I don't because I know.
My brother is severely autistic. In his 22 years he's never told me he loved me, or that he hated me. He's never said a thing to me. In fact, there's never been a single way in which he has verbally communicated with me. And yeah, that sucks.
When he was 19, he had his first epileptic fit. My mum was running out in the road, terrified, crying for help because she had no idea what was happening. And I wasn't there. I was told that he had epilepsy and I learned what to do in case he had a fit in my care. And I learned.
One day, I came home from working a breakfast shift at my job. I'd been up since 4:30am and I was tired. Then my mum went to work and asked me to look after him. I fell asleep. Whilst I was asleep, James had a fit and we found him by the door, not knowing whether he'd hit his head on the handle and knocked himself out, if he had a concussion or whether he would even regain consciousness.
I have never felt so guilty in my life.
Since then I am terrified to be alone with him. I actively avoid babysitting duty with work or social activities. People say it wasn't my fault but I can't accept that. I know that my mother will never forgive me. And I know I can't fix that.
Fast forward three years and my brother has regular fits. But now he doesn't live at home and has had two accidents where during fits he has sustained open wounds to his head. One was stitched, the other was glued. The first time, I was at university. The next day I was told by my parents, who told me not to worry, but he'd had to be sedated and have seven stitches in his eyebrow, and I cried for an hour. All the guilt from the morning three years prior came flooding back, and I couldn't believe I hadn't been there for him. His only sibling, and I failed him.
Three weeks ago, he was back in hospital again after a similar injury. I went with my parents, determined to see for myself what I would have to deal with when they aren't around. The car journey was full of nervous energy and stilted conversation, not knowing what we would see this time. Parking the car was a battle of wills between parking meters and the need to be there, to understand, to know.
He was covered in blood, from head to toe. The wound was deep, oozing crimson and he was distressed. For some reason, my instant reaction was to get the wet wipes from the bag of things we had brought and start cleaning his hands. My mother was visibly distraught, my father was practical as ever and my brother's favourite parent. I cleaned his hands and face, murmuring platitudes and nonsense as I started his DVD player and sang along to Thomas with fake cheer, all the while obsessively cleaning his hands, face and head.
Time passed and we were stuck in a room, my family and the carers. We cracked feeble jokes and made banal chat about nothing, with pit stops for hospital coffee from a rickety machine.
Nearly two hours passed without attention from hospital staff and I became antsy.
I became fixated on getting my brother treated. I stormed out of our room and asked a nurse, kindly but firmly, when we could expect to be seen. Refusing to be fobbed off with transparent excuses of "You're next on the list" or "Five minutes tops", I bothered the staff until a doctor came to see us. The doctor in turn brought in a nurse, who assisted in gluing up the wound.
You might wonder why this is relevant to my point, but really it's simple. People complain that it's hard to be a parent and to be responsible for a living person, but the fact of the matter is that I've been doing it since I was three years old. So next time someone makes light of disabilities, or is insensitive about similar issues, I hope you refer them to this post. Because for my family, life isn't fun and games. It's struggle, hardship, and the diamond glimmers of happiness and joy within the darkness of self-doubt and fear.
So next time you're tempted to make a joke about "spastics", "retards" or any other derogatory word, please take a moment to remember that for some families, it's not a joke but a reality. And it affects us more than you know.
