Making visible disability the new normal in health professionals
Think back to our professional school graduating classes: how many of our colleagues had a visible disability? For many of us, the answer is likely none, or at most one or two. The concepts behind the movement to promote equity, diversity, and inclusion (EDI) are important and widely promoted; however, it is still unclear whether EDI programs actively and explicitly include visible disabilities or functional differences within this rubric.1 At our childhood-onset disability conferences we meet up with friends and colleagues with disabilities, but this highly selective experience may simply create a false sense of comfort that visible disability in health professionals is all around us.
Not only is there a paucity of data around the number of disabled physicians and trainees globally, but the majority of the data amalgamate disabilities together. The most recent report by Pereira-Lima et al.2 demonstrates that 5.9% of medical students in the US have disabilities, but only a small minority have disabilities that would be considered apparent (i.e. visible to the casual observer). These data corroborate our Canadian medical system experience, where the number of clinicians we know with visible disabilities can be counted on one hand. Although the number of people in medicine who identify as having a disability is slowly rising,2 it appears that the visibility of disability in medical school classes, and subsequently in residency training and practice, has not had proportionate changes.
Why does this matter? Consider at least three important ideas. First, it is essential for the people we serve to be able to see themselves in the environment around them. In promoting women in sport, tennis legend Billie Jean King noted: ‘You have to see it to be it!’. Having the full spectrum of disability representation is essential, because everyone deserves the right to see themselves reflected in their community. Currently, people with disabilities have poorer access to healthcare and medical doctors feel less confident providing equitable care.1, 3 Importantly, evidence suggests that people both perceive and receive better care when served by physicians of similar cultures. These ideas refer specifically to race and ethnicity, but this idea should apply equally to representations of visible disability.4
Second, but just as important, healthcare providers also need to recognize disability as a part of diversity, rather than as an impairment or handicap that we need to prevent or cure. Third, our medical community and society at large need to see people with functional differences being capable – so their perceptions of possibility in the face of difference can be illuminated. This has been illustrated by the huge (and growing) global popularity of the Paralympics, and occasionally in mainstream sports (e.g. the successful Major League Baseball pitcher Jim Abbott was born with only one hand). The ‘exceptions’ need to happen across all areas of society, including for healthcare providers, so they are no longer exceptional.
The reasons for the lack of representation of disability in healthcare professionals are multifactorial, so we need to work together to identify and address ableist practices in recruitment, admission, standardized testing, retention, and promotion of disabled physicians and trainees. This is important not only so aspiring professionals can receive equitable access to training and employment as clinicians; we believe that as a community we are all better for having a diverse workforce, and that must include people with visible and even so-called ‘hard to accommodate’ disabilities.
Finally, it is worth considering the thoughtful words of Meeks and Moreland:5 ‘There is value in the disabled person's dual lived experience as a patient and as a professional that can motivate clinicians and colleagues to be more informed practitioners, the medical profession to be more just, and society to resolve health care disparities.’
In this issue
• A worldwide, multi-expert stakeholder analysis including people with lived experience, clinicians, and researchers results in an updated description of cerebral palsy (CP) in the form of an annotated clinical formulation and a plain-language version.• A systematic review and meta-analysis finds that early magnetic resonance imaging during the preterm period predicts CP better than non-CP motor outcomes.• A scoping review examining involvement of people with lived experience in setting priorities for CP research highlights a gap in representation of the worldwide diversity of CP.• A narrative reviews details shared features and differences in sudden unexpected infant death, sudden unexplained death in childhood, and sudden unexpected death in epilepsy.• An observational study of the natural history of SGCE-associated myoclonus dystonia shows progression of motor impairment and the development of mental health problems.• An open label clinical trial using reverse transcriptase inhibitors in Aicardi-Goutières syndrome in the hope of reducing interferon activation has messages for future targeted treatment trials in rare diseases.• A cross-sectional study of the open access Autism Symptom Dimensions Questionnaire (ASDQ) confirms its validity and suggests that it might be sensitive to change.• Another cross-sectional validation study including young people with disabilities completing the Pediatric Evaluation of Disability Inventory – Patient Reported Outcome (PEDI-PRO) finds that this tool can assess priority self-reported outcomes for young people with developmental disabilities, including autism and intellectual disability.• A qualitative study of experiences of caregivers of autistic children with self-injurious behaviour highlights pervasive impact beyond the child, stigma, and lack of accessible resources.• A cross-sectional study of children born preterm or full term finds that community environment affects physical activity and quality of life, and does so to a similar extent in both groups.• A retrospective observational study of gait in children with bilateral spastic CP who underwent selective dorsal rhizotomy shows improvement distally and deterioration proximally 1 year after the intervention.• Another retrospective observational study of children with bilateral spastic CP who underwent selective dorsal rhizotomy documents reduction in spasticity, and no macroscopic deterioration of muscle morphology.
Open Research
DATA AVAILABILITY STATEMENT
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