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Sickle cell: The battle for disability justice Premium

03 Sep 2025
2 min

Revised Guidelines under the RPWD Act, 2016

In March 2024, the Indian government revised guidelines under the Rights of Persons with Disabilities (RPWD) Act, 2016 to assess disability for individuals with sickle cell disease (SCD), beta thalassaemia, or Hb D. These guidelines were expected to provide benefits such as reservations in agriculture, housing, education, work, and healthcare for afflicted individuals.

Exclusion from Public Sector Reservations

  • The RPWD Act provides a 4% reservation for those with vision, hearing, locomotor, and intellectual disabilities in public sector employment.
  • Individuals with SCD and related blood disorders are excluded from these reservations, sparking criticism.

Legal Protections and Definitions

The RPWD Act, 2016 aligns with the UN Convention on the Rights of Persons with Disabilities, emphasizing dignity, equality, and non-discrimination.

  • It expanded the legal definition of disability, introducing rights-based protections for 'benchmark disabilities'.
  • Section 2(r) defines 'benchmark' disabilities as impairments of 40% or more, qualifying for additional benefits.
  • This threshold excludes many whose impairment is less than 40%.

Challenges in Disability Certification

The percentage of disability assigned can vary widely between medical authorities, affecting qualification for benefits.

  • SCD, although debilitating, might not be visibly disabling, leading to inconsistent assessment outcomes.
  • Socioeconomic and emotional impacts are often overlooked in the certification process.

Barriers and Recommendations

  • The certification process is inaccessible for many, especially marginalized communities in rural areas.
  • Suggested reforms include extending job reservations for SCD and refining the certification system for invisible disabilities.

Additional Benefits Under Indian Law

  • States like Odisha and Himachal Pradesh provide enhanced pensions for severe disabilities.
  • Section 80U of the Income Tax Act allows deductions for certified disabilities.

Gargi Mishra, Sarojini Nadimpally, Lila Shriram, and Ragini De emphasize that disability is a lived experience influenced by social exclusion, structural barriers, and policy gaps. The recognition of SCD must lead to real rights and protections to prevent exclusion under the guise of inclusion.

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