Having no real background in Judaism, I am particularly susceptible to opinions, views and attitudes. Such as the words of Leslie Bar, father of a close London friend, who once mused ‘…the chosen people. I wish they’d chosen someone else.’
Which brings us to ‘special needs.’ And wishing I was a bit less special myself. Yet, when having an especially special neuromuscular picture, well, there’s no getting around one’s specialty. Which is to be immobilized like a ship frozen in place in the Bering Sea. And simultaneously, the route to one’s heart opened as by a Russian icebreaker.
And speaking of ice…I attend an annual conference in the Upper Midwest, not far from the Canadian border, where much of the year the US Mail gets delivered by snowmobile. After 20 years in the same conference site on Lake Sturgeon, Minnesota, we are pulling up organizational stakes and heading even further north, to the Boundary Waters. Camp du Nord, despite the redundancy in the name, represents something new. Particularly, in the ‘special needs’ department.
One of the conference organizers asked me to look at the camp’s website, gauge its wheelchair accessibility. I had a go. Pictures, a map, all of the facts, none of the truth. I called the number for the Camp du Nord manager. Reassuringly, this brought me to an office a couple of hundred miles south, in Minneapolis. Good. It’s cold enough in the Twin Cities, no need to have someone stationed that far Nord. I talked to Jen.
Not to worry, that was her message. The new cabins, the ones in the Lake Pointe development, had all the ramps and wheelchair gear one could possibly need. What about distances, I asked. What did I mean? I explained. How far from the meeting area to the sleeping area, for example. Oh, about a mile. A long pause ensued. I tried not to sound irritated. Which is difficult for me, in these circumstances. Upon reflection, what is really irritating is my own propensity to please people, not want to make waves. Which when assessing wheelchair access, can be absolutely disastrous.
One mile, I said, is quite a distance. Well, are the paths paved? She laughed lightly. No, no, this is the north woods. Standard hiking trails. With tree roots, I muttered, not even asking a question. Oh, yes, she said. Roots and ruts. Ha, ha, I managed, from 1500 miles away. Jen agreed that the distance from cabin to conference hall was a bit of a schlep. She suggested I drive.
Now it was time to breathe deeply…and explain the lay of the quadriplegic land. I was journeying from California. I had no car. I did have a 100 kg wheelchair, powered by lead batteries…. Jen suggested that I hitch a ride to the meeting hall. Someone could put the wheelchair in their car. I was running out of patience. But I was running out of it too early. This is standard, this sort of dialogue. Jen ran a camp and conference facility, not a rehabilitation center. I knew this, but I didn’t care.
Thing is, we bring a lot of baggage into the disability experience. If you’re accustomed to not being taken seriously, regarded attentively, conversations of the sort I was having with Jen can be particularly galling. We were only going to make so much progress in our exchange. This had to be accepted. Still, one final explanation. My wheelchair required a special vehicle with a ramp or lift. Well, Jen observed, Camp du Nord did have a van…and it might take my chair. I tried not to laugh, be dismissive or anything but grateful. Thanks for the info, I said.
I stared at my computer screen for a long time. There it was, a camp beside the watery world of northern Minnesota. A place of extreme beauty, but no place for me. The conference was moving, but I was staying…in California. These things happened. People got left behind. Yes, I’d been going there for years, but not this year. One has to let go. I sent a brief email to the conference organizer, explaining that I checked out the new location, and thanks, but it looked like this would not work for me.
The response came in seconds. Yes, his email said, the new site was spread out, offered many pitfalls in terms of accessibility…and in a few months several past conference attendees would be driving north to the camp for an inspection. Everyone was concerned about making the place work for me. They were already thinking about renting a wheelchair-accessible van for the five days. Now, I responded with thank you and thank you, and meant every word.
Stuck in the emotional ice…rescued by the icebreaker of interdependent human beings who care. We were way beyond special needs and into special me. A category that has nothing to do with disability, but something else. Who knows what? But it was like donning ceremonial garb, something that goes with being a valued elder. Or just valued.