By Kirsty Moore, guest blogger and mum of Larni, 14.
When you have a child with disability, you tend to hear some truly ridiculous things. From the downright rude to the more socially insidious comments - most of us have heard it all.
In this blog, I’ll go through some of the things that often make parents of people with disability bristle and give you some ideas of what to say instead.
Before we dive in, I just wanted to say the intention in which something is said is often so much more important than the content. We all make slight social faux pas from time to time so if you read through this list and think ‘oh dear, I’ve said that’ - I promise it’s ok. In the wise words of Maya Angelou: "Do the best you can until you know better. Then when you know better, do better."
1. I’m sorry
Sometimes when people hear that your child has a disability, they treat it like an awful thing - like your child is a tragedy that has befallen your life as they rain all the pity they can muster down on you. Of course, having a child with disability can be hard, but this is a person, a person who is here and a person who I love.
A good friend of mine vividly remembers when her son was born. Her son has down syndrome and she recalls every doctor coming in and treating it as though it was an awful, terrible thing. Sure, receiving a diagnosis is an intense thing to process (and we don’t want to minimise that), but as my friend puts it - she just had a baby! She wanted to enjoy those first days. The diagnosis in no way changed the love she felt. Having her baby in her arms was one of the happiest moments of her life yet everyone was treating it like it should have been one of the worst.
Also, some people can feel awkward in this situation. You never know what you’re supposed to say back? “It’s ok”? “Don’t worry about it”? If you wouldn’t apologise to a parent of a non-disabled child you shouldn’t apologise to us. You can empathise with any hardships we are going through but please don’t apologise just because my child exists. There’s simply no need.
What you can say instead: ‘How are you feeling?’ This way you won’t assume their feelings and they can set the tone.
2. What’s wrong with them?
Nothing is ‘wrong’ with them.
Disability is a normal part of life. It’s a difference. It’s just the way some people are.
Even worse if this is said in front of your child. I often wonder about the damage that going through life constantly hearing this does? As parents we never want our kids to internalise that there is something inherently wrong with them, yet people with disability are constantly hearing this.
Nothing makes me bristle more than when the checkout person, or someone passing us by makes a point of coming up and asking this. Also, 99% of the time it’s none of your business - especially if you are a stranger or a casual acquaintance.
Of course, sometimes the person asking this is a child. Make sure you check out our blog on how to speak to kids about disability.
What you can say instead: ‘Hi!’ (or any other socially acceptable small-talk).
3. Wow, I don’t know how you do it! I could never do what you do.
Look - I promise, you could and you would.
Us parents of people with disability are just like any other parents - trying our best. We aren’t other worldly super-beings selected for our excessive skill and patience in the parenting arena (just ask my kids). We are all just doing the best with what we have.
I genuinely believe that this comment comes from a good place. I know that it’s meant as a compliment, but maybe next time just give the compliment instead.
What you can say instead: ‘You’re doing a great job’. ‘XX seems happy today’. ‘I love seeing the love you two have for each other’.
4. Have you tried…?
Yep. I can almost guarantee I have. As parents of people with disability we often fork out a lot of time and money to see a myriad of specialists and do the best we can for our children.
Like just about any parent ever, advice is something we get in spades and largely ignore. Sure, my child’s needs might be a bit more niche, and I may have a few more appointments in our calendar, but unless we ask for advice, best not to give it.
What you can say instead: ‘What have you been up to?’
5. I’m sure they’ll catch up.
Sometimes they will, but often they won’t.
I know this is meant well, but it can be quite dismissive and often untrue.
Part of being a parent to a person with disability is reframing expectations. Often we are hardwired with a set of ‘default’ expectations on what our children will do. Just like parents of non-disabled children, you can have all the expectations in the world but your kids are always going to find a way to surprise you.
Maybe a child won’t learn to speak, but that doesn’t mean they won’t be able to communicate. And maybe they will have some difficulty learning but that doesn’t mean they won’t get a job. And maybe they might relate to others a bit differently but it doesn’t mean they won’t find love and friendship.
Everyone is on their own path and if it takes my child a bit longer and a bit of extra effort - that’s ok.
What you can say instead: ‘What is XX interested in?’
6. Is it hereditary?
No one wants to share their private medical information.
The only way this is acceptable is if it’s a family member asking - and even then you need to tread carefully.
As parents we often find a way to let the guilt and blame creep in no matter what it is. This question, even when asked innocently enough can subtly imply that it’s the parent’s ‘fault’. Disability is normal - it’s a part of life. Whether it’s hereditary or not is largely irrelevant to most people.
What you can say instead: ‘Oohhh I see you’ve got mum’s eyes!’
To me, this is the one that can hurt the most. When people avoid you or stop calling. Maybe they are worried about saying the wrong thing? Maybe they don’t know what to do?
Like any parents, having support around us is so important. Love, friendship and connection is crucial and it can be immensely difficult when that stops.
Even if you’re not sure exactly what to say, often just being there is enough.
Instead: Just be there for your loved ones like you always have.
Overall, inclusion is one of the biggest challenges faced by people with disability. I believe it is important to be more open with people with disability and where it makes sense, introduce yourself, say G’day. Even a few minutes of your time will mean the world to a person with disability. It's that simple!
Now you know a little better, go forth and do better.
Is there anything you think that needs to be added to the list above? Or do you want to feature as our next guest blogger? Let us know by sending an email to our team at firstname.lastname@example.org