Sickle Cell and Disability Justice in India

Why in the News?

1. In March 2024, the Government of India issued revised guidelines under the Rights of Persons with Disabilities (RPWD) Act, 2016 for assessing disability in people with Sickle Cell Disease (SCD), SCD with Beta Thalassaemia, or Haemoglobin D (Hb D).
2. This recognition was expected to bring reservations and welfare benefits for people with these conditions, but the exclusion from the 4% reservation quota in education and jobs has led to disappointment and criticism.
3. The issue has reignited debate on the definition of disability, the 40% benchmark threshold, and the mismatch between medical scoring systems and lived experiences of disability.

Key Highlights

1. Sickle Cell Disease (SCD) and its Impact
   1. Sickle Cell Disease is a painful, progressive, and disabling blood disorder.
   2. It leads to recurrent episodes of pain, anaemia, fatigue, organ damage, and hospitalisation.
   3. It disproportionately affects Adivasi and Dalit communities, turning it into a social justice issue.
   4. Despite being debilitating, it is not always visibly disabling, which complicates recognition under law.
2. Provisions under the Rights of Persons with Disabilities (RPWD) Act, 2016
   1. The Act aligns with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
   2. It ensures dignity, equality, and non-discrimination for persons with disabilities.
   3. The Act expanded the legal definition of disability and introduced rights-based protections for those with ‘benchmark disabilities’ (40% or more impairment).
   4. Persons with benchmark disabilities are entitled to reservations in education, government jobs, development schemes, and healthcare support.
3. Exclusion of Blood Disorders from Reservation Quota
   1. The 4% quota in public sector employment covers vision impairment, hearing impairment, locomotor disabilities, and intellectual disabilities.
   2. However, blood disorders like Sickle Cell Disease, Thalassaemia, and Haemophilia are not included in the quota.
   3. This exclusion has raised concerns about the narrow and medicalised view of disability.
4. Problems with Disability Certification
   1. Disability certification under Section 58 of the RPWD Act requires evaluation by medical authorities.
   2. Diagnosis reports must be from government-recognised laboratories, followed by a scoring system that assigns points based on pain episodes, transfusion requirements, and complications.
   3. The scoring system fails to capture episodic, fluctuating, and invisible symptoms of Sickle Cell Disease.
   4. For rural and tribal patients, travel to hospitals, cost of tests, and limited access make certification extremely difficult.
5. Gap Between Law and Lived Experience
   1. Disability is shaped not just by medical conditions but also by stigma, poverty, and structural barriers.
   2. Individuals with Sickle Cell Disease often miss schooling, lose jobs, and face reduced life expectancy even if their disability percentage is certified as below 40%.
   3. The continued dependence on biomedical scoring undermines the rights-based vision of the RPWD Act.

Implications

1. For Social Justice
   1. Excluding Sickle Cell Disease patients from reservations perpetuates inequality, particularly among Adivasi and Dalit communities.
   2. It denies them opportunities in education, employment, and welfare schemes.
2. For Public Health
   1. Lack of recognition reduces access to affordable treatment, regular check-ups, and preventive healthcare.
   2. Chronic pain, frequent hospitalisations, and risk of organ damage remain under-addressed in health policy.
3. For Disability Rights
   1. The rights-based approach of the RPWD Act is undermined if invisible or fluctuating disabilities remain excluded.
   2. This reflects a step backward in aligning with the United Nations Convention on the Rights of Persons with Disabilities.
4. For Governance and Policy
   1. The complex certification process makes it difficult for people in remote and tribal areas to access disability benefits.
   2. The uniform guidelines fail to reflect the realities of chronic, lifelong illnesses like Sickle Cell Disease.
5. For Socio-Economic Development
   1. Denial of reservations in jobs, education, and poverty alleviation schemes traps patients in cycles of poverty and exclusion.
   2. It worsens the economic marginalisation of tribal and Dalit communities.

Challenges and Way Forward

Conclusion

The revised guidelines under the Rights of Persons with Disabilities Act, 2016, mark an important step in acknowledging Sickle Cell Disease. However, the exclusion from reservations and dependence on rigid biomedical scoring dilute the law’s intent. Disability must be recognised as a lived experience shaped by social and structural barriers, not just by visible impairment. Unless India reforms its policies to include blood disorders in reservations and simplify certification, recognition will remain symbolic, offering inclusion in words but exclusion in practice.