In different disability circles there seems to be a conversation about “preferred language.” For example, many of us parents feel strongly about “people first language” and most professionals are taught to use it. However, almost all my friends who have disabilities prefer “identity first language.” And before you say, “that’s terrible, a person is a person first,” let’s remember we do not get to tell a group of people we don’t belong to what terminology they should identify with.
I have also noticed children tend to identify with the language their parents use because that’s what they have primarily heard most of their lives from their parents. As they get older and begin to connect with people in their own communities, often those ideas change and they adopt the language used in their community. Which makes sense.
This leads to the next question I’ve had to think through, “Should I use ‘special needs’ or ‘disability?'”
To me the answer is simple: a large majority of adults with disabilities have made it clear they prefer the term “disability” and do not like the term “special needs.”
It really shouldn’t matter what I think or what you think — if disabled adults are saying, “Hey, say ‘disability’ we find the term ‘special needs’ unacceptable.” Then it should be so. Again, as an able-bodied adult, I do not get to tell a community of people what terms they should use for their identity.
One of the best things I have done for my daughter, who has cerebral palsy, is get her connected with people in her community. Two of my closest friends are twin sisters with cerebral palsy, and they have become Nina’s mentors and role-models. And they are not the only other people with cerebral palsy she knows. At our former church, one of my good friends also had cerebral palsy, and there was a young man with CP as well. The pastor I most respect (aside from my husband) has cerebral palsy and I find great encouragement in his teaching. So my daughter has been around people who are like her. She’s had the opportunity to ask, “Do other people sometimes treat you like a baby?” “Has anyone ever pushed you in your wheelchair without asking?” “Has anyone ever called you r*t*rd*d?”
Conversation that — although she is comfortable having them with me — she’s keenly aware the understanding and connection to people who are like her is much deeper. Like she said to me once, “Mom, I know you love me, but you don’t have a disability, so it’s different.” Basically she was saying, “your life experiences are different mom, and you can sympathize, but you cannot understand.” I think that’s fair and reasonable. I can understand that.
Recently, I asked her about what terminology she preferred.
“Nina, do you prefer ‘special needs’ or ‘disabled?'”
“I don’t like either.”
“What do you mean?”
“Well, why don’t just call it cerebral palsy, or CP?”
“What about when I am talking about both you and your sister, because she has Down syndrome, and also, I write about it. Would you prefer ‘special needs’ or ‘disabled?'”
“Not ‘special needs’ it makes me feel like a baby and it feels like being made fun of. And not ‘disabled’ because it makes me feel like I am ‘less than’ other people.”
“Is there another option or do you just want me to say CP and Down syndrome?”
“Well you can say I have a disability.”
“But not ‘disabled?'”
“No, disabled makes me feel like I am less than other people because I am not able, but disability feels different.”
“Why do you think it feels different?”
“Disabled is like you are disabled, but disability is like you have a disability but you are still a person.”
“OK. That makes sense. That is what people refer to as ‘people first language.'”
“What’s that?”
“You refer to the person first, and disability second. It is not what defines your person. So you are a girl with a disability or a girl with cerebral palsy, but it is not who you are.”
“I don’t get it.”
“Well, it’s like –”
“Mom, just say disability.”
“Because it’s something you have and not who you are.”
“Yeah, yeah. Are we done?”
“Yes, thank you.”
So here is where we stand: My daughter who has cerebral palsy prefers people first language, and she prefers the term “disability.”
I will respect her choices and this is the language we will use. I know part of why she identifies with the term disability is because of the connections she has with people in her community who use this language. Perhaps some day she will prefer to use “identity first,” but for now, we know the language to use.
As for my youngest daughter, who has Down syndrome, I will use the language preferred by adults with Down syndrome.
I often say I want people to listen to my children and respect their words and what they have to say. I must lead by example and listen and respect what the disability community has openly expressed about their own identity and preferences.
Moving forward, I will use the term “disability.”
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Thank you as this has often bothered me about your blog. I try not to get caught up in lauguage but adults with disability generally don’t like the label special needs.
Good post. I have one issue with it. You say “disabled adults are saying” or “preferred by Adults with Down syndrome” as if there is a unanimous consensus, but I don’t think there is. I get that most adults that self-advocate have that preference, but I don’t think they should speak for everyone.
I agree every person is different, but, I do not think the voice of the majority can be dismissed simply because it does not apply to everyone.
I’m glad you could discuss this with your daughter. I’m 65 and I have cerebral palsy . When I was a child this wasn’t even an issue. I prefer saying telling people what I have. When people look at me, they can tell I have a disability.
My book It Takes More Than Legs To Stand is on Amazon.
Great post…I would be curious to know what she thinks of the term “living with a disability”
Thanks
Just asked her, she said, “What? I don’t get it, I have a disability, I am not ‘living with it.'”
This is the example I thought about after she said this: I have brown eyes, I am not living with brown eyes.
Thanks for asking her for me.
She has a great point!
Thanks for sharing this story with your daughters. I can totally see having this conversation with my daughter and will do so on our next mom/daughter date.
I think “differently abled” as opposed to disabled would have a better connotation.
Pamela, are you a person with a disability?
My son, who has CP and Elhers Danlos Syndrome, thinks terms like “differently abled” sound condescending. He’s says that it sounds like something is wrong with saying he’s got a disability.
I have heard that from other people with disabilities regarding that terminology as well Sherry-Lynn.
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Good post. My daughter is medically fragile and medically complex. She has 2 rare disorders and over 10 diagnoses. She is severely cognitively impaired and nonverbal. If I tell someone she has Trisomy 9 and Dandy-Walker Malformation with hydrocephalus, there is no point of reference to understand how she is impaired. This is why, as her mom, her advocate, and her voice, I say she has medical special needs.
As an adult with an invisible disability and mom to two kids with very obvious physical disabilities, the term “special needs” has always bothered me. My 10 year old daughter has expressed sentiments very similar to your daughter. She’ll say things like – “I have a disability.” or “I’m blind”. It is part of her identify and she is proud of who she is. She does not seem to feel that she has special needs and does not identify as different than others because of her disability (a character trait I wish we could all share!). My younger daughter can not verbalize her thoughts on the matter, but I still don’t refer to her as having special needs. If I must describe my kids to others in categorical form, I might say “complex medical needs” or “unique learning challenges” depending on the context (medical vs school, etc). Or I might just say, “disability”.
Wow. Great insight. I will remember this when providing disability awareness training. Good advice: just ask!
I use “differently abled” with my youngest son because he can do virtually anything, he just does it differently. My older son I call disabled. He is total care and can only communicate by facial expression. A tragic accident left him with traumatic brain injury. He can not so much as comb his own hair or swallow his food. To me that is disabled.
I use “I have Cerebral Palsy” or “I am disabled/have a disability.” To me “disabled” and “disability” are the same term personally.
“differently abled” sounds like avoiding something.
I think that if the person with the disability is able to articulate what language they prefer, then they should be asked what they prefer. My son prefers to say he has a disability or that he uses a wheelchair. He HATES the term “special needs”, as do I. I prefer, for myself, to simply say that I have Klippel-Feil Sydrome.
I usually say cerebral palsy or “CP” (truth be told I don’t really feel disabled). A few months ago I read an article where the author called their (very young) child with CP as handicapped and I suggested gently that maybe that wasn’t the most appropriate term (identifying myself as someone with CP). The author responded by making fun of me. Truth be told, a lot of blogs by parents of kids with different abilities kind of disturb me, I wouldn’t have wanted my family and my parents friends to know every detail about my surgeries and struggles and I certainly wouldn’t have wanted strangers to know. That said, your blog and website is very well done and it seems you have respect for your children.
Bee, you echo what I hear from adults with disabilities. I have taken that to heart and hope I uphold my children’s dignity and respect, always.