The feeling of being ignored is a privilege I now appreciate I’ve always taken for granted.
My only child, my son was born with severe deformed right leg and hand.
The right foot was short, small with only two toes and his palm had five fingers all fused together and half the size of his normal hand.
Eventually below the knee amputation was suggested for him. At the age of 13 he learnt to walk with the help of a prosthesis, before amputation also he needed a prosthesis but that was painful and was diagnosed that it would harm his hip bone and eventually he wouldn't be able to walk. So we went for amputation. Now it's all like normal. For his hand, the doctors said that since all the fingers were fused together and were missing individual bones nothing could be done. Luckily, one finger had all the bones, so they seperated it and created a thumb for him so he may ride a bike or handle a tool if he wanted so.
I still remeber when he was a kid. His first day at school. His walking with prosthesis, his non normal hand, were all enough for other kids to trigger me with questions.
Whenever I traveled with my kid I just couldn't bear the stares of fellow passengers and there questions. It always hurt me when I saw my son hiding his right hand in his pocket and shaking hands with his left hand.
But that was past. My son, now 21, has learnt to deal with all his difficulties and is in college. He has his own YouTube channel. Has many reel time and real time friends and he's among toppers in his academic career. Now he doesn't hide his hand, in fact he shakes hand with his right hand and answers all the questions with ease.
In short, he's capable of doing all that a normal kid can.
Thank you for writing this, Stuart. We have a little girl (just 3) who is missing her right hand and forearm.
What you’ve said resonates with me hugely. The 20 week scan was a bombshell and I was utterly unprepared. Since then, I’ve become used to her “difference” and she’s a gorgeous, perfect happy little thing.
However, I’m certain that this is the honeymoon period and that things will inevitably get more challenging. I like to think that I will be calm when people stare or are unkind but I’ve already felt myself becoming annoyed when others stare.
I want nothing more for my little one than being happy and positive and hope that she doesn’t let her “little arm” (her name for it) define her. She is an irrepressible little soul at the moment and I hope she keeps that positivity.
I hope the same for your lad too.
Very interesting article Stuart. I have cerebral palsy and had to go through numerous uncomfortable situations as a kid. One thing my parents instilled in my was that I was a normal kid just like everyone else. Yes, I had to do some things a bit differently but I often learned to joke about it. What I found was the staring and bullying primarily came from that person's lack of knowledge and understanding that underneath we are all the same. I'm afraid that this sort of behaviour is something that cannot be avoided. As a parent the best thing you can do is give you son the skills to cope with it and make sure he feels loved no matter what! My current challenge is how I deal with a own children's friends in terms of comments they make on my disability.
Thank you for sharing your story Stuart. It's great to get the perspective of somewhat standard experiences when approaching unordinary circumstances, and it seems that you have the right mindset going into this. Keep thinking critically as you approach situations, and you'll continue being a positive role model for your child and many others!
I appreciate you sharing your and your family’s story, sir. You hit on a lot there, especially the rage aspect - that is completely normal to feel, by the way. It reminds me of a line by Philip Larkin: “ We Should Be Careful Of Each Other, We Should Be Kind While There Is Still Time”.
Thanks for sharing your story Stuart. I enjoyed reading it after the morning feed of my daughter and smiled at reading your little one's extrovertedness is causing you to have to step out of your introvertedness. It's always the way, isn't it? 😄
This resonated so much with me, Stuart. Thank you for writing this piece.
My daughter Em turns three in a few days. She has severe cerebral palsy and is unable to walk. So most of the time when we're out and about she's in her custom stroller, which is basically a fancy wheelchair. Then add in the fact that we have to feed her through a tube with a giant syringe and you can see why we get stares all the damn time. It makes us feel like zoo animals or a trainwreck people can't take their eyes off of.
I totally get your wish to go back to being invisible. Trust me, as a pretty normal-looking white dude, I can relate. But I'd rather people come up to us and ask a thoughtful question about her disability instead of staring and diverting their eyes when we look their way. We've had some great conversations with people who have asked questions. It's not only less uncomfortable, but it's also an opportunity for people to learn more about a disability they might not know much about. This is also part of why I'm writing my family's story in public—to create a little bit more empathy in the world.