In the vast landscape of health research, PubMed's specialized queries serve as invaluable tools, offering master search strategies for common and complex health topics. However, one significant gap exists – there is no dedicated PubMed special query for disability research, a topic of undeniable importance and complexity.
This omission raises concerns about the accessibility and visibility of disability-related content in the scholarly record. While specific databases like NARIC's REHABDATA cater to disability research, PubMed remains a primary entry point for the global research community. Presently, disability-related terms are dispersed throughout PubMed's Medical Subject Heading (MeSH) trees, lacking cohesive cross-references for seamless discovery. This dispersion results in a heavy reliance on the unstructured language chosen by authors to describe their research, fostering a lack of consensus and consistency in professional terms, categories, and definitions related to disability.
Recognizing this gap, we, as research partners with the University of Michigan's Center for Disability Health and Wellness, embarked on a mission to address this issue. The journey has proven to be both challenging and enlightening, revealing a multitude of hurdles in the process.
Disability: A Complex Spectrum At the project's inception, we turned to the extensive PubMed search filter for cancer, a field with over 1,200 search statements, for inspiration. However, we soon realized that disability, encompassing all facets of life, is inherently more expansive than cancer. Defining disability becomes a daunting task, considering factors such as functionality, diagnoses, interventions, needs, outcomes, impacts, environments, and more. The lack of consensus on professional terms, coupled with evolving perspectives that intertwine ableism with various forms of discrimination, adds layers of complexity.
The Moving Target of Disability Disability's dynamic nature further complicates matters, evolving rapidly in response to changing societal perspectives. This evolution reveals profound connections between ableism and other forms of discrimination, impacting diverse aspects of life, from police violence to climate change and disaster planning. Additionally, disability language may vary across countries and cultures.
Drowning in Definitions Our efforts to pinpoint a clear definition of disability revealed numerous interpretations but no consensus. Attempts to categorize disabilities into distinct types—physical, sensory, developmental, learning, cognitive, psychological, behavioral, emotional—proved challenging, as these categories often blend and blur. The absence of a unified language across experts and authorities exacerbates the difficulty, leading to debates on whether conditions like Parkinson's disease or multiple sclerosis should be classified as physical or cognitive disabilities.
The Overwhelming Language Challenge The abundance of disability definitions brings us face-to-face with the challenge of navigating a sea of terms, each with its unique connotations. Language associated with disability is in a constant state of flux, influenced by cultural perceptions and laden with stigma. Efforts to combat stigmatization often result in the adoption of new terms, which, in turn, may face resistance and stigma.
Navigating Stigmatized Language in Research Librarians and informationists encounter the delicate task of constructing search strategies for topics involving historically divisive concepts. In evidence synthesis methods like systematic reviews, the inclusion of antiquated, non-standard, exclusionary, and offensive terms may be necessary to ensure comprehensive coverage of the literature. Balancing the need for inclusivity with the potential impact of offensive language on readers requires careful consideration and framing in research methods.
The Burden of Technoableism These challenges underscore the impact of historical systems and technologies that shape our approach to disability research. The struggle to shift archaic infrastructures becomes evident, exemplified by decisions such as the NIMHD's exclusion of persons with disabilities as a health disparity population. This decision, rooted in the absence of a consensus definition of disability, perpetuates a cycle of harm.
In conclusion, our exploration of disability research on PubMed illuminates the intricate web of challenges faced by researchers, policymakers, and stakeholders. Addressing these hurdles is not only essential for enhancing the inclusivity of disability-related literature but also for fostering a more comprehensive and nuanced understanding of this complex and evolving field.
