I collaborated on this article with the wonderful Kyle, whose writing can be found on http://discussingthedis.wordpress.com/. We both describe waking up at university and a simple, five minute journey to the Student Services building from the perspective of our disabilities. I often wish my autism was more visible, or at least that the issues surrounding it were more universally recognised; whereas Kyle feels his disability is constantly on display, which makes it harder to interact socially. What I really wanted to highlight is that there is no such thing is a disability hierarchy. No one disability is better or worse than another, each comes with its own unique set of challenges. It’s just human nature to think the grass is greener on the other side
Anyway… without further ado, let me and Kyle take you through our day.
bold=autism italics=cerebral palsy
I hear a knock on my door, the Carer comes in and asks me if I’m ready to get up. This Carer is not the gentlest woman. She drags my bed away from the TV (I sleep close to the TV so I can operate it with the remote device in my phone). She hands me a cup of coffee and puts pills in my mouth. No ‘how did you sleep?’ or ‘how are you feeling today?’ I finish my coffee as the Carer fills a wash bowl ready to wash me. I tell her I’m done, and smile at her in the hope of some human engagement. When I make a joke to lighten the mood, she gives me a courtesy chuckle and it’s down to business.
I shut my eyes, trying to recapture the wonderful dream I was having (slaying Orcs with Aragorn, Legolas and Gimli in Lord of the Rings). But I’m awake now, and I’ve got an appointment at the Student Information Centre in half an hour. I’m already breathing too fast, my heart thumping against my rib cage. The outside world is too much- a cacophony of terrible sounds, bright lights and jeering faces. Give me a legion of Orcs any day. I don’t have to try to understand what they’re thinking and feeling. I can just kill them. I walk to the bathroom, brush my teeth and splash my face with cold water.
I’m naked and the Carer starts washing my body. No kidding, this Carer treats my body as if it’s a “thing”, not a person. I wouldn’t mind if she was a bit friendlier. I like my care done quick and don’t care for the kid gloves approach. I’m used to strangers not only looking at my man region but handling its occupants and washing them! To say to someone like myself ‘it must be great having people do everything for you’ is stupid and untruthful. There’s nothing sexual or pleasurable about having Carers wash your private parts. It’s just part of my routine. Now it’s time for hoisting! This part is fun especially with my dodgy stomach. Basically in order to get me in my chair I have to be put into a sling and that sling is then attached to the hoist and the hoist SLOWLY lifts me into the air and then I’m moved towards my wheelchair.
I stand at the front door, half my face obscured by dark glasses, trying to slow my breathing. In. Out. In. Out. Ignore all the different sounds you can hear, pressing on your brain like a million sharp needles. I stuff head phones into my ears and turn up the i-pod to full volume. Evanescence. Not heavy enough for the metal snobs, but just a little too heavy to talk about with my blonde haired, Beyoncé loving uni chums. Somewhere after the first chorus of “Bring Me To Life” my breathing slows and I’m ready to set off. It doesn’t even matter what I listen to for the rest of the day, just as long as it’s loud enough to drown out any other sounds.
So I’m up, I’m dressed. My carer gives me my phone and the remote which operates the doors to my accommodation. I set off to the student information centre. I really hate this weather. As a result of my disability my muscles get extremely tight. Especially in the cold and when I’m tired and stressed for that matter! As I may or may not have already stated I’m not in any way a morning person, after I’ve been thrown about to get dressed I’m tired, I’m annoyed, I’m stressed about work and now I have to faff about with this remote! I manage to open the door, and once I’m outside the cold stings my muscles into submission.
As I walk through the Performing Arts building I can sense “the pretty people” staring at me. One of them, a blonde wearing a skin tight black leotard walks over and declares that I must be a vampire because I’m wearing sunglasses even though its winter and I’m indoors. I look at the ground, mumble something about light sensitivity and walk off as fast as I can. Fuck sake. Under any other circumstances she would know that personal questions about somebody’s appearance are not ok. But apparently it’s fine for complete strangers to ask about my sunglasses! I’m not wearing them to look cool and Gothy. I’m wearing them to minimise sensory overload- an inevitable part of the disability I was born with.
I take my route through Performing Arts, which is indoors so it’s a bit easier for me to drive through. My muscles tense again when I feel the eyes of “the pretty people” on me. I feel very self-conscious about how I appear, even more so going through Performing Arts because you often have a lot of attractive women in yoga pants and looking all… you know. Plus the men are generally ripped and all confident. And I look physically “abnormal”. I try my best to get through the building without being noticed, but it’s not easy
People keep staring, and even through the lenses of my dark glasses their direct eye contact makes me feel uncomfortable. I imagine the crowd of students pouncing, all at once, and tearing out my throat with their nails and teeth. I know this will never happen. I know I’m scared because of the primitive reaction of my limbic system: animals only look each other in the eye when they’re preparing for a fight, so my body is pumping itself full of adrenaline, ready for the fight that will never come. Of course, this knowledge doesn’t make me any less scared.
From Performing Arts I’m back out into the freezing cold. I trundle towards the Student Information Centre, trying to avoid people who might accidentally walk into me. (I always apologise when people walk into me because they’re generally mortified with themselves and act as though they’ve seriously injured me, when all they’ve done is brush against my chair).
I reach Student Services, go to reception and ask for my Learning Facilitator. I’m met with pursed lips and a slight frown as the receptionist tries to work out what’s wrong with me. I’m clearly not blind and I can walk just fine, why am I eligible for extra help? I sit down and spot the “metal head” that lives in my halls, parking his wheelchair at a table and leaning back comfortably. I feel a stab of envy when I notice how the other students in the building step carefully around his wheelchair and avoid looking at his stiff limbs. No staring. No awkward questions. At that moment I wish I had a more visible disability.
I get to Student Information Centre. I know the staff so I feel safe. What is funny though is that it always feels like I need to find a seat because me parking somewhere might mess up the “feng shui” of the place. Once I’m in the building I just text my Learning Facilitator and then it’s off for” a few hours of intellectually stimulating lectures (sarcasm detected) or some reading for whatever essay I’m meant to be writing. I spot that alternative/geeky girl who lives in my halls. She strides up to the front desk confidently, i-pod blaring, sunglasses on. I feel a stab of envy when I notice how other students don’t avoid her or freak out when they brush past her. At that moment I wish I had a less visible disability.