One of the drawbacks in a family with a special needs child is that the parents rarely if ever get do something together. “Together, as a couple” is a construct that rarely crosses our mind. Typically, one goes out and attends while the other stays and attends to.
We experience this again last night with an event at the local high school. We had no helpers for Bethany so we decided to take her with to a dinner and accompanying awards ceremony. It’s a big gamble taking her out like this – last time we did, she ended up sending a fork over about three tables from ours, totally surprising the customers at table 14. As patrons, they were gracious likely because we quickly hid and they had no idea our daughter had launched it.
The trouble with events like this at the local high school is not the concern for table manners but rather, the concern for access and acceptance. High schools are designed through a complex process of time, budget, politics and low-bid architecture. Accommodating mainstream is the goal; reasonably accommodating handicap is merely the law. Law, politics, and finance rarely cooperate and the resultant build-out is usually a bizarre affair that seems to have made everyone happy with themselves but has actually satisfied few. Simply getting into the building is difficult enough and if you try using logic – you’re totally screwed. Handicap parking is on the wrong side of the building. The curb cuts are 200 yards away from the door and are on the other side of the locked driveway gate. I guess the idea was that you could reasonably gain access by walking a quarter mile out of the way. That way, the cars of others wouldn’t have to drive so far to get closer to the door?
As for acceptance, that’s even more awkward – not so much in that we feel like we don’t belong, but rather the people around us are simply, naturally, keeping a social distance and I don’t think they even realize it. We can’t engage in witty conversation because, Bethany is beating her face: “hi Jim, great to see you!” (kra-whack!) “How’s your mom doing these days?” (biff! followed by a blood-curdling scream). “Us?, we’re doing great – Sherry, she’s drooling, can you get that?” The whole time the conversation is going on you’ve not once had eye contact – their eyes are glued to the little distancing spectacle in front of them.
We can’t dress in the popular garb of the day, either. As for ladies, those frilly little skirts and low cut, summertime blouses that are so popular – they’ll look really funny down around your muffin-top, pending on how far Bethany managed to pull them down in the split second you tried to stuff potato salad in your mouth. Even seated, grace and poise at a cafeteria table that has no place for a wheelchair is unlikely to happen. You’re busy competing with garbage cans and access routes in the aisle, fixed-in-place seats at the table and your own plastic fork on slippery paper plates. You can barely manage yourself let alone her. So in typical fashion, you shovel in what you can and simply dump the rest.
Getting into the place was nightmare enough – that bizarre combination of reasonable accommodation and public works - again, makes you wonder if the one being reasonably accommodated was in reality, the contractor.
The fun of all this comes later, during the actual awards ceremony – once you’ve managed to get into the auditorium (of course the access without stairs is locked) and are comfortable with the fact that you’re taking a whole row of seats and blocking the aisle (again, reasonable accommodation), you sit back to listen. The crowd goes quiet and the presenter begins. In the still of the auditorium, she suddenly realizes the power of “echo”. First it’s a little word, then a giggle, then a loud utterance…. and a then a full laugh. You try to quiet her, and that’s all she needed – affirmation that she’s doing something she shouldn’t…game on!
I love it really. They talk, she screams and laughs…its all a delight. You’re seeing the beauty of life in the middle of a social process and its absolutely wonderful. Right there in the middle of despair you’re suddenly liberated. You can see what matters and what doesn’t, you can see what’s foolish and what’s wise. You’ve become the fool for a reason that’s worthy of the effort and oddly enough, she beckons others to join in, few however hear the call. Again, Bethany teaches us to expect nothing and to experience everything.