In response to stares
Having spent 24 years developing ways to guard Tom, her brother who has autism, Laura discusses the perception and action of others towards them in public, how her responses haven’t always proved effective, and the lessons she learned as a result of reactions.
Phase 1: #EyeOfTheTiger
Picture me as a stroppy teenager, heading down to Tesco with my brother. He loves it there: the chocolate, the crisps, piles of DVDS. At the time, Tom was obsessed with Tomb Raider, the PlayStation game, and would often enter stealth mode, lay on the floor and army-crawl along the floor; hunting tigers, of course. Would he get odd looks? Plenty, they were expected by this point and didn’t bother me much. I giggled along, even encouraging his moment of imaginative play by accepting my role as the tiger. Enter: nasty woman. “You people should be ashamed of yourselves. Put some dusters on his knees so he can earn his keep. F*****g mongrels should be put down at birth unless you find a use for them.” Quite suddenly, I took my role as the tiger a little too seriously. I verbally berated this woman’s cowardly attack on my brother. It was pure, unadulterated rage, and my mortified mum had to step in and calm me down.
The result? My brother was upset, my mum was upset, I was upset and this lady continued her shop without a care in the world.
Phase 2: #NotMyProudestMoment
It’s a little difficult to share this one, but it felt so good at the time. Our usual hunting ground: Tesco. Mum pulled in and parked along the blue badge area, well within her rights. One step out the car (if that) and we were immediately confronted by a man supporting a lady in a wheelchair, presumably his wife. Man: “You don’t need to park there, you all have legs don’t you?!” Mum: “Yes, but for my son to be safe we need to park close to the building; he has no road awareness.” Man: “Well, leave him at home then. Shouldn’t things like that just sit and watch TV or something?” They walked off with me in tow, fast-paced and shouting at them for such small-mindedness. If my brother was such an inconvenience or insult to them, perhaps his wife should be at home watching TV, or perhaps never leave home because parking spaces were such a burden on society.
The result? Lady starts crying, man starts yelling, I feel ashamed and we all go home upset.
Phase 3: #ScreamItFromTheRooftops
I know I said you get ‘used to’ the funny looks but, after such a long time, your patience struggles to hold on. I understand people’s curiosity, but outright staring at the unique physical characteristics of a person with complex and profound learning disabilities? There is a distinct difference between curiosity and judgement. People are not zoo animals, people are human. So, the comeback I often stop myself from giving tends to fall in line with: “Would you care for a photo, an autograph? I didn’t know you were a fan, you must have seen us having a swim last week, giving zero f**** about what you thought was okay to stare at?”
It’s tough sometimes, but the urge to shout these things from the rooftops become impossible to suppress. The result? You achieve nothing but loud accusation, nor does it tackle the problem of isolation amongst people with learning disabilities.
Phase 4: #EducationEducationEducation
This one worked for me on several occasions, but it’s to be done carefully. My friends and I took my brother to a local bonfire and fireworks show. Tom was fascinated by fire and, when we arrived, he immediately went and sat right by the barrier; humming away peacefully, flapping his hands in front of his face while studying the flames. A young boy and his mother were sat next to us; the boy asks: “Mum, what’s wrong with that man?” The mum replies: “That man’s a retard. He’s not supposed to be here, it’s a place for children to play, not people like that.” Here I was, ears pricked and waiting, hoping for a lesson to be learned for the little guy, alas I was left bereft. So, ignoring mum, I knelt down beside the boy and told him: “That’s Tom, and he looks at the world a bit differently. He really likes the colours of the fire, and he hums because it makes him feel more comfortable in crowds.” The boy smiled at Tom, before the mum started telling me off for talking to her son. “Okay, mum, the issue here is that your son asked an understandable question that deserved a gentle response, yet what you just said to him is one of the reasons why the world sometimes goes backwards. Ignorance begets ignorance; educate yourself, ask me questions if you must, but don’t you dare teach your child to be judgemental like his mother.” This felt like retribution, and she looked as though a big, wet fish had flown through the air and slapped her square in the face.
The result? Tom enjoyed the show, I felt a little better, but I doubt this was the way to encourage a young boy to be more open-minded. It felt like a start, it felt less aggressive, but looking back I would have done something a little different.
Phase 5: #LetItBe
Here’s the big revelation: after years of trial and error, I have found that the best line of defence is to just let it be. Each and every situation is different, but stares top the tally. My reaction now has become quite simple – I smile, beam with pride and continue chatting away to my brother or the person I’m supporting. I don’t stop; I don’t hesitate; I don’t acknowledge comments when we dance in the cinema, or have conversations with a bowling ball. I project myself outwards and cover both myself and the person I’m supporting. This is our bubble, and I’ll be bigger, louder and funnier just so I’m the one they stare at instead. Go ahead and stare, we’re fine doing our thing. If you want to ask questions, I’ll welcome you with open arms and answer as best I can. If you want to spit ignorance, intolerance and impatience, remember we’re a sensitive bunch of people and it’s crucial that our main focus is to make sure everyone has a great time, every single day.
If you can’t accept this approach to life, that’s your loss, not ours.