In March 2024, the Indian government issued revised guidelines under the Rights of Persons with Disabilities (RPWD) Act, 2016. These guidelines provide a framework for assessing the extent of disability of people with two copies of the sickle cell gene, or with both sickle cell and beta thalassaemia, or Hb D.
Sickle cell disease (SCD) is a painful, progressive, and disabling blood disorder, disproportionately affecting marginalised communities. Recognition under the Act was expected to provide reservations in the allotment of agricultural land and housing, poverty alleviation and development schemes, and education, work, and healthcare for those with the disease. The RPWD Act, 2016 extends reservations in public sector employment under the 4% quota for persons with vision and hearing loss, locomotor disabilities, and intellectual disabilities. However, individuals with SCD and other blood disorders are not included in the quota. This decision has sparked disappointment and criticism.
The narrow lens of disability
The RPWD Act, 2016, marked a step towards protecting the rights of persons with disabilities, and promoting their full inclusion in society. The law, which aligns with the UN Convention on the Rights of Persons with Disabilities, promises dignity, equality, and non-discrimination. It expanded the legal definition of disability and introduced rights-based protections for persons with ‘benchmark disabilities’. Section 2(r) of the Act states that the term ‘benchmark’ is used to identify individuals with disabilities who meet a certain threshold of impairment, specifically 40% or more. Persons with benchmark disabilities are entitled to free school education as well as reservations in higher educational institutions, development assistance programmes, and government employment.
However, this 40% threshold excludes many individuals with disabilities whose assessed impairment falls below this mark. Community experiences show that the disability percentage is far from an objective measure. Different hospitals, medical boards, and doctors can assign different percentages to the same person, depending on their personal judgment. As a result, disabling conditions that significantly impact an individual’s life may still fail to qualify as a benchmark disability.
SCD is not always visibly disabling, but it is debilitating. Individuals with SCD experience recurrent episodes of intense pain, fatigue, anaemia, organ damage, and frequent hospitalisations, often starting in early childhood. These episodes can disrupt schooling, diminish employment and livelihood opportunities, and drastically reduce life expectancy. Stigma and discrimination compound these barriers, particularly for Adivasi and Dalit communities.
The RPWD Act was intended to move away from a medicalised, narrow understanding of disability that prioritises visible, physical impairment over the chronic, fluctuating, and invisible ones. The continual reliance on biomedical scoring and exclusion of people with SCD from full protections undermines the very purpose of recognising the condition under the Act.
The burden of proof
In India, several schemes provide special benefits to individuals with a certified degree of disability. For instance, Odisha and Himachal Pradesh offer enhanced pension schemes for individuals with severe disabilities. Under Section 80U of the Income Tax Act, 1961, those certified by the authorised medical authority as having a disability are eligible for a flat deduction of ₹75,000 from their total income, increased to ₹1.25 lakh in cases of severe disability. To claim this benefit and many other government schemes, individuals must obtain a disability certificate, issued under Section 58 of the Act.
The major barrier lies in the certification process. A medical authority, including the chief medical officer, evaluates and certifies disability. Diagnosis reports of confirmatory tests must be from a government or standard lab. Further grading of disability beyond the baseline of 40% is based on a scoring system that assigns points to a range of complications, such as pain, blood transfusion requirements, and neurological complications. This system often fails to capture the full extent of the condition’s impact, especially when the symptoms are invisible or episodic. This approach misses the socioeconomic and emotional toll on people with SCD. A young person may miss school due to hospitalisation or lose jobs due to debilitating pain — all without qualifying for a ‘higher’ score. Worse still, the certification process is largely inaccessible for the people who need it most. For Adivasi and Dalit patients in rural or remote areas, arranging diagnostic tests or travelling distances to district hospitals for evaluation can be impossible.
Several reforms are required to ensure the Act lives up to its promise. Extending job reservations to individuals with SCD and related blood disorders would acknowledge their condition as a significant, lifelong disability. Reforming the certification process to account for fluctuating and invisible disabilities would reflect a rights-based lens rather than a purely biomedical one.
Disability is a lived experience, not only shaped by physical health, but also by social exclusion, structural barriers, and policy gaps, and unless India’s recognition of SCD brings real rights and protections, it risks becoming exclusion disguised as inclusion.
Gargi Mishra, Sarojini Nadimpally and Lila Shriram work on public health, gender, disability and sickle cell disease; Ragini De is a freelance writer
Published – September 03, 2025 02:16 am IST
