[Answered] Reliance on biomedical scoring for disability overlooks the lived reality of sickle cell disease. Critically analyze how this undermines disability justice and the purpose of recognising the condition under relevant Acts.

Introduction

India has nearly 20 lakh sickle cell disease (SCD) patients (ICMR, 2022), disproportionately among Adivasi and Dalit groups. Over-reliance on biomedical scoring excludes many from protections promised under the RPWD Act, 2016.

Understanding Sickle Cell Disease and Disability Justice

1. SCD: A genetic blood disorder causing recurrent pain crises, anaemia, organ damage, and reduced life expectancy.
2. Disability Justice: A rights-based framework that goes beyond medical impairments to include social, economic, and cultural exclusion (UNCRPD, 2006).
3. The RPWD Act, 2016 expanded disability recognition to 21 conditions, including blood disorders, aligning with India’s constitutional promise of equality (Article 14 & 21).

Biomedical Scoring: The Narrow Lens

1. Rigid Thresholds: Disability certification under the Act requires 40% benchmark disability, quantified by episodic symptoms like transfusion needs or pain scores. Many SCD patients fall below this despite severe daily challenges.
2. Subjective Assessment: Studies (NITI Aayog, 2023) show inconsistent grading across hospitals, leading to exclusion due to medical subjectivity rather than lived disability.
3. Invisible Disabilities: Episodic pain, fatigue, and stigma are not easily “measured,” making SCD invisible in the biomedical lens, though socially and economically devastating.
4. Access Barriers: For tribal patients in Jharkhand, Odisha, Chhattisgarh, reaching tertiary hospitals for certification is itself exclusionary.

How This Undermines Disability Justice

1. Denial of Rights: Without benchmark recognition, SCD patients are denied 4% public job quota, higher education reservations, and land/poverty alleviation benefits envisioned under RPWD Act.
2. Exclusion from Social Protection: Schemes like Section 80U of Income Tax Act or state pensions (Odisha, Himachal Pradesh) demand medical certificates, inaccessible to rural patients.
3. Perpetuating Structural Inequalities: SCD largely affects Adivasi and Dalit communities, compounding caste, class, and geographic exclusion with medical under-recognition.
4. Contradiction to Rights-Based Approach: RPWD aimed to move beyond medicalisation towards capabilities approach (Amartya Sen, Martha Nussbaum), yet reliance on biomedical scoring reverts to a narrow, clinical model.

Global & National Perspectives

1. UNCRPD (2006): Defines disability as interaction between impairments and social barriers, not just medical thresholds.
2. South Africa’s disability policies explicitly account for fluctuating conditions like HIV, setting an example India could adapt.
3. WHO (2021): Recommends multi-dimensional assessment frameworks considering social participation, livelihood, and well-being, not just clinical severity.

Policy Imperatives

1. Reform Certification Framework: Move towards a multi-criteria assessment including lived experiences, socioeconomic barriers, and episodic nature of illnesses.
2. Inclusive Quotas: Extend job and education reservations to blood disorders, recognising them as benchmark disabilities.
3. Community-Based Certification: Local health centres and mobile medical units should certify disabilities for rural and tribal patients.
4. Holistic Support Systems: Integrate SCD into Ayushman Bharat, PM-JAY, and state insurance schemes for financial relief.
5. Awareness and Anti-Stigma Programs: Education campaigns to reduce social discrimination, particularly in Adivasi belts.

Conclusion

As Martha Nussbaum notes in Frontiers of Justice, dignity requires capability equality. Unless India redefines disability beyond biomedical scoring, sickle cell patients risk symbolic recognition without substantive justice.