Having a daughter with special needs has taught me so much. It’s not all fun (most of it isn’t), but it has forced me to pause and reconsider much about the way I navigate the world–and especially how she does. At almost 11, she is non-verbal, which means that I often think about how to communicate for her, represent her for herself in ways I interpret she might wish. Admittedly, a lot of this is reading between the lines, and I make a lot of mistakes along the way.
One of the most important things I’ve learned is to help others recognize her as a child. A person who has special needs, rather than a special needs person. To see her as a person first, and after that as a person with disability. In all honesty, there are days when this language helps me even as her mother “re-see” her when the hours are fraught with difficulty and relentless care. She is a child, my child. And, yes, she has disabilities too.
And one of the ways I can help her navigate her world is to help the world see her more in this light. So, I never refer to her as a special needs child. I gently prompt others whenever possible to consider a person-first label for her and for others. Is this about an agenda of political correctness? No, it isn’t. It is about helping our daughter be received with hope, and embraced by her wider community to the extent that she can be.
When it comes to this type of terminology discussion in diabetes, I see parallels. I inwardly cringe at the term diabetic. It feels like an adjective, rather than a description of a person who lives with something difficult. I feel empowered by the phrases “Person with diabetes” or “I have diabetes.”
I recognize that not everyone feels this way, that sometimes the PC machine puts the cart before the horse. But I do wonder whether a change of language can change the tone around difficult aspects of our lives and infuse our conversation with hope.
I, also, have not been comfortable saying that my son is diabetic (as opposed to “having type 1 diabetes”). Now I think I might have had the same issue as you, without analyzing it.
Although, weirdly, I have no problem saying he is T1D. Possibly because these are insider words?
I understand what you are saying and I agree that we are always people before we are anything else. And I understand that words convey a feeling, almost a prejudice, that can be hard to overcome.
I have personally fought hard to overcome any feelings about how the disease is viewed and to dismiss anything that may come with it from an outsider’s view.
People can refer to it however they want, it doesn’t not affect what I have to do, and what I choose to do with the disease.
No longer giving anyone else the power to affect your thoughts or feelings on diabetes is empowering. To me, truly not caring about other’s perceptions or the terms they use feels like strength. I’d like to encourage that.
@Eric, thanks for helping me sort this out and explore this concept of language more. I guess part of me feels like there is power in the words we use. And admittedly, if I read more books on co-dependence, maybe I’d get to a place of not caring what others think, and perhaps that is a sign of true health.
On the other hand, my husband and I are raising a fully dependent daughter. She doesn’t get to choose what to say or how to say it or maybe more to the point what is said about her. Can I control what is said of her? Absolutely not. Would I like to? You betcha! Mostly because what is said of her, the way she is labeled, shapes perception–others’ perception of her and her perception of herself (her receptive language skills are high).
Language shapes perception. It has meaning. Variation of language has meaning and alters it. I’ve felt it in my own life–the way I use language shapes the way I see the world.
Stanley Hauerwas says, “we learn to say before we learn to see.” In our daughter’s case, language is particularly fascinating, because she doesn’t have verbal language. So perhaps my analysis about what is said about her is particularly keen.
I’m not trying to be the language police here. But I am exploring how encouraging others in tiny changes (or even just ourselves) might reap big rewards.
I understand what you are saying. There is no stronger love than a mother’s. The feelings you have are deeply inspiring.
I am not a soft person with language. I don’t always speak gently. I need to learn more of that. So I am open to hearing these things because it will help me.
When others speak of your daughter in a way that you do not like, sometimes they may deserve a verbal smackdown, but other times it may just be a simple mistake, a lack of understanding on the correct way to say something.
When someone makes a mistake, correct them and they will be thankful because it will help them in the future.
When someone deserves a verbal smackdown, give it. But know that they are the ones lacking in grace, not you or your daughter.
And I will gladly give a smackdown on your behalf whenever it is needed. And there are about 50 other people here who will also volunteer too.
Hi. I agree with your point of view & as a lover of language, believe we need to choose our words wisely. So good for you for drawing your line, on your daughter’s behalf! Words have power and though Eric’s point is well taken, my opinion is that our words can eventually influence our thoughts & actions.
My pet peeve is referring to it as “my” diabetes. It’s not mine & i don’t claim it. I have it, i deal with it & i manage it. But it’s not mine. I might slip sometimes but i am trying to stay aware of the words i use.
My wife and I hate labels also. Our son is on the spectrum but we’ve always just let him know he’s different, special, and in some ways (math for instance), far superior than us “normal” folks. Labels are so restrictive. We refuse to allow him to ride the “short yellow bus” because of the stigma associated with it…we pick up and drop off all our kids (unless they ask to ride the bus.)
I’m still trying to figure out…navigate if you will, how I want to address the topic of diabetes with friends, relatives, or just random new people he may encounter throughout his childhood…“I have diabetes” instead of “I’m diabetic” does seem to settle with me better also…because it doesn’t sound so restrictive…
@ClaudnDaye, I feel like this in general about my kids, though for some reason the idea that Samson’s “diabetic” as a opposed to a kid dealing with diabetes doesn’t bug me as much as other particular labels might. For instance my older son often trips while walking, has something physical therapists hone in on right away as the telltale “W-sit” and has issues with things like holding a pencil. I’m sure we could get a diagnosis for it if we were pressing to find a reason for this constellation of behaviors. But to me that seems counterproductive; I will only go that route if I think he needs some kind of intensive therapy that would not be paid for without that label. Which I think says something about the stigma we attach to each of the labels in our head.
Yes…our son, who is on the spectrum would not get the treatment necessary without “the label”…special school IED-led programs and such. He’s not at all “behind” except in the social aspect (as it typical with children in the autism spectrum).
