Rights on Paper, Barriers in Reality: A Disability Advocacy Perspective

Lived Experience, Rights, and Responsibility

I am a person with disability (PwD) diagnosed with Muscular Dystrophy, a rare neuromuscular genetic disorder classified under locomotor disability as per the Rights of Persons with Disabilities (RPwD) Act, 2016.

Muscular dystrophy is a progressive condition caused by the absence or dysfunction of essential muscle proteins, leading to muscle weakness and functional limitations. Living with a genetic condition from early childhood has shaped not only my physical journey, but also my academic path, worldview, and long-term purpose.

Rather than defining limitations, this experience has strengthened my resolve to pursue higher education in life sciences and contribute meaningfully to cure-oriented research and inclusive systems.

Disability & Education: Lived Reality vs Policy

From schooling to higher education, my journey has consistently highlighted the gap between disability rights on paper and their implementation in reality.

Despite constitutional guarantees and policy frameworks, many persons with disabilities continue to face systemic barriers in education, research, and professional environments.

Common Barriers Include:

• Lack of physical accessibility in schools, colleges, and laboratories

• Inadequate institutional preparedness for progressive disabilities

• Limited access to inclusive transport and infrastructure

• Social bias and discouragement in pursuing research careers

• One-size-fits-all disability accommodations

These challenges reflect systemic shortcomings, not individual incapacity—underscoring the need for personalized, needs-based accommodations.

Understanding Disability: Beyond Broad Labels

Disability is not a uniform experience.

Even within broad categories such as locomotor, visual, hearing, or intellectual disability, individual conditions vary significantly in:

• Functional needs

• Progression patterns

• Required accommodations

For example, conditions like muscular dystrophy, cerebral palsy, dwarfism, or post-polio syndrome require distinct and evolving support mechanisms.

Effective inclusion must:

• Recognize disease-specific needs

• Adapt policies dynamically

• Move beyond checkbox compliance

• Shift from charity-based thinking to rights-based dignity

Legal Framework & Fundamental Rights of PwDs

India has a strong legal foundation protecting the rights of persons with disabilities.

Constitutional Principles:

• Article 14 – Equality before law

• Article 15 – Protection against discrimination

• Article 19 – Freedom of movement, expression, and choice

• Article 21 – Right to life with dignity

• Article 41 – Right to education, work, and public assistance

RPwD Act, 2016:

• Expands recognized disability categories

• Mandates accessibility in infrastructure, transport, and digital services

• Provides reservation in education and employment

• Ensures healthcare, rehabilitation, and social security

• Introduces accountability for discrimination

Despite these provisions, implementation remains inconsistent, particularly at institutional and grassroots levels.

Advocacy, Awareness & Preventive Health

My work in disability advocacy focuses on:

• Promoting empathy over sympathy

• Advocating for accessibility, inclusion, and reasonable accommodation

• Raising awareness about rare and progressive genetic disorders

• Encouraging early diagnosis and preventive health screening

• Supporting informed genetic counselling and awareness

Preventive healthcare and genetic awareness play a critical role in improving long-term quality of life—not only for individuals, but for families and healthcare systems.

Vision for an Inclusive Future

True inclusion requires more than policy documents.

It demands:

• Ground-level implementation of accessibility standards

• Sensitization of educators, administrators, and healthcare professionals

• Collaboration between government, academia, NGOs, and civil society

• Adoption of universal design principles across public and private spaces

An inclusive society enables persons with disabilities to live with autonomy, dignity, and equal opportunity—not as exceptions, but as participants.

Closing Perspective

Disability is not a limitation of potential—it is a test of societal preparedness.

Through education, research, advocacy, and science communication, I aim to contribute to a more inclusive, empathetic, and accessible ecosystem—particularly in education, healthcare, and scientific research.