The language of disability
In recent weeks, there have been a number of media reports on issues affecting people with disabilities. These have included a child with autism who went missing in New York City, a public forum and debate about palliative care and assisted suicide in Westchester, the mother of a woman with cerebral palsy facing criminal charges for causing her daughter’s death, and a Princeton student using a hunger strike to address issues of reasonable accommodations. In each of these situations, the reports described the people involved as “autistic,” “disabled,” or even “severely disabled.”
In contrast to these stories, there was a recent profile of a 7-year-old girl from Virginia who competed in and won a national penmanship competition – even though she was born without hands. The story beautifully describes how she learned to hold a pencil between her forearms without being sensational or portraying her as a victim. This is a great story of individual achievement!
The language that is used to discuss individuals with disabilities is an often-overlooked aspect of the disability rights movement. People with disabilities are the world’s largest minority group, and include individuals of all ages, genders and sexual orientations. However, even though there has been a great deal of improvement in our use of language to address issues of sexual orientation and race, attitudes and perceptions about people with disabilities have been slower to change. It is important that people are made aware of the meaning behind the words they choose when referring to this community.
To the public, descriptors such as “disabled” or “autistic” may appear to simply be an objective view of reality. However, this type of language is disrespectful and serves as a barrier to inclusion. It portrays individuals with disabilities as helpless victims and helps to perpetuate outdated stereotypes about their limitations.
Advocates should actively support a change in the language used to describe people with disabilities. “Person-first” language refers to the idea that, when talking about a person with a disability, the person should literally come first – for example, “the woman, who is disabled,” rather than “the disabled woman.” The person is mentioned first and the disability is mentioned second in order to reinforce the idea that the person’s disability is an aspect of his or her life, not a defining characteristic. This language reinforces the idea that each person is a unique individual with interests, ideas, and characteristics apart from his or her disability. In addition, instead of defining people by their disabilities (“he is learning disabled”), this language (“he has a learning disability”) makes it clear that the disability is only one facet of a person’s identity. Similarly, a disability should be a descriptor, rather than a noun – a “person with autism” rather than “an autistic.” A disability is something a person has, rather than what a person is.
In addition to literally putting the person before the disability, "people-first" language also includes a focus on the specific individual rather than on his or her disability. For example, a person’s specific condition should be referenced whenever possible, in order to avoid lumping all people with disabilities together. Finally, avoid negative descriptions of a person’s disability, such as “a man who suffers from cerebral palsy,” or use of the word “victim.” In particular, a person with disabilities should not be referred to as a “patient” unless he or she is receiving treatment in a medical facility.
These descriptions elicit sympathy or pity toward individuals with disabilities, rather than acceptance. People with disabilities should also not be portrayed as courageous, brave, or special, as it implies that it is unusual for people with disabilities to have talents or skills or for them to live productive lives.
The ultimate goal is to allow public recognition of the unique challenges that disabilities pose to individuals, families and communities so that members of the public can gain a better understanding of the ways people have adapted in order to live autonomously. Ignorance of these challenges can cause even well-meaning individuals to act in a manner that is insulting or belittling to people with disabilities. The first step toward changing this is to eliminate disrespectful and exclusive language.
Four specific action steps are recommended:
* Review the language you use, in writing and in conversation. Use a person-first perspective to clearly demonstrate respect and dignity for each individual. Do not refer to a person’s disability unless it is directly relevant to the discussion at hand.
* Recognize disabilities as challenges that can be dealt with, and educate those around you about the importance of showing respect for individuals in all situations.
* Reach out to publishers, editors, college professors, elected officials, and others who influence the public discourse to advocate for the use of person-first language. In order for public opinion about people with disabilities to be brought up to date, the public needs to hear and use appropriate language.
* If you’re unsure of the appropriate language to use, just ask!
Dr. David Jacobsen, Psy.D., is the executive director of Rockland Independent Living Center in New City, New York, a nonprofit organization that provides advocacy and leadership in the creation and development of an accessible and integrated community for people with disabilities, so that each individual may pursue lifestyles of their own choosing. For more information visit www.rilc.org