“Sticks and stones may break my bones…and words can hurt me, too.” Understanding the difference between a person with dyslexia and a dyslexic person

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Who am I? I am a sister. I am a speech pathologist. I am a researcher. I am kind. I bake cookies that will blow your mind. I also have a speech impairment, an attention deficit disorder, and anxiety. I embrace all of my unique characteristics, but only some of these traits define me. My attention deficit undoubtedly impacts the way I experience the world, but it has little influence on how I define myself as a person. Being a clinician, a researcher, a sister, a kind and thoughtful human being—these are attributes that constitute my identity, which I rely on to shape my values, establish priorities, and make choices.

A person’s quality of life fundamentally depends on his or her power to self-identify. I would be deeply unhappy if my medical conditions imposed on my sense of self. If I had been defined by my speech impairment, I never could have become a speech pathologist! But, not everybody is afforded the opportunity to choose which traits define them. People with disabilities in particular are often characterized by their disabilities, labeled by someone else in a position of power. Parents have an “autistic son.” Teachers have a “special needs student.” Doctors have a “dyslexic patient.” A child gets branded by a disorder before having a chance to develop his or her own identity.

Using person-first language is a decisive step that we as a society can take to empower people with disabilities to self-identify. Person-first language is a linguistic technique used to emphasize the individual. It describes what a person has, does, or needs, but not who a person is. Using person-first language means saying “a person who stutters,” rather than “a stutterer.” It’s referring to “the student who uses hearing aids” rather than “the hearing-impaired student,” or, “the family with a child who has Cerebral Palsy,” rather than “the Cerebral Palsy family.” It’s acknowledging the “Pulitzer Prize-winning investigative reporter from the New York Times who has arthrogryposis,” rather than portraying him like this. (This article by The Arc also discusses representation of people with disabilities.)

Nobody wants to be defined by what they can’t do, or by a circumstance they didn’t choose. Disabling conditions such as autism spectrum disorder, dyslexia, or Down syndrome, are heavily stigmatized. People with impairments are marginalized, mistreated, and perceived as “different,” or “not normal.” Negative attitudes towards individuals with disabilities can impact physical, emotional, and overall well-being even more than the condition itself. Using disability-first language emphasizes a person’s limitations. Using person-first language, on the other hand, features the individual, not the disability.

Stephen Hawking (1942-2018): a world-renowned cosmologist, space traveler, scientist, and author, who also used a wheelchair and an alternative communication system. Focus on the person’s strengths, skills, and accomplishments—not their limitations!

For those of us who value respect and equality, changing the stigma around disabilities is the ultimate goal. Laws and policies supporting the rights of people with disabilities have materialized and gained traction over the past 20 years (here’s a resource about person-first language from 1992!). But, a society where impairments are not disabling—where the environment is supportive and enriching for every person regardless of diagnoses or disorders—is still at least a few generations away. A critical step towards equality is changing our culture’s attitudes towards people with disabilities, and using respectful language is essential to progress. (Kathie Snow’s been working hard to change the paradigm through Disability is Natural!)

Using person-first language is especially important for anyone whose views are taken as authoritative. Descriptions used by experts such as scientists, doctors, policy-makers, principals, parents, teachers, and service providers permeate through society. Terms used by specialists are quoted by the media and recast into everyday language, which impacts not only how the world perceives individuals with disabilities, but also how individuals perceive themselves.

Updating the language we use to describe people or groups is a huge undertaking. Changing any habit takes time, practice, and perseverance. At first, it may feel unnatural to say “children from families with low socioeconomic status,” instead of the more common phrase, “poor children.” But, once the habit is formed, “the student who uses cochlear implants” will roll right off the tongue—I promise! Then, you’ll also start noticing the pervasiveness of disability-first language in everyday life, and you might wonder if mentioning the person’s disability was even necessary. It definitely requires more words to use person-first language. Scientists and reporters may balk because of strict word counts and the need for concise phrases in publication-quality writing. But, it’s worth the effort to promote a more inclusive society.

Some people feel their identity is inseparable from a diagnosis. For example, members of the Deaf community (take note of the capital ‘D’) who use American Sign Language do not consider hearing impairments disabling or restrictive in any way, and they are proud to identify as Deaf. Some people with autism spectrum disorder also feel strongly that their identity is intertwined with autism, and they prefer being identified as “an autistic person,” rather than “a person with autism.” Perhaps a better term for what I’m advocating for is “identity-first” language. Individuals who have a strong sense of self, integrate a medical condition into their identity, and use their powers to reframe the conversation about disabilities—all the more power to them!! I encourage everyone to make personal connections with people in their lives who have disabilities. Ask questions, and listen to the voices of people who are #actuallyautistic or #actuallydeaf. But, if you aren’t sure how a person chooses to identify, using person-first language is an explicit way to show respect and empower people to separate themselves from unwanted labels that provoke stereotypes, negative attitudes, or differential treatment. 

So…who am I? I am a sister. I am a speech pathologist. I am a researcher. I am kind. I bake cookies that will blow your mind. I also have a speech impairment, an attention deficit disorder, and anxiety. Only some of those traits define me, and I decide which ones. My speech impairment didn’t stop me from becoming a speech pathologist, nor will any other medical condition dictate my identity without my consent. Every person has the right to choose what characteristics define them, whether that includes a medical condition or not.

Below are 11 ways to use person-first language. Person-first language pertains not only to individuals with disabilities, but to anyone with a condition, characteristic, or behavior that might be stigmatized, used to cultivate a harmful perception, or stereotype.

Avoid: Try:
“A stutterer” “A person who stutters”
“Special needs students” “Students who require accommodations during exams”
or “students who need extra support”
“Cleft palate kid” “The kid with a cleft palate”
or
“The kid who was born with a cleft palate”
“Hearing-impaired client” “Client with a hearing impairment”
or “Client who uses hearing aids”
“HIV patient” “Patient with HIV”
or “Patient being treated for HIV”
“Dyslexic group” “Group of participants with dyslexia”
“A schizophrenic” “A person diagnosed with schizophrenia”
“The learning-disabled child” “The child with a learning disability”
“Normal speakers” “Speakers with typical development”
or “speakers with no history of hearing impairment”
or “speakers whose test scores fell within normal limits”
“Poor families” “Families living in poverty”
or “Families with low socio-economic status”
or “Families with income below the federal poverty line”

Allie Johnson is a PhD student in UMD’s Hearing and Speech Sciences department. She also has a Master’s degree in Speech Pathology from the University of Wisconsin-Madison. Her research focuses on speech development in children with cochlear implants. She really does bake good cookies!


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