Context: In 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.
Relevance of the topic:
Prelims: Key facts about Sickle Cell Anaemia; Rights to Persons with Disabilities Act 2016.
Mains: Issues in the Rights of Persons with Disabilities (RPWD) Act, 2016.
The RPWD Act 2016 marked a step towards protecting the rights of persons with disabilities, and promoting their full inclusion in society. The law aligns with the UN Convention on the Rights of Persons with Disabilities and promises dignity, equality, and non-discrimination.
About Rights to Persons with Disabilities Act, 2016
- The Act defines persons with disabilities as a person with physical, intellectual, or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.
- Types of disabilities covered under the Act are increased from 7 to 21. It includes various physical and mental disabilities like acid attack victims, dwarfism and Autism Spectrum Disorder.
- Persons with benchmark disabilities are entitled to free school education up to 18 years of age, reservations in higher educational institutions, development assistance programmes, and government employment.
- Reservation: It mandates a 4% reservation in public employment and 5% reservation in educational institutions for PwD.
- The Act mandates both public and private institutions to make infrastructure accessible and provide ICT consumer products for PwD.
Sickle Cell Anaemia
- It is an inherited or genetic blood disorder that affects haemoglobin, the protein in Red Blood Cells (RBCs) that carries oxygen to all parts of the body.
- Healthy RBCs are soft and round. In SCD, the haemoglobin is abnormal, which causes the RBCs to become hard and sticky and look like a sickle.
- These rigid, sticky cells die early and often get stuck in blood vessels, clogging the flow of blood. As a result, different parts of the body do not get the oxygen they need. This can cause pain and other serious health problems such as infection, acute chest syndrome and stroke.
Treatment:
- It is a lifelong illness. The only cure comes in the form of gene therapy and stem cell transplants, however, both are costly and still in developmental stages.
- Sickle Cell Anaemia Elimination Mission (2023) aims to eliminate sickle cell disease as a public health problem by 2047.
Sickle cell disease (SCD) is a painful, progressive, and disabling blood disorder, disproportionately affecting marginalised communities like Tribals.
Narrow lens of disability in Rights of Persons with Disabilities Act 2016
- Not-inclusive: The Act 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.
- Subjectivity in benchmark disability: The benchmark disability under the Act must meet a certain threshold of impairment, specifically 40% or more. However, different hospitals, medical boards, and doctors can assign different disability percentages to the same person, depending on their personal judgment.
- Certification bottlenecks: A medical authority, including chief medical officer, evaluates and certifies disability. Diagnosis reports of confirmatory tests must be from a government or standard lab. The certification process can be largely inaccessible for Adivasi and Dalit patients in rural or remote areas.
Way Forward
- 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.
- Improve Accessibility: Mobile medical units in tribal and rural areas for on-site certification and treatment.
Disability is not only shaped by physical health, but also by social exclusion, structural barriers, and policy gaps. 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.
Unless India’s recognition of SCD brings real rights and protections, it risks becoming exclusion disguised as inclusion.