Anti-disability Awareness? When research into disabilities might actually hurt disabled people.
by RNE submissions on 09/13/16
It can be hard to focus the medical system's attention on quality of life for patients (over black and white medical outcomes), but sometimes in the zeal to explore patient perceptions of poor medical quality of life, researchers inadvertently stigmatize and devalue entire groups of disabled Americans.
A recent survey by Rubin, et. al, published in JAMA Internal Medicine showed that many able-bodied adults surveyed about medical disabilities showed participants view several medical states, such as incontinence, as "worse than death". While on the outset this seems like helpful insight into patient views on quality of life, the ways in which researchers frame questions can actually be harmful to chronically ill and disabled patients. For example, just because a survey shows currently able-bodied adults *fear* certain disabilities would be "worse than death", does not mean they would *actually* perceive their lives as torturous, should they become disabled. There is a difference between what people think it would be like to live with a disability, versus what it is actually like to live with one. This study tells America that many adults feel horror at the idea of acquiring a disability such as "becoming incontinent," without actually exploring whether or not it IS horrible to be incontinent.
Why is this a problem? It is a problem in that focusing on the perception of disability and chronic illness can harm the care of actual disabled and chronically ill people. In reality, many disabled and ill Americans live fulfilling and productive lives, and it is a form of anti-awareness to highlight how awful/scary/devastating "abled" people view the idea of becoming "disabled" or "ill." Ignoring the many ways in which disabled and chronically ill people love and enjoy their lives creates a negative perception of them as a group, and of what they can offer to society.
Following the example of incontinence: all over this country, children and adults
live their lives in the midst of catheters, ostomies, and diapers,
without despair. "Worse than death" is definitely not how they would describe their daily experiences with incontinence. Unfortunately, the reality of how actual incontinence is handled is much less recognized and understood than how scary and undignified the idea of incontinence seems.
Disability and illness most often are not in and of themselves worse than death. Accommodations and compassionate
care can bridge the gap for many people with disabilities to function in
normal living patterns, with normal aspirations and contributions to
our world. This reality needs more time and space in research and medical teaching. If anything, the current study highlights how very far we still have to go in disability advocacy.
JAMA Study: http://archinte.jamanetwork.com/article.aspx?articleid=2540535
