Striving to remove barriers that prevent us from building Vibrant, Diverse, Inclusive, Accessible Communities!



Navigating the Clash Between Deafness, Gene Therapy, and Social Justice

Frequently, there's widespread enthusiasm for miracle cures benefiting People with Disabilities, generating significant support through platforms like GoFundMe and social media campaigns. However, this enthusiasm often neglects the crucial responsibility of removing barriers, a key element in building vibrant communities. Essential initiatives, such as providing Sign Language Interpreters, Braille Materials, and Accessible Web Pages, actively contribute to the construction of inclusive and vibrant communities.

A recent article on gene therapy for deafness sheds light on this point as it discusses claims of advancements at the Children’s Hospital of Philadelphia (CHOP). However, beneath the surface of apparent progress lies a contentious debate rooted in the contrasting paradigms of the social and medical models of disability.

At its core, the medical model perceives disability as an individual problem necessitating medical intervention. In this context, gene therapy is presented as a beacon of hope, promising substantial improvements in hearing ability for select patients. The narrative champions gene therapy as a marvel of modern medicine, boasting remarkable success stories like that of an 11-year-old deaf boy experiencing partial hearing restoration in one ear. Such achievements fuel optimism about the transformative potential of medical interventions for individuals with deafness.  

Advocating the likelihood of significant advancements in hearing capability for specific patients demands a critical examination, considering the uncertainties and challenges surrounding such assertions.  Partial hearing in one ear at a cost of millions of dollars is not exactly the miracle they claim!

Yet, amid the celebratory tone surrounding these advancements, the financial realities cast a shadow of doubt. With costs soaring beyond $1 million per patient, the affordability and accessibility of gene therapy come into question. Such astronomical figures raise eyebrows regarding healthcare resource allocation and the prioritization of high-tech interventions over broader societal problems.

In stark contrast, proponents of the social model of disability challenge the prevailing narrative. They argue that disability is not merely an individual problem but a consequence of societal barriers that prevent full participation and inclusivity. From this perspective, the focus shifts from medical interventions to dismantling systemic inequities and fostering accessibility. Advocates advocate for investments in social infrastructure, such as comprehensive sign-language education and robust support services, to eradicate barriers and empower individuals with disabilities.

The clash between the medical and social models of disability underscores the inherent tensions within discussions surrounding gene therapy for deafness. While the medical model champions technological breakthroughs and individualized treatments, the social model insists on broader societal responsibilities and the imperative of inclusive practices and removing barriers. The staggering costs associated with gene therapy expose fault lines in healthcare equity, shedding light on disparities in access to cutting-edge medical innovations.

In essence, the discourse prompted by these developments demands critical examination and robust pushback. While gene therapy represents a significant scientific leap forward, its lofty price tag and limited accessibility underscore systemic inequities within healthcare systems. As the debate rages on, it transcends the realm of medical advancements to confront broader societal problems and advocate for a more just, equitable, and inclusive future for People with Disabilities. This necessitates a heightened focus on removing barriers, essential for fostering inclusive communities. Vital initiatives like providing Sign Language Interpreters, Braille Materials, and Accessible Web Pages directly contribute to community-building endeavors, ensuring equitable participation for People with Disabilities.

Read Gene therapy at CHOP allowed a deaf boy to hear. But some deaf people object to the treatment.

Striving to remove barriers that prevent us from building a Diverse, Vibrant, Inclusive, Accessible Community!

Share or Print with: