Systemic barriers to mobility for neuromuscular disease: How wearable tech intersects with healthcare inequities and disability justice
Original framing: “Daily briefing: Wearable robot could help kids with neuromuscular disease stand” — Nature
Disabled adults, particularly those from low-income or minority backgrounds, are systematically excluded from research on neuromuscular diseases, leading to devices designed for the 'ideal' user rather than real-world needs. Women and girls with neuromuscular conditions are underrepresented in clinical trials, despite evidence that their symptoms and progression differ from men. The global south is largely absent from discussions on wearable robotics, despite bearing a disproportionate burden of neuromuscular diseases due to limited healthcare infrastructure.
The wearable robot narrative exemplifies how technological 'solutions' to disability are framed within a neoliberal healthcare system that prioritizes marketable innovations over systemic equity.
Historically, neuromuscular disease research has been shaped by eugenics-era assumptions and profit-driven priorities, excluding disabled adults and global south populations from both funding and device access. Cross-culturally, indigenous and community-based approaches offer more sustainable alternatives to individualistic tech fixes, yet these are sidelined by Western biomedical dominance. The trickster’s lens reveals the absurdity of celebrating a $50,000 robot while ignoring the policy failures that make such devices inaccessible to most. True progress requires reallocating resources to participatory, decolonized research and universal public health coverage, ensuring that mobility solutions are designed by and for the communities they serve.