Careless words

Trigger warning: Ableist slurs and language

immigrant rock

EDIT: I wanted to add something to this post after a discussion on Twitter. All disability communities have their own preferences for the best way to address identity-first language issues. In the Autism community this article really eloquently sets out the reason why there is a preference for “autistic person” rather than “person with autism” UNLESS they have a personal preference for “person with autism”. They talk about the issues with identifiers that focus on the person first as separate to their disorder:

“It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.”

I think that should be considered in the context of reading this post. My child is neurotypical and I am presenting the views below as a parent with a child with health challenges and a health condition that has massively impacted his young life. I am his voice and advocate until he no longer needs me to be (or forever if he wants me to be) I can only talk about the language that I believe is dehumanising below – as a parent of a child with a health condition. But there are absolutely commonly understood ableist slurs that are absolutely accepted as ableist slurs. The discussion I had on Twitter really helped me understand how important it is to not speak for a community you’re not part of.

I am blessed with good comments on this blog. Generally, everyone is really nice. I occasionally get comments that start with “I feel really sorry for your kids…” and I just trash them. I don’t need to hear that shit. Particularly from people so pathetic they trawl mummy blogs just to insult the women writing them. I’m not here for that.

But sometimes comments stick with me and they hurt. Not just comments on here (though I’ll get to that..) but just comments in general.

I’ve never really understood the “sticks and stones may break my bones, but names will never hurt me” adage. Names and words do far worse than break bones – they can stay with you for months, years….forever…When you think you’ve moved on from them they wake up with the baby at 3am and sit at the back of your brain. They cloud over your eyes as you try to focus on just enjoying a moment with your children.

So many times I’ve stood grinning ear to ear watching my son twirling or leaping or singing or drawing and suddenly horrible words said to me months before have jumped into my brain. They sit in my mouth as if I said them myself. I know they’re not true. And often the intent was never to hurt me. But they hurt nonetheless. I sometimes physically shake my head to get them to leave.

All parents have to deal with hurtful comments at some point. It seems to just come with the territory. But just because it comes with the territory, and it’s common, it doesn’t mean it’s OK. It doesn’t mean we should just accept it.

And cries of ‘just ignore them!’ do not help at all. If we could ignore them – we wouldn’t be upset by them. And the ‘who cares what other people say’ – often coming from people who say mean, shitty things and use that defence. Who cares what they say means who cares what I say and it’s so convenient to have no care for the impact of your words….

I’ve blogged before about my son’s health journey. I don’t talk about it much – it’s difficult to talk about. But his condition is behind one of the most unintentionally hurtful comments I’ve received – and that’s what I want to write about.

I got many comments on the Grateful post that wished for me to have sick children. If I had a sick child I’d shut up. If I had a child with a disability I’d be grateful for my “normal” kids. I was told I was a selfish bitch who should have a stillborn or have my kid die – then I’d stop complaining. Then I’d be a good mother.

A good mother is a mother who never complains. A good mother is quiet and meek. A good mother never, ever voices an opinion on anything. She lives for her child and never for herself and diminishes herself as much as possible. If children are seen and not heard a good mother is invisible as well as voiceless.

Here’s the thing – I knew the people writing those comments didn’t have children with disabilities or health conditions because of the language they used. For a start, parents of children with extra needs don’t call children without health issues “normal”. They don’t call children with autism “autistics” or children with delays or disabilities “deformed”, “dumb” or “feeble”. They certainly don’t use the term “crippled” or say “if you had an invalid”. Language is important here, and here’s why:

Our children aren’t their conditions.

Our children aren’t their health challenges.

Our children aren’t their disabilities.

They are children WITH conditions. WITH health challenges. WITH disabilities. But they’re not only that condition, that challenge, that disability. They’re not your inspiration. They’re not your sad story to tell at coffee group. They’re not your thing to shame mothers who share the difficulties of parenting with other parents.

I had many comments and emails from parents whose children are on the spectrum, whose children have disabilities, chronic health issues, and conditions that are both visible and invisible. They all talked about being silenced by others, not being allowed to express pain, frustration, fear, stress. The constant narrative that they should just be grateful their child is alive (particularly if the child’s birth was traumatic and dangerous or the child’s condition had a grim prognosis). That they had no right to be anything other than an inspiration to parents of children with health privilege. And if they’re not an inspiration, they’re a story used to encourage other parents to “be grateful”.

I see this a lot. It’s isolating enough when you are actually isolated – unable to leave the house at all because of germs and illness or the stares of strangers or the fucking unnecessary comments everywhere you go (“what’s wrong with his breathing? It sounds like he can’t breathe? Should you have him outside in this weather?” – I once had a woman peer into my buggy and say to my son “did mummy really have to drag you out today when you’re so sick? Poor baby!”)

But on top of that actual physical isolation – to be further isolated by being shut down every time you try to talk about what it’s really like for you on this journey? That sucks. And it’s not fair.

And people don’t mean to shut others down – but they do. With careless words. And we all do it – I’ve said way more than my share of shitty things. But I do my best to really listen when I hear what hurts others and  make sure I don’t repeat and use words and phrases that I know hurt.

My most hurtful thing that was said to me, that still comes up all the time in my head, and I know the person didn’t mean it the way I took it – but intent isn’t magic – was when I was pregnant with my second. I was asked:

Do you hope it’s not like Eddie?

For a second, I couldn’t even work out what they were trying to say. Of course I want my baby to be like Eddie? Huh? He’s perfect?

And then I realised. Oh, you mean, do I hope my child doesn’t have the same condition he does?

I think I was so numbed by the phrasing that I kind of just hurriedly said something like, it’s not genetic apparently, in any case, we would just deal with whatever happens.

Every now and then I watch my babies play and that comment pops into my head and I think oh gosh I hope so.

I hope Ronnie is bold and brave and kind and generous and strong and compassionate and sweet and gentle. I hope he can’t say “M”s and he says bechanics for mechanics and bachines for machines. I hope he loves twirling. I hope he shakes when he’s excited. I hope he falls over his words when he just can’t wait to tell me something. I hope he gently pats adults and children and says “you OK darling?” when he sees someone upset. I hope he calls me Dear Mama like Eddie does. And calls his dad Dadam. I hope he has his brother’s eclectic dress sense (sometimes). I hope he plays rocket ships and yells out THREE FIFE ZERO.  I hope he loves cuddles and snuggles as much as Eddie. I hope he will be his own person but I’ll be so happy if he has Eddie’s bravery and joyous and soft, caring nature. I hope he is described the same way Eddie is by the people who love him:

A precious, fragile but so resilient, wonderous, loving little soul.

Kids with health problems aren’t their health problems.

They’re not their disabilities.

They’re not their conditions.

Or their disorders.

They’re not their speech delays.

They’re not their learning difficulties.

They’re not their inability to focus.

They’re not their feeding tube or their noisy breathing.

They’re whole little people. Who have heaps to offer the world. They’re human beings who hear you when you talk about them and the things “wrong” with them.

There’s nothing wrong with these kids.


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39 Comments on “Careless words

  1. I’m sure it’s not intentional but I now have careless whispers stuck in my head. Ew. Thanks for that!

    I hope I have an Eddie of my own some day. He’s gorgeous in his personality. And he is uniquely Eddie. We should all aspire to be like him. Kia Kaha Emily, you (both) are doing a wonderful job x

    • I hope you have an Eddie one day soon. He’s pretty wonderful <3 and thank you x That means a lot x

  2. Not for the first time, your writing has moved me to tears. I love your work and I’m quite sure I’d be in awe of your parenting if I were to witness it first hand. Your babies sound utterly divine. xox

    • That’s so nice of you to say Rebecca. I’m just your average parent! But thank you. That’s lovely xox

  3. This is brilliantly and so honestly written, so refreshing- i agree people try instead of listening try to hush things down, cover up, dont speak up, express etc- thank you for doing these things in your article
    I appreciate this very much, thank you

  4. I have been blessed with an astoundingly able child. Who has grown like a weed.
    Thankfully, the fact he looks like a nearly 4-year-old is balanced by the fact he talks astoundingly well, so I dont get jerk assumptions about his development.

    But I’m a long-term proof that words break people. Too much of myself has been written off because of thoughtless, or purposely nasty things people have said to me. I desperately hope I can build my little up well enough that he can withstand those sorts of people.

    And, like you’ve said in other places, fuck this shit is hard sometimes. Regardless of what conditions our kids may or may not have. Regardless of whats going on in our lives.
    Why do some people have to keep trying to make things harder for everyone? What do they get out of it?

    • I don’t know. I think they’re probably quite broken so breaking other people suits them. I just don’t know. I’m sorry to hear you’ve been hurt by others. x

  5. When I read your writing I want to share it with all my mum friends so we can talk about the everyday, important things. You have this clear, honest way of speaking.

    • Thank you Gina. That’s nice of you to say. Thanks for reading and sharing 🙂

  6. Wonderful words about your sons. As a Special Needs teacher I come across a lot of parents like you who understand that their child is so much more than their label. So many people pigeon hole children by their label and it means they miss out on so much.

  7. Eddie is the best, and I can’t wait to see Ronnie & Eddie Vines. They need their own YouTube channel. I can’t be the only one that thinks that would make the world a better place 🙂

  8. Unless you have been a situation of overwhelming worry for your child it’s impossible to understand what it’s like to deal with serious health issues, and it’s also impossible to understand that in one mind at one time you can be truly deeply grateful for your child yet also truly deeply wish that what was happening to them simply wasn’t happening, or that they could be exactly the same but without the bodily flaw that is causing them horrible pain. A very wise friend told me that when it comes to mothering you simply can’t compare, no one will ever really know the extent of the challenges and internal pain you went through in parenting that child at that time. It’s changes you forever, worry like that. Yes we are grateful and each day with that child is a blessing, yes we are grateful that modern medicine saved her. Yes each child is absolutely unique, no one is without flaws bodily or otherwise, for we are living and human. Labels mean nothing, broad categories of conditions are meaningless. What matters are those who lived it together and made it through, and are making it through still. Some things cast a shadow forever but you have to live joyfully in the shadow though it made you more wary, more heart burnt, more aware that in real love pain and loss are very deeply interwoven with joy and gratitude. Bless those kids.

  9. I have a friend who’s LO struggles with sensory overload. He acts out sometimes, but he is an amazing little guy who loves others. He pushed a kid on a playground (twice unfortunately) but the mother shouted at my friend and said to her “There’s something very wrong with that boy!” She then followed her into the parking lot and shouted “I hope you’ll start teaching him some manner!” These words spoken to an amazing mother, already worried about what sometimes is going on in her 2 year olds head. What kind of woman (mother) says something like that to another mother? What happened to compassion and the understanding that all us mothers are on our own journeys here, all filled with difficulties and worries. The understanding that we are all doing the best we can? It made me angry. And Sad. People have no idea how their words affect others.

  10. Beautifully written and I could not agree more with the sentiment you expressed. I’ve been on the receiving end of many unwelcome, unkind, harsh, judgemental comments on my parenting – and by extension – my children and I know those comments can haunt the recesses of your mind even though one has dismissed them as total twattery and not worthy of the slightest consideration. People can be unthinking and not mean to offend or hurt but they do so precisely because they are thoughtless and lack empathy. The greatest gifts I hope to pass onto my kids are empathy and compassion and in doing so they will be better than so many of the adults who have snarked and sniped. My final thought on this is that I often diagnose in the people who make nasty comments that the very things they write are projections of their own angst. Let them sip their own poison then.

  11. “A good mother is a mother who never complains……”

    If I never complained about being a mom I would seriously be in a mental institution. That is not a joke. Being a parent is HARD. And the only way I am dealing with it is by complaining, which I think is more venting. I can’t bottle that shit up and go on with life, I need to cry, scream, talk about it. GET IT OUT. And then I feel better & Im good……until the next meltdown. And it doesn’t mean I don’t LOVE being a mom, it doesn’t mean I don’t LOVE my daughter more than anything. It means I am fucking human.
    In the early months of my daughter’s life I felt SOOO guilty for feeling ungrateful and like a terrible mother but I’ve come to realize ALL those feelings are normal and OK. Just not a lot of people talk about them. And that’s too bad. So thank you for talking.

    I’m so sorry there is nasty people out there that write those horrible things. I think that is the main reason I could never write a mommy blog. But I do try to be as honest as I can with everyone that I talk to. I really think that you are incredibly courageous and amazing for writing the way you do. And just know that for as many people that may ‘disagree’ with you I’m sure there are 10x more that agree.

  12. Someone once asked me “are you worried that your kids will be like you?” and I was hurt that they thought I was a terrible person and that turning out like me (a little untidy? a little too fond of cake?) would be a fate worse than death. Then I realised that they meant “are you worried that your kids will be gay” and I realised that in fact THEY were the terrible person.

    • FUCK THAT NOISE. People are jerks. And that is a horrible, terrible thing to say and they are horrible, terrible people. And you can never be too fond of cake xx

    • Haha! I would be tempted to reply, “No, but I certainly hope they’re not like you!”

  13. I fucking love you Emily. If you lived here I. Canada, we’d be friends. You’re an excellent mom. U rock.

    • Thanks so much Melissa – that’s so sweet of you to say! If I ever go to Canada I’ll look you up so we can have a wine!

  14. I’ve been saving this post to come back and read, and I’m so glad I did. I get that people who say shitty stuff like this often don’t intend to be hurtful or have never been in a the situation where they have had to cope with illness in a child, but like you say – intent isn’t magic. I don’t always know how but I feel like it is absolutely ok to call out that level of clueless assholery. Eddie is so, so wonderful and man I hope if we ever have kids that we have kids like him.

    • He’s pretty wonderful <3 Understanding that intent doesn't mean all that much when someone is hurt - that's a really important thing to understand. And it's big. It catches me up a lot. I think - "but I didn't mean to!" and that doesn't take away from the power of the words that hurt.

  15. Just stumbled across you blog when someone shared your sleep post on Facebook. It made me laugh and smile and that is pretty hard to do after the week we’ve had with our little man. Thank you for your honest and candid writing it is really refreshing to read. This post brought tears to my eyes, you should be very proud of your two boys. I hope my boy grows up to be every bit as delightful.

  16. This is ringing in my ears with truth (alongside the crying baby that has kept me awake for the last 7 month, ). The next person that offers “advice ” on what I’m doing “wrong” or why my baby doesn’t sleep will end up with an elbow in their head; many have been threatened with this technique, but I haven’t the energy or motivation to act on it!!!
    Apparently the ‘next one’ will be easier… JOG ON PAL!!!! The next one ain’t happening!!!! It’s gonna take far more years to recover from this one than I care to anticipate to consider ‘the next one’!!!!

  17. This post moved me to tears. I don’t have any kids, but I do volunteer work with children, Girl Guides and stuff. I do believe that people raising children should get more support than they currently get from society. People who make judgy comments about “disabled” children, would probably make similar comments about any child, and indeed about every other person on the planet who isn’t perfect, like they are.

  18. Man … One thing I never understand is people that write horrible things about wishing someone else would experience a stillbirth or “abnormal” child etc. That goes to show THEY mustn’t love children … yet they don’t get the irony?

    • People say awful things to others online. Stuff they’d never say to someone’s face!

  19. Emily, wow, I have goosebumps. You description of your little lad just totally brought tears, and that never happens. I’m really glad your post about getting the baby to sleep popped up in my feed, and that someone else mentioned it in Brunch-club. I love the way you write. I’m a Kiwi blogger/mum (in Auckland), and I am just gonna HAVE to add you to my blog roll. Beautiful beautiful post xx

    • Thank you so much <3 that's very kind of you to say. Looking forward to checking out your blog! Thanks for stopping by 🙂

  20. Another great post. My son has a severe speech delay and possible ASD and your post really touched me, like most of yours have actually. There really are some ignorant people out there and that’s a shame but you are right, our children are not just their disability, they are so much more than that, and what the hell is normal anyway?

  21. Your blog was shown to me by another mum who graciously showed me empathy during a hard time with my baby. Your words have made me laugh, cry, feel normal, feel relieved at times, and hopeful. Thank you so much for your honesty in motherhood. You’re a true inspiration xx

  22. Edit: I realized I used the word “normal” in my post…but what I meant by that was “accepted” and “understood”. I hope that was the message that came across, especially considering this was a “careless words” post! Anyway, thanks again for all of your blogging. It’s truly wonderful.

  23. I understood what you meant ❤️ Thank you so much for your comment and thanks for reading x