“The room was full of people with disabilities, almost all adults, and their parents. I’d seen it before a dozen times, but this time it was impossible for me not to compare the assembly with the people on the Endeavour. One of Ned’s fellow campers this year, a man in his thirties who wears a red crash helmet to protect his head during seizures, spent the entire check-in period curled up in a fetal position on the floor. A young woman in a wheelchair drooled continually onto a soaking wet sweatshirt, looking around desperately for …what? The first person I saw in the room was a black man about Ned’s age, continually moaning while a grandfather-type tried to feed him some brownish gray substance which could only be called gruel. It seemed like half of Ned’s fellow campers this year are nonverbal and only vaguely aware of their surroundings.
These are the people Ned is expected to spend the rest of his life with: not the people on the boat….The difference between this group and those other groups was so painfully obvious to me, and so depressing, that I couldn’t help thinking Ned noticed as well. I half expected him to run back out the door shouting, “Been here, done this, never going to do this again.” He didn’t try to escape, but he was certainly upset about something….
I’m not proud of having this reaction to a room full of people with disabilities, but I can’t help it…And the thing that bothers me the most is something I’ve noticed over the years, and I’ve just had eleven days at seat to prove it again. His own intellectual and even physical abilities rise or fall depending on the crowd around him.
I think Ned knows now that there’s another life out there. Whether he realizes that life may be unavailable to him most of the time, I don’t know.” pp 69-71
This section is a very honest look at the difference between inclusion and segregation. How did you feel as you read the descriptions given by Palmer? Have you ever had a similar experience? Does your loved one spend time in a secluded environment? What advice would you give Palmer if you could?
Leave a Reply