Disability

Person in wheelchairI often think back on my time working with people with disabilities. For more than two years I was a “community supporter” for three adults sharing a home. Two of the adults had cerebral palsy, and one had Down’s syndrome.

On weekends I would spend 20 hours straight with these people. A few times I spent 48 hours straight with them. I’d get there, help them make dinner, and eat dinner with them. I’d do household chores with them, help them with their personal hygiene, and take them for outings.

I’d do my best to help them achieve their “goals.” Each one had specific goals written down on paper, like folding the laundry, cutting vegetables for meals, or meeting new people. At the end of the day I had to write down the ways that they achieved their goals. I think that helped the agency sponsoring these adults get government funding.

I still remember one of my first afternoons working at the home. I had come into work feeling pretty down. I think I was upset about a long distance relationship I was in. But as I was sitting on the porch with one of the women with cerebral palsy, I realized I didn’t have it so bad.

Here I was, with no health problems, upset about my life. And there she was, bound to a wheelchair with no hand use, exuding positivity. I remember she kept laughing as she babbled about her favorite doctor, and all the nice things the doctor had told her that morning. After spending an hour or so with this woman I realized that I was no longer sad. In fact, I was feeling very lucky and content.

That is one of the greatest lessons I’ve learned, and I try my best not to forget it.

I also learned to accept uncomfortable situations I can’t control. I would bring the woman I just mentioned to church every Saturday evening because that was something she wanted to do. Because it was an evening service with relatively few attendees, it was held in a small room in the church’s basement.

The service involved lots of audience singing, and many of the songs were pretty emotion-inducing. They involved lyrics about love, patience and generosity. Well pretty much without fail, each time love was mentioned this woman started to choke up. I’d look over and her mouth would be open but no sounds would be coming out.

About five seconds later she would begin wailing. And I mean wailing. I’m pretty sure people outside of the church could have heard her. The wailing would last for the duration of the song. Tears would be streaming down her face. If you didn’t know better you’d think she hated the song. But she didn’t. She loved it. What she hated was all of the crap (sorry, can’t think of a better word) she had to deal with in her life.

That included rude people, a lack of family, and a lack of stable relationships. Because taking care of people with disabilities is a difficult job that’s not financially rewarding, the field has a huge turnover. So she was constantly getting attached to people, only to find out they were soon leaving for another job. She wanted these people to be her family, but unlike family these relationships were only temporary.

I think her cries reflected a yearning to be loved, and a sadness that she hadn’t always been. And I also think the cries were therapeutic.

Anyway, I was in the difficult situation of being responsible for the woman disrupting the music. What was I supposed to do? Wheel her out of the room and keep her from enjoying the beautiful sounds? Or keep everyone else in the room from fully enjoying the music?

Usually I opted to keep her in the room. I knew her cries would eventually subside, and I think the others were pretty tolerant of her emotion. One especially nice lady would always approach her after church to make sure she was OK. She would hold her hand and express a genuine interest in her well-being, which meant a lot.

There were other times when I was in public with these adults with disabilities that I felt uncomfortable. It wasn’t so much the actions the adults took that made me uneasy, as my concern for how others would interpret their actions. Eventually, however, I learned to accept feeling uncomfortable. I realized there was nothing I could do about certain things, and that I had to be OK with that.

Photo credit: www.flickr.com/photos/lwr/3992098309

Disability

I often think back to my time working with people with disabilities. For more than two years I was a “community supporter” for three adults sharing a home. Two of the adults had cerebral palsy, and one had Down’s syndrome.

On weekends I would spend 20 hours straight with these people. A few times I spent 48 hours straight with them. I’d get there, help them make dinner, and eat dinner with them. I’d do household chores with them, help them with their personal hygiene, and take them for outings.

I’d to my best to help them achieve their “goals.” Each one had specific goals written down on paper, like folding the laundry, cutting vegetables for meals, or meeting new people. At the end of the day I had to write down the ways that they achieved their goals. I think that helped the agency sponsoring these adults get government funding.

I still remember one of my first afternoons working at the home. I had come into work feeling pretty down. I think I was upset about a long distance relationship I was in. But as I was sitting on the porch with one of the women with cerebral palsy, I realized I didn’t have it so bad.

Here I was, with no health problems, upset about my life. And there she was, bound to a wheelchair with no hand use, exuding positivity. I remember she kept laughing as she babbled about her favorite doctor, and all the nice things the doctor had told her that morning. After spending an hour or so with this woman I realized that I was no longer sad. In fact, I was feeling very lucky and content.

That is one of the greatest lessons I’ve learned, and I try my best not to forget it.

I also learned to accept uncomfortable situations I can’t control. I would bring the woman I just mentioned to church every Saturday evening because that was something she wanted to do. Because it was an evening service with relatively few attendees, it was held in a small room in the church’s basement.

The service involved lots of audience singing, and many of the songs were pretty emotion-inducing. They involved lyrics about love, patience and generosity. Well pretty much without fail, each time love was mentioned this woman started to choke up. I’d look over and her mouth would be open but no sounds would be coming out.

About five seconds later she would begin wailing. And I mean wailing. I’m pretty sure people outside of the church could have heard her. The wailing would last for the duration of the song. Tears would be streaming down her face. If you didn’t know better you’d think she hated the song. But she didn’t. She loved it. What she hated was all of the crap (sorry, can’t think of a better word) she had to deal with in her life.

That included rude people, a lack of family, and a lack of stable relationships. Because taking care of people with disabilities is a difficult job that’s not financially rewarding, the field has a huge turnover. So she was constantly getting attached to people, only to find out they were soon leaving for another job. She wanted these people to be her family, but unlike family these relationships were only temporary.

I think her cries reflected a yearning to be loved, and a sadness that she hadn’t always been. And I also think the cries were therapeutic.

Anyway, I was in the difficult situation of being responsible for the woman who was disrupting the music. What was I supposed to do? Wheel her out of the room and keep her from enjoying the beautiful sounds? Or keep everyone else in the room from fully enjoying the music?

Usually I opted to keep her in the room. I knew her cries would eventually subside, and I think the others were tolerant of her emotion. One especially nice lady would always approach her after church to make sure she was OK. She would hold her hand and express a genuine interest in her wellbeing.

There were other times when I was in public with these adults with disabilities that I felt uncomfortable. It wasn’t so much the actions the adults took that made me uneasy, as my concern about how others would interpret their actions. Eventually, however, I learned to accept feeling uncomfortable. I realized there was nothing I could do about certain things, and that I had to be OK with that.

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