I went into a place where they had a man with a disability, both intellectual and physical, who was a ticket taker. When I came in, he spotted me and smiled, I couldn't get my chair around an entrance barrier so he came over and undid a clip that would let me in another way. I thanked him, gave him my ticket, which he ripped, gave back, and said, smiling hugely, 'you're welcome.'
On our way out he spotted us heading to the exit door. He took a quick look around and saw that at that moment he wasn't needed. I also noticed that the other staff in the area were all laughing and joking and he was seated quietly on the chair set up for him to sit on while taking tickets.
He came over and asked how I had enjoyed myself, keeping his eye on the door at all time, this guy took his job seriously. I told him that I had and he said that he was really glad. On his way back I said, "It's hard being the only one sometimes isn't it?" His eyes filled with tears and he nodded.
I understand that. I am often the only disabled person in a place. I feel, sometimes, so isolated and so alone that it takes my breath away. Seeing another disabled person, not even speaking to them, just seeing them, is a big deal. That alone reduces my sense of being alone.
I am glad he was there. I just hope that those who support him understand that the work isn't done. He's alone. Really alone. Yes, it's a job. Yes, that's wonderful. But he didn't have a job like others in the same place the others that were laughing and talking and making work a social experience. He sat on the edge of exclusion while a number in a column somewhere would count him included ... inclusion at work.
One is the loneliest number that there can ever be.
I doesn't have to be.
But it often is. And all it means is that the first step has been taken, and many more are yet to follow.
Oh, your words are eloquent. Yes, it's a long long path..and stopping after the first step betrays the lack of effort to continue onward.
ReplyDeleteThat third rung of Maslow's hierarchy is a bitch . . . and I struggle with why. It doesn't have to be - but it is. The older I get - the more I wrestle with the reasons I see and how to address them. In the end - I think empathy and effective concern are a practice and subject that could be taught just like any other skill (welding, carpentry, needlepoint, etc.) but for some reason, it's largely not - or it's limited to our 'empirical selves'.
ReplyDeleteSadie and Ruby are getting practice in their world - largely because of you. Other kids - maybe not so much. I think that's going to be the answer though. I hate the term, but 'mainstreaming' is not about one kid - it's about all those kids learning to "be" with that one kid and making them part of their empirical selves.
Employers often don't see how valuable disabled employees are. They are not a charity, but often incredibly dedicated workers who take even simple jobs very seriously, knowing that jobs are hard to get when you are disabled.
ReplyDeleteOther jobs, such as mine (writer) can be challenging, too, because of rules about earnings. I didn't dare publish until I was actually retired, because the erratic nature of publishing earnings (you don't get $x/hour) means you can easily go over the disability limit on earnings for a month - with no control over it. I could never get the American Social Security system to find me a way around that (I wasn't ready to publish, as I'm very slow, but younger writers could have a real problem).
And yes, it is lonely. I always feel on the edge of things, even when I have the energy to go out.
@Alicia - you aren't kidding! I ended up going full-time at my job and going off of disability entirely (it would be so much better for me to work part time) but even at an $$ an hour job, we had a month with three paychecks a few months after I started. Therefore, suddenly, I was making too much per month and I had three months before they cut me off completely. Even though I was being paid biweekly...the same way the GOVERNMENT PAYS PEOPLE. You'd think they'd know that can happen, but it certainly didn't matter!
ReplyDeleteFortunately I can do this particular job full-time. But I shouldn't have had to because of the timing of a pay period!
I telecommute for both my jobs - I have 2 full time jobs - and only emerge from my apartment on weekends so I do feel kind of disconnected from society a lot of the time. Imagine if there was no internet...but if that were the case, I would not be telecommuting.
ReplyDeleteI work as an inclusion facilitator and I'm a parent. My eldest is disabled.
ReplyDeleteThis loneliness is what stops so many parents and supporters from taking a leap of faith and pursuing inclusion in school, in employment, in recreation, and in daily life.
It is often a long slow step from integration to full inclusion but we must be be brace and bold and determined. We must find ways to balance because existing in "special" spaces perpetually safe-guarded by well-meaning workers has its own 'special' horrors .