Three Things Clinicians Should Know About Disability – by Joel Michael Reynolds, PhD – AMA Journal of Ethics – Dec 2018
The historical relationship between health care professionals and people with disabilities is fraught, a fact all the more troubling in light of the distinctive roles clinicians play in both establishing and responding to that which is considered normal or abnormal by society at large.
I offer an overview of recent disability theory, outline a set of responsibilities clinicians have to disability communities, and provide recommendations for clinicians who hope to justly treat patients with disabilities and improve their care and health outcomes.
Clinicians’ Power to Name Disabilities
Through the creation, maintenance, and revision of diagnostic categories, health care in general and the practice of physicians in particular play distinctive roles in both establishing and responding to that which is named a disability or as disabling
Clinicians also wield enormous power over the care and treatment of people with disabilities, a group every human will become part of over the life course
I first offer 3 central takeaways from the fields of disability studies and philosophy of disability.
These takeaways demonstrate how mistaken assumptions about disability can lead to poor treatment and negative health outcomes.
They show, in other words, that when used without care and caution, the power to name and respond to disability in clinical contexts can hurt people; it is a power used unethically if clinicians do not actively learn about disability communities and practice disability humility.
Second, I formulate these responsibilities in terms of recommendations that clinicians can integrate into their practice across specialties.
Three Things Clinicians Should Know About Disability
There are 3 core insights from disability theory I highlight here: assumptions about quality of life, the problem of ableism, and the distinction between disability, disease, and illness
Quality of life.
Numerous studies demonstrate that able-bodied people assume the quality of life experienced by people with disabilities to be lower than they themselves report.3 Given that the vast majority of clinicians are able bodied, this means that many, if not most, clinicians mischaracterize the quality of life of people with disabilities
Unless that disability is pain, of course, then the vast majority of clinicians assume that it’s no problem at all.
As disability activists and disability scholars have argued for decades, people with disabilities, on the whole, flourish in all sorts of bodies and in all sorts of ways
What many people with disabilities do report as diminishing quality of life is often less the direct effect of their physical or psychological impairments than the effects of living in a society that is designed for and supportive of abled-bodied people alone.
…modern societies have been built in ways that often systematically oppress, discriminate against, and stigmatize those who are not able bodied.
There is a word for this: ableism.
The problem of ableism.
Ableism refers to the assumption that the “normal” able body is better than abnormal bodily forms and to the social ramifications of that assumption.
Ableism leads to a world where we actively shape bodies to be normal and shape our environments for those bodies alone. As this definition should make clear, ableism has unfortunately been a central and unquestioned part of medicine across its history
Ableism undermines clinicians’ ability to engage with patients with disabilities as they in fact live their lives; it distorts communication with all patients regarding transitions into and experiences of various states of disability, whether due to age, injury, or other factors; and it misaligns the ultimate priorities of medical care insofar as it fosters an unreflective support of normalcy. In all these ways, ableism leads to worse care and increases the chances of harm.
Disability vs disease/illness.
Ableism also contributes to a specific and persistent issue dogging medical communication: the ableist conflation of disability with disease, illness, pain, suffering, and disadvantage
To be disabled is not automatically or necessarily to suffer or be in pain or to have an illness or disease.
Unless you’re disabled by chronic pain. Then, we do suffer when we are not adequately treated with pain relief.
It is not a contradiction in terms to be disabled and healthy
This is exactly how I feel. My defective connective tissue causing me all kinds of small injuries and pain and disables me from regular employment. However, my body is otherwise still unusually fit and healthy.
This causes a disconnect between how I feel, and how I can act in the world. I cannot earn an income, but I am no drain on healthcare resources – as long as I’m kept on my regular opioid therapy, which is dirt cheap compared to any other pain treatments.
Three Responsibilities of Clinicians to Disability Communities
Given that the demands on clinicians’ time and knowledge are already immense, I offer the following 3 responsibilities and corresponding recommendations in the hope of deepening clinicians’ existing knowledge base and skill set, enriching patient-centered care, and increasing overall health outcomes
1. Clinicians have a responsibility to develop disability humility
Disability humility refers to learning about experiences, cultures, histories, and politics of disability, recognizing that one’s knowledge and understanding of disability will always be partial, and acting and judging in light of that fact
2. Clinicians have responsibilities to communicate better with and about patients with disabilities
Developing the virtue of disability humility will assist in improving such communication, for successful communication is as much a question of what one knows as it is the recognition of what one does not know.
Wouldn’t it be nice if doctors could remember that they don’t know everything. Perhaps they would stop saying our pain is impossible when they can’t find a trace of the cause, perhaps they would stop saying that it’s not that bad just because it’s not that bad for them.
3. Clinicians have responsibilities to recognize the authority of people with disabilities as experts about their own lives and communities and to elevate their voices.
The claims made by people with disabilities as well as entire disability communities are regularly diminished or not taken seriously.
We pain patients are only too familiar with not being taken seriously. If our pain has no obvious cause and yet we tell our doctors that it is disabling, they simply don’t take us seriously.
In 2013, approximately 1 in every 5 adults reported a disability.
Disability has always been and always will be a part of human life
This is an extremely important statement because it articulates the truth too many people would like to forget.
Our presence always reminds them of this unpleasant reality, that they themselves will most likely find themselves disabled at some point in their lives as well.