‘Inclusion is not a privilege, it is a right’

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Down syndrome is one of the most widely recognised genetic conditions worldwide, yet misconceptions and barriers persist, preventing true inclusion. In India and across South Asia, social attitudes, systemic gaps in healthcare and limited inclusive education continue to pose significant challenges for individuals with Down syndrome and their families. While medical advancements have improved life expectancy and quality of life, social integration remains an uphill battle. The time has come to move beyond outdated models of care and embrace an inclusive future that recognises the abilities and rights of individuals with Down syndrome.

Mind matters

Today, on Down Syndrome Day, I reflect on how disability has historically been viewed through the lens of the Religious Theory Model, where families were blamed, and disability was seen as a form of divine punishment associated with sin, demons, or bad luck. The Medical Model, which focuses solely on diagnosis, treatment and impairment, viewed individuals with disabilities as "problems" that needed to be "fixed" rather than as people deserving of full participation in society. Similarly, the Charity Model portrayed people with disabilities as passive recipients of help, reinforcing dependency rather than empowerment. However, ways of thinking about disability have shifted. The Social Model of Disability, a more progressive approach, emphasises the role of society in creating barriers to inclusion. Instead of asking, "What is wrong with the individual?", we must ask, "What is wrong with our social structures that prevent their inclusion?" The true obstacles are not genetic conditions but rather the lack of accessible schools, employment opportunities, and public spaces.

School access

Education is one of the most powerful tools for fostering inclusion. However, children with Down syndrome in India are often denied access to mainstream schools due to misconceptions about their learning abilities. Traditional education systems fail to accommodate diverse learning needs, resulting in segregation or exclusion from classrooms. Evidence shows that children with Down syndrome thrive in inclusive environments where they learn alongside their peers. Inclusive education benefits all children, fostering empathy, collaboration, and diversity. Schools must implement flexible teaching strategies, provide teacher training, and ensure access to assistive technology and individualised support.

Health focus

Despite significant advancements in medical care, individuals with Down syndrome face challenges in accessing healthcare. Many healthcare providers are inadequately trained to address their unique needs, leading to misdiagnoses or substandard care. In South Asia, where healthcare inequities are already pronounced, these challenges are even greater. The World Health Organisation's (WHO) South-East Asia Regional Strategy for Primary Health Care (2022-2030) emphasises the need for inclusive healthcare services. Governments must prioritise training healthcare professionals, ensuring early intervention programs, and implementing community-based rehabilitation (CBR) models that support families at the grassroots level.

Work, please

Employment is a critical aspect of inclusion, yet individuals with Down syndrome often struggle to find opportunities. Societal biases assume that they are incapable of contributing to the workforce, leading to their exclusion. However, global examples have shown that with appropriate support, individuals with Down syndrome can excel in various industries, from hospitality to administration and creative fields. Businesses and policymakers must work together to create inclusive employment policies that provide reasonable accommodations, job training, and support networks. Economic inclusion is not just a social responsibility but also an opportunity for companies to embrace a diverse and dedicated workforce.

Change now

The inclusion of individuals with Down syndrome is not just a matter of charity or goodwill, it is a fundamental human right. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) mandates equal access to education, healthcare, and employment for all individuals with disabilities. Countries that have ratified the CRPD, including India, must ensure these rights are upheld through policy changes and systemic reforms.

While policies and services are crucial, changing societal attitudes is as important. Families, educators, employers, and communities must challenge stereotypes and create environments that celebrate neurodiversity. Media representation, public awareness campaigns, and advocacy by those with Down syndrome play a crucial role in shifting narratives from pity to empowerment. This day let us spread the message that inclusion is not a privilege; it is a right. We need to create a world where people with Down syndrome are not just accepted but are ‘celebrated' for their unique contributions.

The columnist is the founder-president and chairperson of ADAPT, formerly The Spastics Society of India