The Words We Use Matter

Felicia Williams’ daughter Olivia, who is 8 years old, had been invited to a birthday party. Her mom and her big brother Kevin, who has autism, stayed after being invited to join the festivities.

It was going well. Kevin was sitting quietly next to his mother. Then Olivia ran up to them and said she wanted to leave.

“My daughter got up and came to me and said, ‘Mommy, can we leave?’ When we got in the car, she cried,” Williams said.

Olivia told her mom that some of the other kids at the party were staring at Kevin and making fun of him. Williams noticed the stares, too. “Kevin seemed to not be phased by it, but that doesn’t mean he wasn’t,” said Williams. “All of us left that party feeling so horrible.”

Williams, a Member Engagement Specialist with Cardinal Innovations Healthcare, leads trainings in the Chapel Hill area. She uses every chance she gets to teach people about Person-First Language, she said. This is a way of talking to and about people with disabilities that emphasizes who they are over their diagnosis.

“There have been times when people haven’t necessarily bullied (Kevin) but they have used very inappropriate language like the word retarded and I’ve had to educate them,” Williams said. “Thank goodness, we haven’t had any outrageous bully stories like people do have. I try to avoid that as much as we can. But he’s still vulnerable to that.”

Williams said that Kevin is able to repeat words. He is learning to express himself and have conversations. Sometimes people talk louder and more slowly to him, but that’s not right either, she said.

“Just because he’s not communicating the way that you’re used to doesn’t mean he doesn’t comprehend what you say. And what you’re saying could be hurtful,” she said. “When you limit a person with the language you choose and refer to him as autistic – although that is a quality that describes him – that’s not all that he is. I try to limit those labels that can be stigmatizing and limiting for people.”

Tom Wilson, Manager of Intellectual and Developmental Disability (IDD) Care Coordination in Cardinal Innovations’ Orange, Person and Chatham county area, has two daughters who have IDD diagnoses. His youngest daughter Arya is diagnosed with Down syndrome. His older daughter Dakota has been diagnosed with megalencephaly-capillary malformation syndrome (MCAP-M), a rare genetic condition that causes intellectual and developmental disabilities.

“I think it’s very important to be mindful of our language not only when we talk to people but about people,” Wilson said.

“The big one for me is the r word. Someone finds something ridiculous and they use the r word. Can we use the word ridiculous or a different word that is not derogatory to the people I love,” Wilson said. “And it’s not just the r word. People will say well, ‘That’s just gay,’ but they’re not talking about someone’s sexual orientation at all. They’re just using it to mean that’s stupid and that’s not okay at all.”

Another word that Wilson said is too easily used in popular culture is the word crazy. Sometimes it is used as a reaction to amazing or surprising news. Why not just say that’s amazing or surprising news?

“It’s the same thing for a different group of people,” Wilson said. “It’s pervasive in our culture. It really is.”

Williams and Wilson both say that the way to improve is to first, stop using hurtful words and name calling. The next step is to teach people to put the person first in the words they choose.

Say This, Not That

What to say and what not to say when talking to our about someone diagnosed with an IDD: 

Say This	Not That
People/individuals with disabilities	The handicapped or the disabled
She has an intellectual and/or developmental disability	The mentally retarded
She has Down syndrome	She is retarded; she’s Downs
He has autism	He autistic
He uses a communication device	He is non-verbal
She uses a wheelchair	She is wheelchair bound or confined to a wheelchair
He has quadriplegia	He is a quadriplegic or crippled
She has a congenital disability	She has a birth defect
He has a brain injury	He is brain damaged
Accessible parking	Handicapped parking

 

Words to choose and not to choose when talking to or about a person with a mental health diagnosis:

Say This	Not That
People/individuals with disabilities	The handicapped or the disabled
He has (or has been diagnosed with)	He is afflicted with, suffers from, a victim of…
She has (or has been diagnosed with)	She is crazy, insane, psycho, mentally ill, emotionally disturbed, demented
He has a diagnosis of bipolar disorder	He is bipolar
She hears voices/experiences symptoms of psychosis	She is psychotic
He attempted suicide/died by suicide	He committed suicide
She has a brain injury	She is brain damaged
Accessible parking	Handicapped parking

 

What to say and not say when talking to or about a person with a substance use disorder (SUD) diagnosis:

Say This	Not That
She has a substance use disorder	She is an addict, user
He is in long-term recovery	He is clean and sober
She lives with, is diagnosed with	She suffers from, is a victim of
He had a return to use	He had a relapse
Substance use disorder	Substance abuse
She is unsure about her treatment options	She is resistant to treatment
He is not yet in recovery	He is an untreated alcoholic, addict
Person with an addiction to drugs	Crack head, junkie, addict
Person with addiction to alcohol	Alcoholic