By Guila Franklin Siegel
My parents resisted using wheelchairs for as long as they could. Cerebral palsied from birth, they were fortunate to be able to walk independently, albeit with great difficulty. My mother’s pronounced gait routinely threw her off balance, and my father’s mobility was
similarly precarious. Nevertheless, unsteady as they might have been, their bodies took them up and down subway stairs, shepherded my father to work each day, sustained a full-term pregnancy and propelled my mother — and my baby carriage — throughout our neighborhood in Brooklyn.
But, as our tradition teaches in Kohelet, for everything there is an appointed season. Although my parents defied everyone’s expectations by living well into old age, time outpaced their physical stamina. Their health waned and eventually they each needed to begin using wheelchairs.
Those wheelchairs were somewhat of a nuisance — the interior doorways of their apartment were not accessible, use of public transit and private taxi services became impossible and even simple outings became a major production, especially in winter. But the wheelchairs also made it possible for my mother and father to continue to live independently. They were critical tools in service to their extraordinary, larger-than-life owners.
They brought my parents to doctors’ appointments, to synagogue, to Shea Stadium and to their eldest grandson’s bar mitzvah. The vision of my mother joyfully dancing in her wheelchair at my son’s party is burnished in my memory, and those of my dear friends who shared that evening with our family.
My parents may have used wheelchairs, but they were most definitely not “wheelchair-bound.” The latter label evokes a “person-last” image of a powerless disabled person held hostage by a confining, dehumanizing contraption with belts and straps. That was emphatically not my parents, who refused to be limited by much of anything, least of all a mobility device that enabled them to live their lives.
Over time I had noticed use of the term “wheelchair-bound” dissipate, in newspapers, online and elsewhere. Like offensive terms such as “retard” and “cripple,” the phrase “wheelchair-bound” appeared headed to the trash bin of archaic, bias-laden linguistic stylings.
Imagine my surprise, then, when I heard the term “wheelchair-bound” used not once but twice by special educators who spoke at a public hearing before the Montgomery County Board of Education. I attended the hearing in my professional capacity; ironically, my agency, the Jewish Community Relations Council of Greater Washington, submitted testimony urging Montgomery County Public Schools to undertake greater efforts to combat school-based anti-Semitism and other forms of hatred, and to achieve greater equity for black, Latinx and low-income students. Also under discussion were proposed changes to certain special education classrooms, changes that were opposed by some teachers. In one context or another, therefore, most of the testimony delivered that evening concerned equity, respect and inclusion.
The second I heard “wheelchair-bound” I tensed up. It was astounding to hear a special education teacher, of all people, use a term that is so anathema to people with disabilities and their allies. I do not judge the merits of these teachers’ testimonies. But shame on all of us for not nurturing a communal standard that renders use of this offensive term unacceptable.
My surprise and concern only increased when I shared this anecdote with colleagues and friends. Many people were simply unaware that “wheelchair-bound” is a problematic term. As a reality check, I spoke to a colleague involved in the disability community, who was aghast. “That’s like using the term Mongoloid” to refer to people with Down Syndrome, she observed. “It’s just not done.”
Quite the disconnect. To be clear, I don’t think that most people use this kind of language out of malevolence. These uncomfortable moments are a natural by-product of a society that persists in viewing disabled people through lenses of pity, condescension, ignorance and even revulsion. So, even in a civic forum where the spotlight was squarely on issues of equity and dignity for minority children, non-disabled people still referred to disabled children using an objectifying and dehumanizing term.
It can’t be said enough: words matter. My plea for this Jewish Disability Awareness and Inclusion Month is that we banish all of these anachronistic, disrespectful terms: words like “spaz” (spasticity is a natural part of cerebral palsy, not a synonym for clumsiness); “schizophrenic” (it’s a medical diagnosis, not a disparaging descriptive); and “crazy,” psycho” and “loony.” For it is not wheelchairs, or any other device, that binds or limits people living with disabilities; it is the mindless, casual prejudice that permeates our language and actions that is the true barrier to equality and justice. WJW
Guila Franklin Siegel is associate director of the Jewish Community Relations Council of Greater Washington.