Sue Robins was checking her email on Tuesday when she noticed a message from the B.C. government with “Transition Information” as the subject line.
Inside, roughly 552 words detailed what Robins would need to soon do so that her son, Aaron, can continue to access services for people with disabilities. But it wasn’t the forms or lengthy checklist that caught her eye. Instead, it was an outdated and derogatory two-word term for people with disabilities, used twice, that sparked feelings of anguish and frustration.
“Clearly no families were engaged to review this letter before it went out,” Robins said on Twitter.
“In 2020, the ‘R’ word isn’t used in front of families or people with intellectual disabilities even in the hospital for medical reasons. Language matters. Do better.”
Nowadays, this is where 98% of my grief stems: I get a generic email from the Ministry of Child + Youth Development + they use the term ‘mental r*tardation* not once but twice. /1 pic.twitter.com/ueXYwjBoHk
— sue robins (@suerobinsyvr) February 18, 2020
Black Press Media obtained the email, which was sent by Children and Youth with Special Needs, a department within the Ministry of Children and Family Development. The term “mental retardation” can be read twice in the email.
It’s unclear how many people received the email, but appeared to be targeted at parents and guardians in the Lower Mainland.
“Mental retardation” was once a medical term used in the Diagnostic and Statistical Manual of Mental Disorders, a guide used by the medical industry for diagnosing mental disorders. But the outdated terminology was replaced in 2013 with the term “intellectual disability” after then-U.S. President Barack Obama signed a law which required its predecessor to be stricken from federal records.
The ministry said in a statement to Black Press Media that the email was part of an older correspondence template and is being updated.
“We sincerely apologize for any distress the letter has caused,” the statement reads. “The ministry values inclusivity and we understand the profound effect labelling can have on children, youth and families.”
But Robins disagrees, and feels “like they are out of touch with the people they are serving,” she said in a phone interview.
“Anyone remotely in touch with our community and the community of disabled people and kids should know the ‘R’ word is the worst possible word.”
The derogatory and hurtful word may no longer be used in medical journals, but it can still be found in comedy sketches and other pop culture, and used on social media.
It’s a word that Aaron, who is 16 years old and has Down syndrome, has heard in the schoolyard.
The teen had one comment about the letter: “Why is the government calling me the ‘R’ word?”
Aaron has a go talking to hospital staff too. He says he’d like doctors to treat him with respect because he has Down syndrome. 💣 pic.twitter.com/Su8tspYV5l
— sue robins (@suerobinsyvr) November 25, 2019
Robins said she wants the ministry to better understand people in the disability community and avoid mistakes like this in the future. She suggested forming a committee of those with lived experiences to get feedback on its communications and how its services are delivered in general.
“If they did that and created a more person-centered system, then the whole thing would be turned upside down,” she said, adding that it could be just what is needed to make navigating the government requirements to access services less complex and tedious.
“It’s not centered on Aaron right now, it’s a part-time job to figure out.”
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