To consider the whole elephant: Finding our blind spots in caring for people with disabilities

Abstract

Equity, inclusion, ableism – these terms populate our professional lexicon. What do they mean to us as individual practitioners? The National Council on Disability identifies individuals with disabilities as the largest unrecognized minority group in the USA (https://www.ncd.gov/assets/uploads/reports/2022/ncd_health_equity_framework.pdf). Ames et al. recently reported that caregivers of children with medical complexity routinely experience disability-based discrimination in healthcare settings.¹ This impacts trust and therapeutic relationships with providers.² They point to lack of access to care, substandard care, and dehumanization, driven by incomplete clinician knowledge, apparent apathy, and misplaced assumptions. These observations make us uncomfortable in our professional roles. Ableism surreptitiously creeps into our blind spots. It is hard to fathom that we might harbor any seeds of discrimination.

Consider the parable about six blind men who describe an elephant by touching it, each coming to vastly different conclusions based on what is within their reach. (‘It's like a tree,’ about the trunk. ‘It's like a wall,’ about the body. ‘It's like a fan,’ describing the ear.) This parable reminds us that our individual perspectives may have limitations despite their accuracy, and that the synthesis of multiple experiences leads to more robust conclusions.

Provider and patient/caregiver perspectives can represent different parts of the elephant. As providers, we all have our focus: a spastic limb, a curved spine, impaired mobility or communication, suboptimal nutrition, uncontrolled seizures. These are important health conditions, critical in their impact on function and participation. Yet sometimes our laser-like expertise obscures the bigger picture. Have we addressed what the child and family need?

Take this example. A child with bilateral spastic cerebral palsy has significant upper extremity contractures. The provider recognizes the risks of surgery: anesthesia, pain, prolonged recovery without substantial increase in function or independence. However, the family perceives value in even a modicum of improved joint mobility. The surgeon hears this, sees the different parts of the elephant, and they proceed. Months later, the family reports a transformative outcome. The child is now able to cradle a basket of school supplies in his arms. His classmates engage with him as they reach into the basket daily, supporting the participation and shared classroom experiences of students of all abilities.

The call to action is this: to be honest with ourselves. We likely all agree that quality of life should drive care, yet do we always invest the time to explore it with our patients and families? How do we show up for a child with disabilities and their parents when we are short on time, stressed, and distracted by competing responsibilities? Is there a particular child or family that we would prefer to avoid on our busiest of days? How are we role models of inclusive and unbiased professionalism for our mentees? When we are feeling really brave, we can ask our trusted colleagues for feedback. What do they see?

Moving the field forward – promoting equity, inclusion, and reducing ableism – mandates this self-reflection, role modeling, and education. Fortunately, topics related to disability appear more commonly in training curriculums and frameworks for addressing disparities are emerging.^3,4 Through exposure and discourse, we can raise awareness as well as comfort in providing better care.

Exploring our blind spots is a goal that can be addressed at the American Academy for Cerebral Palsy and Developmental Medicine 78th Annual Meeting in Quebec City, from October 23 to 26, 2024, with the theme of ‘Translating Discovery’. Maintaining a sense of ‘why’ is critical to the evolution of innovative ideas: why are novel treatments or surveillance guidelines important? To whom? Are they accessible? Do they make meaningful differences? The meeting will encourage all of us to consider the whole elephant.