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Since 2003 WXXI and the Al Sigl Community of Agencies have worked together with the Herman and Margaret Schwartz Community to help break the ingrained stereotypes about individuals with intellectual and physical disabilities. The year-round project called MOVE TO INCLUDE, is designed to motivate individuals to take action and include more people with disabilities in the workplace, in schools, neighborhoods and in all aspects of society. Dialogue on Disability, a week-long spotlight initiative takes place every January, and is supported by the Fred L. Emerson Foundation with additional support from The Golisano Foundation.

Talking About Disability: Why the words we choose matter

As part of WXXI's Dialogue on Disablilty, Dr. Catherine Lewis offers up this guest blog post.

Here in Rochester we are so fortunate to have a local public radio station deeply engaged in our community and attuned to important conversations happening in the world today. For several years now, WXXI Classical 91.5 has hosted a Dialogue on Disability during which composers and performers with disabilities are featured and disability experiences are celebrated. WXXI’s insightful programming is a powerful vehicle for changing the narrative around disability.  In anticipation of Dialogue on Disability 2019, I was honored to be asked by WXXI’s Julia Figueras to write a blog post about the language we use to discuss disability.  I offer the following with gratitude to WXXI for lifting up the work and stories of artists with disabilities and for sharing great music all year round.

Disability is a facet of humanity, and as such, the language people choose to use to capture it can be as varied and diverse as the people who embody it. Generally speaking, there are two main schools of thought in disability lexicon: person-first language and identity-first language.  Person-first language invites us to call folks “people with disabilities” rather than “disabled people.”  This approach is rooted in a desire to emphasize the humanity of people with disabilities, to foreground personhood and position disability as just one component of a multifaceted individual’s life.  Person-first language recognizes the long history of stigmatization and dehumanization of people with disabilities, and strives to remedy that wrong by framing folks as whole “people first.”  In addition to being the format of preference by some people with disabilities, it tends to be used and advocated for most heavily by those who do not (yet) experience disability.

Identity first language turns person-first language around, suggesting that by placing disability first (as in “She is a disabled woman” or “I am Autistic”) we can (re)claim disability and position it as an integral aspect of one’s identity.  Like person-first language, identity-first language recognizes the oppression and stigma disabled people have faced throughout history and continue to face today.  By giving disability primacy in their language, disabled people are dismantling fearful, disability-avoidant tendencies and insisting disability and disabled people be valued.  Identity-first language asks us not to shy from disability, but to recognize and appreciate its mattering and meaning in peoples’ lives. For a powerful discussion of this approach to language, read Lydia Brown’s 2011 post on their blog, Autistic Hoya.  

Many factors can influence which of these approaches to language one chooses to use, and just like disability, our language is never static and can change over the course of one’s life. In her 2007 book, My Body Politic, Simi Linton writes about the way she “[became] a disabled woman over time,” initially minimizing her disability as a medical condition to be dealt with before her work in the field of Disability Studies led her to understand disability as a social, political, and cultural experience that reaches far beyond the world of medicine.

As a disabled woman, my own thoughts on language have changed over time.  For as long as I can remember I have felt great friction between the appreciation and respect I have for my disability (and disabled body) and the fearful, deficit-focused narrative around disability I regularly encounter in the world at large. A longtime user of person-first language, my experience searching for and finding community around my disability identity led me to shift to identity-first language, a gesture I undertook to communicate the great value and incredible impact disability has on my life, on how I think, on the opportunities I have had, the people I’ve met, and the values I hold.

With regard to person-first versus identity-first language, it is not my intention to offer a recommendation for one or the other.  Instead, I encourage us all to recognize the varied paths people with disabilities/disabled people navigate, and to honor the way individuals refer to themselves. It is good and appropriate to simply ask!

The place where concrete recommendations are more appropriate is when ableism creeps into our language, whether person-first or identity-first.  Ableism refers to the oppression of people with disabilities and rests on the assumption that disability equates with deficit.  It postulates that to be able-bodied and able-minded is normal, best, ideal, that it is appropriate to wish away or cure disability.  Ableism rears its head when we treat disability as metaphor.  “Turning a blind eye” and “falling on deaf ears” are expressions that exploit disability, relying on our complicity with the message that blindness and deafness equate with ignorance or lack of perception.  When we utilize phrases like “They suffer from…” in reference to a disability, we prevent disability from being seen holistically, and define it instead as entirely unwanted, as simple deficit. Consider also the idea that people are “confined” to wheelchairs.  As a lifelong user of mobility aids, I can say with utmost confidence that these devices do not confine.  On the contrary, mobility aids are empowering and freeing, affording folks the opportunity to engage with their environment in ways that are supportive of their bodies.  Disability-avoidant phrases like “special needs” or “differently abled” result in, to borrow the words of Carol Blessing, “collateral damage of good intentions.” Intended to be gentle, respectful constructs, these euphemistic turns of phrase actually perpetuate avoidance and fear of disability.  Check out this clever video about so-called “special” needs that was released in 2017 in honor of World Down Syndrome Day.

Interrogating and analyzing the impact of our language choices is one way to dismantle ableism.  We can continue to work toward a paradigm shift by asking, “What does the experience of disability offer, both to those who embody it and to those who do not?”  “How might disability shape one’s life, experiences, character, and perspectives in ways that are interesting, meaningful, valuable?  Is it really something we should strive to overcome?  The Americans with Disabilities Act (ADA) defines disability as “a physical or mental impairment that substantially limits one or more major life activities.”  In addition to this legal definition focused solely on impairment and its negative consequences, it is important to develop a definition that honors the challenges disability can present while also allowing for it to be more than impairment. In my own life and work I have come to define disability as necessary creativity. Regardless how one’s particular impairment(s) manifest, all who experience disability have in common the experience of navigating a world not designed with them in mind.  This harsh reality leads disabled people to develop an innate ability to uncover paths less traveled, to find ways to “make it work,” to employ ingenuity in order to navigate a world full of barriers.   This learned capacity for creativity, made necessary by structural ableism and inaccessibility, is a true asset, a fund of knowledge that disabled people share not  in spite of, but because of their experience. Let’s choose language that allows disability to be recognized for the rich, interesting, complex experience it is.

About the author:

Catherine Lewis serves as Associate Director for School and Community Relations in the Office of Admissions at University of Rochester, where she is proud to work alongside a team dedicated to empowering underrepresented students in higher education.  She teaches a community-engaged course on disability, mentorship, and inclusive higher education at Rochester and is co-teaching a course on disability and music at Harvard University in Fall 2019. Dr. Lewis received both her Master of Music and Doctor of Music degrees from the Eastman School of Music, and studied Higher Education at Rochester’s Warner School of Education.  She and her husband just welcomed their first child at the end of October and are loving the adventure of new parenthood.