Nothing About Us Without Us: Centering Voices of Children and Youth With Disabilities

“Nothing about us without us” has been the rallying cry of the disability community for generations. Rooted in a legacy of advocacy, the pursuit of civil rights and an ongoing movement toward disability justice, this phrase reminds us of the necessity of centering those living with disabilities and their experiences.1,2 It allows the reality of the lives of people with disabilities to take the forefront, rather than the misconceptions and assumptions that are all too common. “Nothing about us without us” as a practice spurs the creation of systems, policies, and beliefs that are rooted in lived experience and better serve people’s actual needs.1,2 To our knowledge, the authors of Youth With Medical Complexity Perceive Disability Discrimination and Disability-Affirming Care are the first in the academic pediatric literature to interview young people with medical complexity themselves,3 truly enacting this mantra. The authors invited young people to share their lived experiences—both positive and negative—within health care settings, as well as comment on what they view as the path forward for creating more disability-affirming spaces in health care. The participants highlight how limited clinician knowledge of disability may truly be, leading to uncertainty about how to provide care and communicate effectively with patients and families.3Clinicians often make assumptions and may seem uninterested in the patient, their perspective, or learning how to support them. Much of what these young people shared is echoed in past caregiver or adults with disabilities’ studies, demonstrating the pervasiveness of ableism—misconceptions about and discrimination toward people with disabilities—in medicine.4,5 As people with disabilities ourselves, we are grateful to this team for their scholarship and the opportunity created for young people with disabilities to share their wisdom. The lived experience of these children and youth with disabilities (CYWD) resonated deeply with our experience and we hope that this study serves as a catalyst for change. To address ableism and respond to the important questions raised in this article, there are 3 key areas for action and solidarity: physician education, disability representation, and elevating the voices of CYWD.Physicians and health care workers have reported feeling unprepared to care for people with disabilities, and many do not welcome people with disabilities into their clinical practice.5,6 There are misconceptions regarding life with a disability, with physicians often believing that disability impedes quality of life indiscriminately.5,7 These beliefs and biases can translate to decreased clinical care quality and even impact decision making, ultimately leading to discrimination.4,5,8 As shown in Table 2 by Kimmel et al, participants in this study describe drivers of discrimination as 1) clinician lack of knowledge, 2) clinician apathy, and 3) clinician assumptions (about quality of life and/or treatment decisions).3 These findings mirror the experience of caregivers of young people with disabilities in a study done by study by Ames and colleagues.8 Both studies describe the manifestations of discrimination, including substandard care, dehumanization, limited accessibility in care, and poor well-being for CYWD and their families.3,7 Health care outcomes for people with disabilities are indeed impacted by these harmful beliefs and systemic lack of preparedness, with lower rates of vaccinations,9 preventive screenings,10,11 and a higher burden of chronic disease among this population.12Improving the preparedness of our clinician workforce is critical for improving the experiences and outcomes of our disabled community.13 Medical training must include not only clinical training on disability but also foster an understanding of disability culture and identity. We must invite people with disabilities themselves to continue sharing their experiences, enabling us to adapt to their needs and dispel myths of disability equating to burden, limited quality of life, or tragedy.5–7,13 Indeed, the participants in the Kimmel et al study highlight manifestations of disability-affirming health care, as shown in Table 3 from Kimmel et al, and the core components of a disability curriculum, as shown in Table 4 from Kimmel et al.3 These recommendations include fostering clinician openness and curiosity and teaching about the diversity of the disability community, varied preferences within this population, aspects of disability identity, and how to collaboratively care for patients with disabilities across teams.3 They remind us of the importance of extending disability education beyond clinical decision making to best support patients with disabilities.3,14 Their wise recommendations, if enacted, would improve care for all patients. Their recommendations reiterate “nothing about us without us,” calling clinicians to center the humanity of their patients, understand their preferences, and obtain consent at each step.3Physicians with disabilities and other health care professionals can play an important role in countering medical ableism by sharing our disability experience, recommending resources for learning more about the disability community, and calling out harms that are witnessed. It has been posited that disability-concordant care—provided by a doctor with a disability to a patient with a disability—may improve the experiences of patients with disabilities.15 Much of what has been suggested about the impact of disability-concordant care echoes what participants in this study describe as the manifestations of disability-affirming health care, as described in Table 3 from Kimmel et al.3 The number of medical trainees with disabilities has increased significantly; however, this population still reports significant barriers in training, including within pediatrics. Examples include unclear disability policies and processes for obtaining accommodations,13 limited access to trained disability resource professionals,16 and disability-related stigma and bias.17 Working toward a more disability-inclusive training and practice environment can expand our clinical workforce to better resemble the population it serves. Not only may this allow for greater disability-concordant care, but a medical system that is well-prepared—physically and attitudinally—to welcome providers with disabilities will naturally be more welcoming to patients with disabilities. Educators and health care leaders can embody “nothing about us without us” by welcoming more people with disabilities into all levels of health professions.13,16,17In addition to addressing gaps in the workforce and education, including the voices of children, youth and adults with disabilities in developing models of care across the lifespan should not be exceptional, but the norm. Derived from their qualitative analysis of CYWD’s lived experiences, the authors suggest a conceptual framework for understanding disability-based discrimination in health care (Figure 1 from Kimmel et al).3 This is an important tool for health care systems to begin to understand the experiences and care gaps of people with disabilities. We would add that beyond merely providing feedback, it is important to invite people with disabilities across the lifespan to be active co-designers of care models. Although many systems have parent or patient advisory boards, people with disabilities, including CYWD, are often excluded from participating, especially those with cognitive/intellectual disabilities, communication disabilities, and complex disabilities.17 The genuine practice of “nothing about us without us” requires the co-creation of health care systems, informed by those who will be most impacted.A particularly critical time to elevate the voices of CYWD, which is highlighted in the accompanying article, is during their transition to adulthood. Health care transitions are important times to promote patient autonomy and preparedness, connect to resources, identify patient-led goals, and facilitate continued access to care, including both insurance and appropriate adult providers.18,19 These transitions are intentional, collaborative processes—notably, not only a handoff to an adult provider.19 Although all youth should have a supportive health care transition, these processes are particularly crucial for young people with complex health care needs or disabilities. Training on effective health care transitions is often minimal and focused primarily on pediatricians, leaving the adult providers who will receive these patients without an understanding of how to continue supporting the patients’ needs and goals.20 All providers should be prepared to support health care transitions and hold a basic understanding of relevant topics such as transition readiness assessments, insurance, community-based services, and supported decision making.18–20 In addition, transition providers have a unique call to promote disability-affirming care across the lifespan and help end disability discrimination described in the accompanying study. Anti-ableism training and inclusion of young adults with disabilities and their caregivers should be part of any transitional care model.3,13,18–20Every health care professional can put “nothing about us without us” into practice. The authors of Youth With Medical Complexity Perceive Disability Discrimination and Disability-Affirming Care have taken an important first step in elevating the voices of CYWD and medical complexity. Readers can join the journey toward disability-affirming practice in medicine by advocating for disability centered education across the medical education spectrum, not merely including “disability pathology” but centering the voices, culture, and lived experience of people with disabilities. Likewise, continued work is needed to invite more people with disabilities into health professions. Finally, to truly elevate the voices and respond to the lived experience of CYWD shared in this article, models of disability-affirming care across the lifespan (including transition for young adults) must be developed, with people with disabilities as our co-designers and our most important teachers. By sharing “I found that if they really listen, they realize ‘oh this traditional solution might not be the best answer. Let’s try and figure out something else,’”3 the CYWD in this study remind us that collaboration, listening, and creativity can be the keys to unlocking a disability-inclusive future.As physicians with disabilities who were once youth with disabilities, we would like to thank the authors for this important landmark study. We would also like to thank the editorial board of Hospital Pediatrics for this opportunity to write this commentary on behalf of our community. These actions embody solidarity and putting “Nothing about us without us” into practice.