Rewriting the language of disability
The language we use to describe disability will influence those faced with the challenges it presents, especially children, writes PAUL O'DONOGHUE
DISABILITY. BEFORE reading on, pause for a moment and consider what the word means to you. In a recent Technology Entertainment and Design talk (Ted), Aimee Mullins, who was born without shin bones and had double below-knee amputations as an infant, told of her reaction when she first looked up “disability” in her 1982 thesaurus. It meant: crippled, helpless, useless, wrecked, stalled, maimed, mutilated, weakened, impotent, paralysed, handicapped, decrepit, hurt, useless. The antonyms given were healthy, strong, capable.
The 2009 online edition was not much improved. It included: blind, deaf, mute, lame, immobilised, ailing, diseased, unfit, unhealthy, unsound. The antonyms given were healthy, hearty, robust, whole, wholesome.
Mullins was offended by these definitions. The arc of her life belies the implied hopelessness contained in the descriptions given. She is an intelligent, strong, competent woman who has achieved great success as a paralympic athlete, a model, an actress and an advocate for women, people with disabilities and the power of science and technology to help overcome many of the challenges that those with disabilities must face.
She offers a new (and better) thesaurus definition of “disable”: to crush a spirit, to withdraw hope, to deflate curiosity, to promote an inability to see beauty, to deprive of imagination, to make abject.
The point is that the language we use to describe disability will have a direct influence on those currently faced with the challenges that disability presents, especially children.
The use of the acronym TAB (Temporarily Able Bodied) by some disability groups is a reminder that the majority of us will face disability-related challenges during our lives as a consequence of illness, accident, growing old or other factors.
The issue of the language used in describing disability in professional circles has had a parallel history of tension, conflict and evolution to that outlined by Mullins. Nowadays, the historical emphasis on a personal defect in the individual has been replaced by a discourse that sees disability as resulting from a complex interaction between the physical impairment a person may have, the disability that may arise from this, and the environmental and social factors that may result in an inability to live a full, engaged life.
Such an approach engenders a clearer, more respectful and positive attitude to disability and encourages effective dialogue and more meaningful interventions by all concerned in facilitating those with disabilities to live the lives they choose.
There are many examples of the enormous contributions that biomedical science and technology have made to the improved quality of life of those with disabilities; from computer key guards and power wheelchairs through switches that aid access to computers and to environmental-control systems, to a range of communication aids such as that used by the physicist Stephen Hawking.
A letter published in the science journal Nature on May 17th gives an indication of exciting new developments. Researchers at Brown University in the US have developed a neural-interface system that allows a woman with quadriplegia (unable to use her arms or legs) who is unable to speak, to control a robotic arm with which she was able to grasp a container of coffee and to drink independently for the first time in 15 years.
Her joy at her success is evident in video footage of the event. The neural-interface system connects her motor cortex to a computer system allowing her to control the robotic arm with her thoughts. It is intended to develop a wireless version of the device which will undoubtedly be utilised soon.
At the Massachusetts Institute of Technology researchers have developed a powered robotic ankle that can be worn as part of a limb prosthesis that allows a much freer and more natural gait. This facilitates more effective walking and minimises hip and lower-back pain for the wearer.
Mullins emphasises the human capacity to adapt and to flourish in adversity. This innate resilience is perhaps most evident in the gung-ho attitude of many children born with serious and even life-threatening conditions.
Developments in science and technology make for a promising future and one in which hope, curiosity and imagination continuously expand to enrich all our lives.
Paul O’Donoghue is a clinical psychologist and founder member of the Irish Skeptics Society.