Sickle Cell Disease and Disability Rights: The Gap Between Legal Recognition and Real Inclusion
UPSC Relevance
Prelims: Social Justice (Rights of Persons with Disabilities, Key Legislations - RPWD Act 2016); General Science (Health - Sickle Cell Disease); Welfare of vulnerable sections.
Mains:
General Studies Paper 1 (Society): Social empowerment.
General Studies Paper 2 (Social Justice & Governance): Welfare schemes for vulnerable sections of the population; Mechanisms, laws, institutions and Bodies constituted for the protection and betterment of these vulnerable sections; Issues relating to Health.
Essay: Topics on Social Justice, Inclusion, and Health.
Key Highlights from the News
Rights of Persons with Disabilities (RPWD) Act, 2016 recognizes Sickle Cell Disease (SCD) as a disability, yet those with the condition are excluded from the 4% reservation quota in government jobs.
This highlights a significant gap between legal recognition vs. real inclusion.
For a disability to receive key benefits like reservation, it must be certified as a "benchmark disability" of 40% or more. This 40% threshold is often arbitrary and insufficient to measure the real difficulties of conditions like SCD.
The current medical scoring system does not fully account for the real difficulties of invisible disabilities like SCD, which are not outwardly apparent but significantly impact life.
The complex certification process for obtaining a disability certificate is inaccessible, especially for rural and tribal communities.
The article calls for the inclusion of SCD and similar blood disorders in job reservations, and for the certification process to adopt a rights-based lens instead of merely a medical perspective.
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