Thursday, July 25, 2019

Simulation Incomplete


When you label me,
You negate me,
Your simulation incomplete.

So, clearly,
Please hear me,
As I tell you what I need. 

To know I am enough. 

In this way, 
Living forward,
What it means to be
God's love.
--Chris Wylie

My friend, and co-conspirator who wrote the poem above, Chris of Crip (sometimes Kintsugi) Pastor remarked a few days ago while writing about a particular event that he is not trying to join in some "oppression Olympics," what with so much of nation in an attack mode lately, but to share experience. It is true that even allies don't often fully understand, but almost everyone can be in solidarity from common roots--as I once said about another group at seminary, we all have an interest in being judged for who we are, not by appearance.

As I read that, my thoughts turned to conversations about disability simulations. In a simulation, limbs are tied to splints, blindfolds worn, or similar measures. The intent is to give a feeling for what it's like to live with a disability. The idea of giving a feeling is true enough--I once had a class of interior designers try to simply enter a room and reach the wall switch while in a wheelchair. It was an enlightening time. 

But it wasn't complete--it lasted an hour. An hour is not a lifetime (or the time of a life since an injury). After a quite troubled week of access problems, I list some real-life things that a disability simulation will probably never convey:
  • making a hotel reservation well in advance, confirming it by phone, and arriving to find that the accessible room isn't available after all
  • asking extensively several times at a theatre about wheelchair seating, only to find that you've been given inaccurate information, and have to sit by yourself in isolation
  • being told that a place is accessible, only to find a step or two when you arrive, and then being told, "well, it's only a small step"
  • the exhaustion of taking a 20-minute paratransit trip that picks you up an hour late, takes two hours while the driver crams in a last-minute addition (which takes you past your house twice) and ends up taking more than 2 hours, so you miss dinner and part of your meeting
  • the time that evaporates as you call ahead, plan ahead, and hope (as noted, sometimes to no avail) for an event
  • entering a restaurant in winter, looking forward to eating with friends in a warm atmosphere, you see that there are a lot of open tables, but you are taken to a cramped booth (with fixed seats) next to the take-out door
  • being on the upper floor of a hotel when the fire alarm sounds and the elevators shut down
  • being on the upper floor of a hotel when the power goes out
  • giving your wheelchair to an attendant on an airplane, not knowing if you will ever see it again, if it will get shuffled to the wrong place, or if it will be damaged 
    in case of fire, use stairs -- person in a wheelchair on stairs
  • the look of surprise when someone realizes that, despite some problem here or there, you are an intelligent, functional human being worthy of respect
  • and finally, the feeling of being alone when you are too exhausted to go out, or left out because of access or transportation problems, or someone hasn't caught on to the previous item yet.
--Tim Vermande
-- illustration by G. Lake Dylan