The joy of not knowing
And being okay with it
Today is the last day of April, which means it’s the last day of Limb Loss and Limb Difference Awareness Month. I have been posting about this in my stories on social media, and just wanted to do a little reflecting here before we move on to May. These opinions are my own, as a non-disabled mother of a disabled child, and other people may feel differently. Feel free to message me or reply if you want to continue the conversation.
The reason this month is important to us, as a family, is because my son was born with an upper limb difference and I volunteer for Reach, a charity that supports children with this condition. Reach do brilliant work for children with this physical difference. Seeing another child that looks like you, in a world where differences are not seen as ‘normal’, can be life changing. Finding a community you can feel comfortable in to be yourself is so important for us all.
My son also has developmental delays, which means he is not totally aware of his difference, but is starting to notice. This is bitter sweet for us, as we’re so glad he is growing up (when you have a kid with global developmental delay, you don’t find yourself wishing they’d stay small forever) but also, we know how hard it will be at times, for him to constantly be reminded he’s different, by a society that was built for people with two hands. This means that right now, myself and my husband, as well as his other carers, advocate for him. We have an important task on our hands, trying our best to ensure he grows up to be confident in dealing with any obstacles he may face. Not due to his own limitations; he has proven to us over the last 5 years that he is perfectly fine getting on with it and figuring out his way of doing things. That’s all I’ll say about my son. I try not to discuss our personal situation too much, because, like everyone, he deserves privacy.
Something that has been on my mind a lot this April, is ours, as a society’s ‘need to know’. Children, and adults as well, ask a lot of questions, which is brilliant. I love a curious mind. But I believe that, particularly as parents, we need to start normalising, ‘I don’t know’ as an answer. Why is that person in a wheelchair? Is that a man or a woman? What happened to his arm? We’ve been living in a world where the struggle for acceptance of differences landed in a place called ‘Asking is Better than Staring’. So instead of your children staring at someone wondering what happened to them, its best if we just go and ask them what happened to them. But hang on, how about we just live in a space where we don’t know something, and we feel totally comfortable with that? Because guess what, it’s totally normal not to know everyone’s medical history.
This is something that also occupies my brain A LOT as a children’s illustrator. This child must have long hair and eyelashes so we can tell it’s a girl. Wait, what? Why do we need to know it’s a girl? My son has the most beautiful eyelashes and there are many, many boys with the most STUNNING luscious hair I could only dream of. Luckily things are changing in this industry. Since posting about my links to LLLDAW so many of my friends have told me about a character they have recently included in a book with a limb difference and/or a prosthetic limb. This is of course brilliant, because #representation. I really hope that creating picture books that reflect the wonderful diverse world we live in will start to open up some of these conversations, that parents can find difficult to navigate, in the safety of your home. Next time a child points at an illustration of a person with a physical difference or asks if its a boy or a girl, let’s practice being okay with saying ‘oh I don’t know, and that’s okay’. Explain that everyone is different and offer general reasons why someone might be in a wheelchair or has a prosthesis, but we really don’t need to know what happened to that specific person. It’s actually quite intrusive and can be very exhausting for a person to be constantly asked about something that may be traumatic to relive.
As a disability ally, I feel it is important we have discussions about this, and I believe it is our obligation to take on some of the emotional labour in order to help shape society into a truly accepting place. Of course, there are many, many people sharing information about this issues that have lived experiences, often decades of experience answering our unsolicited questions. Here are a few I’d like to highlight, and I really hope you are able to spend some time reading their posts and absorbing what they say, as they continually spend a lot of time and energy creating this content.
Firstly, The Catchpoles. Their brilliant book What Happened To You came at the perfect time for us, while my son was small and I was asking myself how I want to parent my child with a physical difference. Please go get this book and follow them on social media. Lucy has done a brilliant series on IG called Intrusive Questions Fortnight, and created cards which we can hand out to people that ask intrusive questions. The cards contain a QR code that links to here:
And here you will see many reasons why maybe you don’t need to ask the question. They have also included a section of the website that offers advice to you as a parent, when your child asks intrusive questions.
For someone with a disability, especially an upper limb difference, even handing out these cards can be traumatic. Wouldn’t it be great if they didn’t have to? But until then, I have no problem taking on that job and helping spread this message. It’s the very least I could do. Please take a look at that link and read the experiences that are included there. So many people have put so much energy into creating this brilliant resource.
Author Jen Campbell talks very openly here about the struggle of having to relive the trauma every time someone notices her difference. It’s really eye opening and I’d love for you to read it.
Nina Tame is a disabled person raising a disabled child and all her posts are gold. If you want to do some unlearning please take a scroll through her grid.
And for Limb Loss and Limb Difference awareness month, here are some brilliant people and companies that are doing a really wonderful job in this space:
Reach - I really don’t know where we would be as a family without them. Last year we attended the annual weekend conference. A whole massive conference hall filled with Reach kids and their families. It is so overwhelming to see your child running around playing with other kids with similar differences. My daughter doesn’t have a limb difference, and for the first time in her life, she was the odd one out. So a really positive experience for everyone.
A UK national disability sports organisation to support amputees and people living with limb difference to regain mobility and fitness.
Koala make soft prosthetics for upper limb differences. We don’t yet have experiences of using prosthetic limbs but from what I know so far, I love that these days they don’t serve the purpose of hiding a limb difference and pretending to be a full limb like the dark old days, they can be functional, like an adaption for a bike or to hold cutlery. And also, even cooler, they can be for aesthetics, but the stand out, be proud and look different.
When I think of prosthetic limbs that stand out and look awesome, I think of the Hero Arm by Open Bionics. I love that we no longer expect limb-different people to hide away and keep their hands in their pockets so as not to cause us discomfort. Oh but hey, just because someone is proud of their limb difference it still doesn’t mean they welcome personal questions about why they have the difference. Tell them their Hero Arm is cool, by all means. Of course, this is a personal choice whether someone wants to tell you about their personal medical history, and some people may be willing to share and educate, but it’s not an obligation (one more time for the people at the back).
Tilly is a total cutie and brilliant role model for young people living with physical disabilities. Her Instagram is a delight and I’m sure you’ll see her on the telly at some point if you haven’t already.
Another brilliant charity that supports all people with limb differences and limb loss.
Thanks so much for reading, I really hope you have find this useful.
Thank you so much for this post! My littlest has a congenital anomaly. Most people don't notice but at some point in the future I know he will face questions from those who do notice. This is so incredibly helpful for me as a parent not quite knowing yet how we'll navigate these future moments <3