates, disability data often receives low priority (e.g., disability questions were excluded from NFHS-6).
● Recommendations:

1. Treat disability enumeration as a national movement with active participation across all disability groups.
2. Break stigma through awareness campaigns (invoking Section 39 of RPWD Act on awareness-raising).
3. Build political visibility by engaging MPs, MLAs, and leaders to champion the cause.
4. Strengthen local-level ownership: involve PwDs directly in district-level census coordination.

Invisible Disabilities and Stigma
Ms Nikita Sarah (The Leprosy Mission Trust India) highlighted gaps in capturing invisible disabilities and conditions with high stigma (e.g., leprosy, mental illness, autism):

● Issues:
○ Families hide conditions due to discrimination.
○ Enumerators lack empathy and training to handle sensitive disclosures.
○ Proxy reporting worsens undercount.

● Recommendations:
○ Train enumerators to approach sensitive questions with confidentiality and empathy.
○ Use functional, non-stigmatizing language (e.g., “loss of sensation” instead of “leprosy”).
○ Leverage NGOs and self-help groups to support community-led enumeration.
○ Ensure “Any Other” remains in the disability section to capture emerging/uncategorized conditions.
○ Run parallel awareness campaigns to normalize disability as part of human diversity.

Audience Inputs
Participants raised several concerns:
1) Homeless & Document-less PwDs: Census is a declaratory exercise, not validation-based — such persons will be included.
2) NGO–Government Collaboration: Past (2011) examples show NGOs can partner in training and awareness; this should be expanded in 2027.
3) Digital Access Barriers: Self-enumeration requires email IDs and OTPs, potentially excluding rural and tribal populations.
4) Tribal Areas: Connectivity issues, lack of specialists, and limited awareness may leave many PwDs uncounted.
5) Self-Enumeration Risks: While it may reduce stigma, poor accessibility design could undermine its effectiveness.

Please read the detailed outline and recommendation from the session in the Session Report attached below.