Disability Nexus

Inclusion has come a long way.

I attended an elementary school in BC in the early 1970’s as a ward of the Province. At that time, inclusion meant the public school system, but a separate classroom and curriculum. All the children with a recognizable disability were in the same classroom. At recess we segregated ourselves. It was a BIG deal when early in grade five, I was finally admitted to the “regular” classroom. My peers had been prepared for my arrival by a well-meaning system and teacher that failed to take into account my feelings as the “object” of discussion. I wasn’t present, so there was no initial opportunity for my classmates to ask me questions about my disability. There was no attempt at real ice-breaking back then, though the teacher tried very hard to make me feel welcome. Still, I had to deal with some teasing and bullying, both subtle and obvious. The other disabled kids bugged me because I was in a “regular” classroom, therefore I must be the teacher’s pet. And the able-bodied kids only associated with me when they needed my help in class; they wouldn’t have anything to do with me in the hallways or at recess. I wasn’t the kid that got invited to all the parties.

I was also the only kid confined to the school property during lunch and recess. The rest of the school could head to McDonald’s or the 7-Eleven, but due to liability issues, I had to stay on the school grounds, constantly dogged by my adult attendant. How embarrassing for a kid, especially during the sensitive preteen and adolescent years, to have the ball-and-chain attendant that had to accompany me to class, and even the bathroom! My loving foster-family provided a stable home environment, but I was still insecure and anxiety-ridden to the point that my social competence was hampered.

On one hand, I really wanted the chance to do my own thing in order to gain some confidence and self-esteem; but on the other hand, there was a fear of the vulnerability that came with being alone. I didn’t have much experience being alone… What would I do in an emergency? All in all, my school experiences, both good and bad, helped equip me for adult life, particularly my role as a Family & Individual Support Worker.

MORNING

I’m usually awake by 7:00am, but my day typically begins at 9:00am. So I have a couple of hours to distract myself from thinking about my full bladder. I do that by planning my day: are all of my arrangements in place? Transportation, meals, bathroom breaks, cell phone charged, water available, the list seems endless sometimes, but the day’s accoutrements all need to be ready, and it’s my responsibility to see that they are. I don’t need a full two hours to mentally line up my day, and that’s where Rocket, my crazy cat comes in. He keeps me occupied, often by washing my face and hands, kitty style. That’s fine, but sometimes he also heads to the bathroom and flushes my toilet, which isn’t so fine when you’re lying there needing to pee…

Once my attendant arrives, I’m hoisted out of bed, and prepared for a shower. Now, I am not a morning person, so it must be hilarious to see me, a bed-headed spastic quadriplegic, still drooling with sleep, dragged all snoring and crusty-eyed to the shower. It is only after the showering process ends that I begin to feel human. After showering, it’s on to the dressing routine, which is a unique experience each time. It seems my attendants still have difficulty understanding the concept of “left leg” and “right leg” when I’m being dressed. I hope they will understand soon, because sometimes I feel like a chicken being trussed for dinner. On occasion my friends tease me because they can tell who got me up on any given morning, since each attendant has her distinctive style. I guess they never played with dolls when they were kids. Anyhow, after I’m dressed I eat my breakfast and brush my teeth, then rush out the door, like just about everybody else. I hate breakfast, but I eat it anyway, because of my active lifestyle.

It is busy by necessity and design; besides my job as Family & Individual Support Worker for a disability organization in the BC area, there are volunteer activities, a social life, managing my attendant care and CP, which means regular trips to the gym, swimming, and various other therapies, and oh yes, I’m also a University student… Seems there needs to be two or more of me these days; or I need to be Super Quad. Super Quad is very popular now; until a totally inclusive society is as much a reality as it can be, there’s always a new issue up for debate or advocacy.

COMING AND GOING

I’m lucky; I can do a lot of my work from home, but even so I’m at the office several times a month for meetings, administrative catch-up and so on. “Off to work” means relying on accessible public transportation, and that means having other people prioritize my request for a ride. It can also mean a substantial wait, so I make sure I’ve got a book, or some paperwork along. I also need to think ahead to the actual bus stop: is there a shelter where I’ll be waiting, or will I be at the mercy of the city's mercurial elements? I’m not very waterproof…

On gym days, those that don’t recognize me try not to stare, but since we’re surrounded by mirrors, their efforts are both pitiful and funny. I usually ignore them and go about my own business, but once in a while I get to show up an upright, my term for those of you who are able-bodied. I like to throw a monkey wrench into those preconceived notions of what a person with a disability can accomplish. It’s fun, and I try not to gloat.

I’ve had quite a few years to develop the sense of humour that helps me deal with the attitudinal and systemic barriers that still prevail. As a kid, I hadn’t yet accessed this important tool, and so dealing with inclusion – and exclusion - was a hit and miss proposition. Disability is a fact of my life; inclusion needs to be a fact of life, too, but not one that demands we all become Super Quad, or get pushed relentlessly into the “normal” end of the ability spectrum. My disability is part of who I am but it doesn’t define my personhood. My hobbies, interests, and relationships supercede the limits of my physical disability. The support of friends, family, and professional relationships has allowed me to focus on my strengths while acknowledging the presence of weakness.

CHAOS WITHIN ROUTINE

Just when everything is running smoothly, along comes an early morning conference, course, or speaking engagement. This throws everything in disarray and necessitates a quick change of plans for everyone. Not only am I up at the crack of dawn, but my attendants scramble to get me ready in record time, and some of them aren’t morning people, either. I end up rushing out the door with the attendant in my dust and Rocket looking at me as puppyishly as is possible for such an eerily yellow-eyed creature.

Not everything is a “bed of roses;” I have frustrations, and good and bad days like everyone else. I have to live within the confines of the systems that support me and assist in carrying out my daily activities, ensuring my needs are met. Despite this I am ambitious and determined; I set goals and achieve them.

One of those goals is to see inclusion become a societal norm; this is one of the points of my job and my continuing education. I remember when inclusion was a new idea, so I know how important it is to asses each child individually, taking into account their varying degrees of ability. Not everyone will achieve the same level of functioning; the point of inclusion should not be to turn out grand classes of “Super Quads” but to ensure that everyone gets the same chance to reach their full potential in life, and enjoy it like everyone else.

Inclusion has allowed me to be an active member of my community; but inclusion cannot change everything. I still have a disability, and no matter how successfully inclusion deals with barriers, there will always be people who only notice my differences. But after I’ve been tucked into bed at the end of the day, what matters most is whether or not I’m happy with who I am, and what I’ve achieved, disability and all.

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