Challenges in Recognizing Sickle Cell Disease Under the RPWD Act 2016
The Indian government's revised guidelines for assessing disabilities under the Rights of Persons with Disabilities (RPWD) Act, 2016, face criticism for their medicalized approach. Sickle Cell Disease (SCD) and Thalassemia are recognized, but 'benchmark disability' status requires a 40% impairment threshold. This threshold is difficult to quantify for SCD, which involves fluctuating, invisible symptoms like intense pain and organ damage. The article argues that the current scoring system fails to capture the socioeconomic impact on marginalized communities, particularly Adivasi and Dalit populations, who are disproportionately affected.
Key Points
- The 40% disability threshold excludes many SCD patients from reservations in education and employment.
- SCD is a painful, progressive blood disorder that is not always 'visibly' disabling but is debilitating.
- A rights-based approach is needed to move beyond biomedical scoring to include social exclusion and structural barriers.
- Certification processes are often inaccessible to rural and marginalized patients due to diagnostic costs.
Exam Facts
- The Rights of Persons with Disabilities (RPWD) Act was passed in 2016.
- Section 2(r) of the Act defines 'benchmark disabilities' as having at least 40% of a specified disability.
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