Source: The post Recognising sickle cell disability must translate into real protections has been created, based on the article “Sickle cell: The battle for disability justice” published in “The Hindu ” on 3 September 2025. Recognising Sickle Cell Disability Must Translate Into Real Protections.
UPSC Syllabus Topic: GS Paper 2- Governance-mechanisms, laws, institutions and Bodies constituted for the protection and betterment of these vulnerable sections.
Context: In March 2024, India revised RPWD guidelines to assess disability for sickle cell disease and related haemoglobinopathies. Recognition raised hopes of reservations and services. Exclusion from the employment quota triggered criticism.
For detailed information on Persons with Disabilities in India read this article here
What do the March 2024 RPWD guidelines specify for assessing SCD and related disorders?
- Scope of assessment: The guidelines set norms to assess those with two sickle genes, or SCD with beta thalassaemia or Hb D. They frame how disability is measured in these conditions.
- Expected benefits: Recognition was expected to unlock access to land, housing, poverty schemes, education, work, and healthcare.
- The quota gap: The Act’s 4% job quota covers vision, hearing, locomotor, and intellectual disabilities. SCD and other blood disorders are excluded.
How does the RPWD Act define rights and eligibility?
- Rights-based promise: The Act aligns with the UN Convention. It promises dignity, equality, and non-discrimination, and broadens legal recognition.
- Benchmark threshold and entitlements: “Benchmark” means 40% or more impairment under Section 2(r). It enables free school education, reservations in higher education, development assistance, and government employment.
- Subjective measurement: The 40% cut-off excludes many. Percentages vary across hospitals and boards, showing subjectivity in impairment scoring.
What is the lived impact of SCD?
- Debilitating yet often invisible: SCD causes recurrent pain, fatigue, anaemia, organ damage, and frequent hospitalisations from early childhood. The condition may not look disabling, but it is progressive and severely limiting.
- Education and livelihoods: Crises from childhood cause hospital stays and long recoveries. Students miss classes, fall behind, and schooling becomes irregular. In working years, unpredictable pain and fatigue interrupt shifts and undermine reliability. Jobs are lost, and livelihood options shrink. Long-term prospects steadily worsen.
- 3. Stigma and a narrow lens: Stigma and discrimination intensify barriers, especially for Adivasi and Dalit communities. A narrow, biomedical focus undervalues chronic, fluctuating, and invisible disabilities, limiting access to full protections. Life expectancy also falls.
How does certification place the burden on patients?
- Certification as prerequisite to benefits: To access enhanced pensions in Odisha and Himachal Pradesh and tax relief under Section 80U, people must first obtain a disability certificate issued under Section 58. Making certification the entry pass shifts the burden onto patients.
- Biomedical hurdles: Certification by a medical authority, including the chief medical officer, needs confirmatory tests from government or standard labs.
- Scoring blind spots: Point-based grading weighs pain, transfusion needs, and neurological complications, but misses socioeconomic and emotional tolls.
- Access barriers: Adivasi and Dalit patients in remote areas struggle to arrange tests or reach district hospitals. Young people miss school or lose jobs yet fail to attain a higher score.
What must change now, and why?
- Include SCD in reservations: Extend job reservations to SCD and related blood disorders to reflect their lifelong disability.
- Fix certification: Redesign certification to account for fluctuating and invisible disabilities through a rights-based, not purely biomedical, lens.
- Make recognition real: Rights must translate into protections. Otherwise, recognition risks exclusion disguised as inclusion.
Question for practice:
Discuss how the RPWD Act’s 40% benchmark and certification process affect access to benefits for people with sickle cell disease.
