Context:

• The Supreme Court has issued a notice to the Central Government on a petition demanding explicit recognition of haemophilia under the Rights of Persons with Disabilities Act 2016 (RPwD Act).
• Despite being already listed within the Act’s 21 recognised disabilities, individuals with haemophilia continue to be denied reservation, educational support, and welfare entitlements.
• The case highlights a deeper structural gap between legal recognition and actual inclusion in India’s disability rights regime.

Evolution of Disability Law in India - From the 1995 Act to the 2016 RPwD Act:

• Persons with Disabilities Act, 1995:
  • It was enacted after India signed the “Proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region”.
  • Governed by a medicalised view of disability, it recognised only 7 disabilities.
• Rights of Persons with Disabilities Act, 2016:
  • It was introduced after India ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007.
  • Major reforms:
    • Shift from medical model to socio-medical model of disability.
    • Expansion from 7 to 21
    • Introduction of a rights-based framework ensuring equality, dignity, autonomy, and participation.

Scope of Disabilities under RPwD Act, 2016:

• Sensory and physical disabilities: Blindness, low vision, hearing impairment, locomotor disability, acid attack victims, dwarfism, cerebral palsy, leprosy-cured persons, speech and language disability.
• Intellectual and psychosocial disabilities: Intellectual disability, mental illness, autism spectrum disorder, specific learning disabilities.
• Neurological and neuromuscular conditions: Multiple sclerosis, Parkinson’s disease, muscular dystrophy, chronic neurological disorders.
• Blood-related and multiple disabilities:
  • Thalassaemia, haemophilia, sickle cell disease, multiple disabilities including deaf-blindness.
  • Despite this explicit statutory recognition, haemophilia patients continue to face exclusion from benefits.

Rights vs. Entitlements - The Core Problem:

• Rights available to all PwDs:
  • Equality and non-discrimination
  • Protection from abuse/violence
  • Right to live in the community
  • Inclusive education
  • Accessible voting
  • Access to justice
• Entitlements limited only to benchmark disabilities (40% or more of a specified disability):
  • 5% reservation in higher education
  • 4% reservation in government jobs
  • Free education (6–18 years)
• But, the 4% job reservation applies only to five specific categories, excluding haemophilia and similar conditions. These categories largely mirror the old 7 disabilities of the 1995 Act.

 Structural Issues and Ongoing Exclusion:

• Visible vs invisible disabilities: Reservation prioritises disabilities that are outwardly visible. Conditions like haemophilia, sickle cell disease, multiple sclerosis, and epilepsy remain excluded despite severe functional limitations.
• Legacy of the 1995 law: The reservation matrix still reflects the 1995 Act’s narrow categories, undermining the expanded intent of the 2016 law.
• Double disadvantage in employment: Persons with omitted disabilities face no reservation benefits, and rejection as “medically unfit” in open competition, resulting in systemic exclusion from employment.

Why the Haemophilia Litigation Matters?

• The case reveals a design flaw in India’s disability rights architecture - despite such explicit statutory recognition, persons with rare blood disorders continue to face exclusion.
• The petition challenges the structural mismatch between - expanded disability recognition vs. static entitlements and reservation categories.
• A favourable verdict could -
  • Extend employment/education entitlements to blood-disorder patients
  • Realign the RPwD Act with its rights-based intent
  • Strengthen social justice, equality, and non-discrimination principles

Challenges:

• Inadequate implementation of the expanded disability list: Despite legal recognition, institutional frameworks still follow legacy categories.
• Lack of awareness among authorities: Recruiting bodies and education authorities hesitate to classify haemophilia patients as eligible for benefits.
• Medical fitness norms: Rigid medical standards often invalidate applications from persons with blood disorders.
• Absence of updated reservation guidelines: The reservation matrix has not evolved with the expanded definitions in the 2016 Act.
• Social barriers and stigma: Stereotypes about “invisible” conditions limit societal and institutional acceptance.

Way Forward:

• Update reservation categories: Revise Schedule 1 and job quota notifications to ensure all 21 disabilities, including haemophilia, fall under affirmative action schemes.
• Alignment with UNCRPD principles: Policies must foreground accessibility, reasonable accommodation, dignity, and participation.
• Sensitisation of recruiting agencies (e.g., UPSC, SSC): Clear instructions on recognising benchmark disabilities across all categories.
• Standardised medical assessment: Ensure uniform guidelines to evaluate haemophilia and other rare disorders for benchmark disability certificates.
• Strengthen monitoring mechanisms: Empower the Chief Commissioner for PwDs and State Commissioners to ensure compliance.

Conclusion:

• The haemophilia case exposes a critical gap in India’s disability governance: recognition without entitlement undermines true inclusion.
• The RPwD Act’s progressive rights-based vision remains incomplete unless all disabilities—visible or invisible—receive equal access to employment, education, and social protection.
• Addressing the structural misalignment between the law’s intent and its implementation is essential for realising constitutional guarantees of equality, dignity, and social justice for persons with disabilities.