Person First vs Identity First Language and Labels: An Autism Post

I haven’t posted anything about Autism Awareness Month so far (largely because the awareness thing isn’t going to make autistic peoples’ lives better without acceptance and understanding) but this topic has come up a fair bit lately in various articles.

First a definition: Person first language means using language that emphasizes that a person with a disability is a person, afflicted with a thing. Some people prefer this way of talking about autism because they don’t like the idea of emphasizing a label, so they say “person with autism.”

Identity first language is language that embraces the label as a part of a person’s identity. Some people prefer this way of talking about autism because it emphasizes that autism is a part of who they are and that they accept themselves as they are, so they say “autistic” or “aspie.”

If you start looking at the conversations going on on the internet, you’ll see a pattern in who prefers person first and who prefers identity first language. The parents of autistic children prefer person first language, because it allows them to say things like “I love you, but I hate your autism,” and lets them love their child without accepting their child for what they are.

Autistic people themselves for the most part prefer identity first language. They want to be able to take pride in who they are. And they want to encourage the world to understand them and accept them.

And another thing I’d like to touch on is parents who know their child has been diagnosed with an autistic spectrum disorder, but don’t tell their child, because they don’t want their child to be labelled. If you take away words, you make it impossible to talk about something. Imagine you’re trying to tell someone you need something to drink, but you have no word for “water” or “thirsty”.

I’ve never understood this fear of “labels” that everyone talks about. I’m not a person who’s married. I’m not a person who writes novels, or a person who flies aeroplanes. I’m a wife, a writer, a pilot. The only time a label becomes frightening is when it’s considered innately negative and shameful. No one fusses over a war vet being referred to as an amputee, and that’s because people don’t think being an amputee is shameful or that an amputee needs to be separated from their disability.

And Autistic people should not have to separate themselves from their diagnosis in order to be worthy of love, respect and understanding.

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Diane Kitson: Feb 28th, 1921 – April 6th, 2016

Diane Kitson

I’ve mentioned my Grandma has not been well for some time. At Christmas, she wasn’t well enough to travel, so my cousins and I collaborated on having Christmas dinner at her house in Portage. I think we all knew it was possible it could be the last Christmas we had with her.

In January, she had an episode that turned out to be another heart attack, and had been in the hospital since. They’re not actually sure how many heart attacks she’s had, because sometimes when she’s felt that way, she didn’t actually go to the hospital, just toughed it out. My dad has been with her nearly half the day every day, especially toward the end. She hated being in the hospital, and she hated not being able to look after herself. She was a person who looked after other people.

She turned 95 in the hospital and all the family in Manitoba went in to have supper with her. I went early with Nathan so I’d have time to spend with her when I had her to myself. She said the nurses tried to tell her not to dwell on the past, and focus on the present and look forward to the future. And she told them “I’m sick in the hospital and can’t go to the bathroom my myself, and there’s nothing in my future except saying goodbye. I had a good life and it makes me happy to think about good times.” She didn’t let people tell her how to think.

I last saw her three weeks ago, to show her the new car. I stayed all afternoon and had supper with her and my dad. I told her how I was almost done with my flight training and would be able to start looking for a job soon. She said she was proud of me and how hard I’d worked. And she said she was glad I’d listened to my Dad’s advice on a new car, and that the foolish man thinks he knows everything, and the wise man listens to advice. She took my hand with her good one and squeezed it as I left. She knew every time she saw a loved one, it could be the last.

I had told my dad that if anything happens to call me and I’ll drop everything to rush into Portage and be there. I got that message on Wednesday. She’d had more than usual trouble breathing the night before, and everything went downhill from there. When I got to Portage, she hadn’t been conscious since the night before, and they had her on a breathing machine to keep her alive until family got there. I walked in and my cousin looked over his shoulder and said “I’m so glad we did Christmas.”

My Grandma was the kindest person I know. She was the sort of person Christians aspire to be. She was Christian, but not especially religious. She didn’t go to church often – I think she was too busy *being* what they call Christ-like to sit through sermons telling her how to be more Christ-like. She didn’t judge people. When someone was mean, or angry, she always described it as “They’ve got something inside them, see, riling them up and upsetting them. It’s because they’re hurting that makes them hurt others.”

She lived down the street my whole childhood and spent as much time raising my brother and I as either of my parents, so our relationship with her was always more like a mother than a grandmother. I don’t know how I would have made it through my parent’s divorce if she hadn’t been there. There was a lengthy custody battle and a lot of both parents badmouthing one another to us, and we were very confused. I felt helpless and had no control over what was happening. I remember I was crying in my room one day when I was ten or twelve, and Grandma sat down and cried with me. Because it hurt her to see me hurting. She told me she understood, and that my parents were too busy trying to hurt each other to see what they were doing to us kids. At the time when my parents probably couldn’t have handled the guilt of validating my feelings, she was there for me.

She was always disappointed she never got to finish school, and had to stay home and help her mother look after her younger siblings. Of which there were many – her mother had fifteen children, though only thirteen of them lived to adulthood.But she made sure her own children had the chance to go to school and be whatever they wanted to be. She always supported me in whatever I wanted to be as I searched over the years trying to figure out what that was. When I told her I wanted to be a pilot she was surprised, but never hesitated to carry on being supportive of my decisions. She was afraid of flying herself, but she never thought there was a profession women couldn’t do just as well as men, never discouraged me, and sent money to help me along. I know she was proud of me. She was the first person I called to tell when I got my commercial licence because I knew she’d be proud.

I will miss her.