My daughter, Eliza, is five years old. She loves purple AND pink, riding horses, and, of course, unicorns. She is the oldest of my three, by one minute over her twin brother, and she was born with spina bifida. She is a five-year-old like any other with the addition of what we like to call “a few extras.” Over the years we have heard all kinds of comments about Eliza. We have been told she is an angel, an inspiration, and a special gift given to us because only we could handle it. We have been asked if she is a burden, or what is “wrong” with her. We have heard these words in all avenues, including from medical professionals. After hearing people grasping for the appropriate thing to say and coming up short, it became apparent to me that we, as a society in general, and we, in medicine in particular, do not feel comfortable with disability.
In Medicine we have the best of intentions, but we often don’t have the experience or the training to understand disability, the culture, or the language. I never got any training on caring for people with disabilities during medical school or residency. This is a neglected topic in Emergency Medicine broadly, and more specifically it is frequently left out of conversations about diversity. Obviously, I care about my daughter, and I care about the quality of care we are providing to all people with disabilities. I know that we can do better.
In order to do better, we need to first think about our paradigm around disability. What is disability, and how do we approach it or understand it? The World Health Organization states: “Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives” (1). This definition is helpful because it emphasizes the importance of the society in which we live as a contributing factor to the experience of disability.
Another name for this framework is the Social Model of Disability, which states that disability is caused by the way society is organized, rather than by an individual’s impairments or differences. In contrast, the Medical Model of Disability, which is the one we are more often familiar with, posits that people are disabled by their impairments and differences and that those differences should be “fixed” by medical interventions. It looks at what is “wrong” with the person, and not what the person needs. If we utilize the social model, we open our eyes to thinking about our society, our structures and our systems, and how they can be modified to be more inclusive for people with disabilities.
Why does this matter? We as medical professionals are operating within a set of cultural values that discriminate in favor of able-bodied people. This is ableism, and it is all around us. You can see it on Twitter by searching for #ableismexists. Peter Dinklage, the star of Game of Thrones, has described jokes about people with dwarfism as “one of the last bastions of acceptable prejudice.” President Trump made fun of a reporter with a disability to little consequence. After Stephen Hawking’s death, the articles published about his life and his work were classic examples of ableism.
Disability is common. It affects approximately 15% of the world’s population, or over one billion people (2). Our ableism, bias, and assumptions all have a real and lasting impact on this substantial patient population. Patients with disabilities experience poor access to care, and poor health outcomes when compared with the general population (3,4). Many argue that patients with disabilities should be considered an underrepresented group when it comes to healthcare (5).
Moreover, studies also show a significant discrepancy between patients and physicians when it comes to quality of life assessments (6). We as physicians make judgments on the quality of life of our patients with disabilities using the medical model, thinking about their impairments and differences and focusing on their time in the hospital, rather than thinking about the whole picture, with the social model as our lens. Quality of life is not determined in the hospital; quality of life is determined in the home
So how do we move forward? What can we do to make real and lasting change in the experience for patients with disabilities in the healthcare system? We have a long way to go, but we can take steps in the right direction.
First, change your mindset. Adopt the social model of disability. Learn about disability culture and values, and think about how you can help people with disabilities be more independent and equal in society.
Second, change your language. Much of the language we currently use regarding disability is fraught with negativity and bias. Words have power, and by paying attention to our language we can show our patients with disabilities that we value them. Traditional teaching advocates using person-first language when speaking about disability. Using person-first language you would state that my daughter is a child with a disability, not a disabled child. However, it is worth noting that many in the disability community feel that their disability is an inextricable part of who they are, and for that reason prefer identity-first language. Using identity-first language you would state that a child is autistic, rather than the child has autism. When in doubt, it is best to ask the person which language they prefer. For other terms, there is consensus that the language we currently use needs to change. Eliza has spina bifida; she does not suffer from spina bifida. She uses an accessible restroom; she does not use a handicapped restroom. She uses a wheelchair; she is not wheelchair-bound. Her wheelchair is an important tool that enables her freedom and independence.
Finally, include disability in the conversation. Don’t talk about diversity in your department, whether in your patient population or in your staff, without including disability. Advocate for patients with disabilities in your department and your community, whether that means ensuring access to sign language interpreters or ensuring transport after hours for wheelchair users. Advocate for physicians with disabilities to be included within Emergency Medicine. Educate yourself, your residents, your medical students, and your nursing staff so that your patients with disabilities can feel confident that they are being cared for by a community of healthcare providers who are informed and want to provide equitable care.
When you know better, you do better. Eliza is counting on us.
Watch the full FIX 18 talk below!
- World Health Organization.
- World Health Organization World Report on Disabilities.
- Diab ME, Johnston MV. Relationships between level of disability and receipt of preventive health services. Arch Phys Med Rehabil. 2004;85(5):749-757. PMID 15129399
- Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90(6):955-961. PMID 10846515
- Krahn GL, Walker DK, Correa-De-Aruajo R. Persons with disabilities as an unrecognized health disparity population. Am J Public Health. 2015;105(s2):S198-S206. PMID 25689212
- Carr AJ, Higginson IJ. Are quality of life measures patient centred? BMJ : British Medical Journal. 2001;322(7298):1357-1360. PMID 11387189