Thu., November 4, 2021
An author, speaker and
disability advocate fed up with being described as “wheelchair-bound” – which the disabled community has long identified as inappropriate – channeled her frustration
into a Halloween costume inspired by the “outdated ableist term.”
Photos shared by Canadian-Australian writer
Tara Moss show her being, quite literally, “wheelchair-bound,” with her arms and legs restrained to her wheelchair; Moss tells Yahoo Life that her husband “faux-tied”
her restraints, which she removed before heading out to trick-or-treat with their daughter near their home in British Columbia, Canada.
Moss describes herself as an ambulatory wheelchair user, meaning she has some limited mobility when upright and occasionally uses a cane in addition to using
her wheelchair daily to alleviate pressure and pain on her lower limbs. After experiencing debilitating pain in 2016 following a hip injury, she was diagnosed
with progressive complex regional pain syndrome (CRPS), a disorder characterized by extreme chronic pain.
This year I went as the outdated #ableist
term I see most commonly used in the media to describe disabled people like myself, who use #wheelchairs.
Since her diagnosis with CRPS – “one of many invisible conditions that often require mobility aids,” she notes – Moss has bristled at how her disability and means of getting around are portrayed by non-disabled people.
“‘Wheelchair-bound’ and ‘confined to a wheelchair’ are terms I hear almost daily,” she tells Yahoo Life, “and I see widely used in the media still, along with phrases like ‘end up in a wheelchair, et cetera. Every day of the year I hear this, and so on Halloween I decided to illustrate it.”
For years disability activists and media style guides like the AP Stylebook have advised against using these terms. A guide to language from the ADA (Americans with Disabilities Act) National Network notes that “choosing language that emphasizes what people can do instead of what they can’t do is empowering”; like Moss it suggests that “wheelchair-user” or “person who uses a wheelchair” be used in place of “wheelchair-bound” or “confined to a wheelchair.”
As Moss points out, there are myriad reasons “wheelchair-bound” is misleading and ableist. For one, it’s “inaccurate,” she says, as most wheelchair users do not have any bindings in place, and those that do still typically “strongly dislike” the term.
“Importantly, wheelchair-bound also implies something restrictive and negative, when for many people wheelchairs are literally their freedom, their ticket to leaving the house, functioning and participating in the world,” she explains. “My wheelchair is my freedom machine! … Many wheelchair users see their chairs as freeing, albeit in a world that is still frustratingly inaccessible.”
For an ambulatory wheelchair user, being described as “confined to a wheelchair” is also an issue because it “implies permanent state,” Moss says.
“These terms further perpetuate myths and negative ideas, which then encourage abuse of disabled people, including myself,” she says. “For example, a person standing up from their chair is ‘shocking’ to many, but is normal for many wheelchair users, as they transfer out of their chairs, get in and out of cars, are forced to get something from a high shelf in a store, or perform recommended physio exercises, et cetera. Some wheelchair users can stand and some cannot. They all need their wheelchairs. Myths have real lived consequences for disabled people.”
Moss was diagnosed with CRPS in 2016. (Courtesy of Tara Moss) She’s heartened, however, by the responses to her Halloween costume.
“The reactions online have been wonderful and positive, largely from the disability community who share my frustration with the use of that outdated term, but also from doctors who have appreciated their ‘Halloween education,’ as one put it, and parents of disabled kids who say they will use this example when discussing inclusive language with their school,” she says. “This information is already out there, so I am just drawing attention to it in a different way.”
While society has been slow to retire these problematic terms – with, for example, the death of Stephen Hawking in 2018 being met with tributes describing the wheelchair-using physicist as being “freed” –
disability advocates like Moss won’t stop speaking out and trying to move the needle.
“Every bit helps, but overall we need more voices from the disabled community to be heard and consulted,” she says. “We are members of the community, we are workers and parents and friends and business leaders and journalists. People with disabilities are everywhere and have a lot to offer.”