Context

• The Rights of Persons with Disabilities (RPWD) Act, 2016 was introduced to safeguard dignity, equality, and inclusion for persons with disabilities in India, in line with the United Nations Convention on the Rights of Persons with Disabilities.
• However, the revised guidelines issued in March 2024 to assess the disability status of individuals with sickle cell disease (SCD), beta thalassaemia, and related blood disorders highlight the persistent tension between intent and implementation.
• While recognition of SCD under the Act represents progress, the exclusion of such conditions from employment reservations and the rigid certification process, undermine the law’s transformative potential.

The Legal Framework and Its Limits

• The RPWD Act categorises persons with benchmark disabilities those with at least 40% impairment, as eligible for benefits such as free school education, development assistance, and quotas in public sector employment.
• Yet this framework rests heavily on biomedical measurement, which often fails to reflect lived experiences.
• The guidelines for SCD continue to rely on impairment scoring, privileging visible or easily quantifiable conditions while overlooking chronic, fluctuating, and invisible disabilities.
• This narrow approach conflicts with the Act’s stated goal of recognising disability as not merely a medical condition but as a product of social and structural exclusion.
• By failing to extend the 4% reservation in public sector jobs to individuals with SCD, the government has effectively diminished the value of acknowledging the condition under the Act.
• The result is a form of symbolic recognition that does not translate into tangible protections.

The Nature of Sickle Cell Disability and Barriers in Certification

• The Nature of Sickle Cell Disability
  • SCD is a lifelong, painful, and disabling blood disorder that disproportionately affects marginalised Adivasi and Dalit communities.
  • Though its symptoms may not always be outwardly visible, the disease entails recurrent pain crises, anaemia, organ damage, and frequent hospitalisation from childhood onwards.
  • These episodes interrupt education, limit livelihood opportunities, and shorten life expectancy.
  • The social stigma surrounding the disease further compounds the challenges faced by affected individuals, making them vulnerable to discrimination in schooling, employment, and healthcare access.
• Barriers in Certification
  • Certification is the gateway to most entitlements under the RPWD Act.
  • However, obtaining a disability certificate for SCD patients is fraught with difficulties.
  • Diagnosis requires confirmatory tests from government or accredited laboratories, followed by evaluation by a district medical authority.
  • The scoring system assigns points based on complications such as transfusion frequency, neurological impact, or degree of pain.
  • This mechanistic approach often excludes individuals whose disability manifests episodically or whose symptoms are primarily invisible.

Socioeconomic Consequences and the Way Forward

• Socioeconomic Consequences
  • The inadequacies of the current framework have direct implications for education, employment, and poverty alleviation.
  • Children with SCD often miss school due to hospitalisation, while young adults face disrupted career trajectories and recurrent job losses because of painful episodes.
  • Despite this, the denial of job reservations under the RPWD Act deprives them of opportunities for stable livelihoods.
  • Economic exclusion is reinforced by gaps in social protection.
  • While income tax deductions and enhanced pension schemes exist for persons with certified disabilities, many SCD patients remain unable to access them due to restrictive scoring and certification hurdles.
  • This perpetuates a cycle of vulnerability in which health burdens and social disadvantage feed into one another.
• The Way Forward: Towards a More Inclusive Framework
  • Several reforms are essential if the RPWD Act is to fulfil its promise of equality.
  • First, job reservations should be extended to individuals with SCD and other chronic blood disorders, recognising the condition as a significant lifelong disability.
  • Second, the certification process must be reformed to account for fluctuating and invisible disabilities.
  • Instead of rigid scoring systems, assessments should adopt a rights-based approach that considers the broader socioeconomic impact of chronic illness.
  • Third, outreach and support mechanisms must be strengthened for marginalised communities, ensuring that access to certification and entitlements does not depend on geographical or financial privilege.
  • These measures would align with the Act’s original spirit: moving away from a narrow medical lens and acknowledging disability as a product of social exclusion and systemic barriers.

Conclusion

• The recognition of sickle cell disease under the RPWD Act marks an important step, but without substantive rights and protections, it risks becoming a hollow gesture.
• By excluding SCD from employment reservations and relying on inaccessible certification processes, the state undermines the very principles of dignity, equality, and inclusion that the Act was meant to uphold.
• Disability must be understood not only as an impairment but as a lived experience shaped by social, economic, and structural inequities.
• For India’s disability rights framework to be truly inclusive, it must embrace chronic and invisible conditions such as SCD, ensuring that recognition translates into real, enforceable rights.