I was in an unusual situation last night while chatting with a small group of people I didn’t know.
One said she was doing an internship in a day program for adults with mental disabilities. This happened to be a program I had visited and had qualms about.
“What do you think of the program?” I said.
“It’s good. They do painting, and crafts, and games, and talk about the weather.”
The last one, about the weather, didn’t sit well with me, but I had no investment in this conversation and I just wanted to see how she would describe the program.
“But do you think it’s a good program for the participants?” I asked. What I meant was “is this a stimulating, life-enhancing program where the participants are learning skills and knowledge, developing interests and friends and being included in the community?”
“Well, the people who go there all have developmental delay,” she said.
Ugh.
I wasn’t sure how that had anything to do with the quality of the program. But more important, it told me nothing about the people as individuals. I thought about how the average person who didn’t love anyone with a developmental disability might interpret her response: “Oh. They’re different. Something’s wrong with them. Not much can be expected of them. They’re lucky to get anything.”
I wanted to scream about the individuality of each person, which couldn’t be conveyed in the term developmental delay.
The person then told me that the staff only helped the participants when they needed it, which I gathered she felt was an indicator that the program was good. Some were more independent than the others, she said.
“But it’s too bad that they’re separated as a group,” I said.
“It gives them something to do,” she said.
I hate that saying. We all need something to do.
“They go on field trips,” she added. But as a group, I thought.
It was a very odd conversation where I felt like I got a bird’s eye view into how a group of people are reduced to their disability.
There was nothing nasty about the person and I imagine she does her job well.
It just reminded me of how knowing a person as a person differs from knowing them as a label. And how hard it can be to get others to see past the label.
One said she was doing an internship in a day program for adults with mental disabilities. This happened to be a program I had visited and had qualms about.
“What do you think of the program?” I said.
“It’s good. They do painting, and crafts, and games, and talk about the weather.”
The last one, about the weather, didn’t sit well with me, but I had no investment in this conversation and I just wanted to see how she would describe the program.
“But do you think it’s a good program for the participants?” I asked. What I meant was “is this a stimulating, life-enhancing program where the participants are learning skills and knowledge, developing interests and friends and being included in the community?”
“Well, the people who go there all have developmental delay,” she said.
Ugh.
I wasn’t sure how that had anything to do with the quality of the program. But more important, it told me nothing about the people as individuals. I thought about how the average person who didn’t love anyone with a developmental disability might interpret her response: “Oh. They’re different. Something’s wrong with them. Not much can be expected of them. They’re lucky to get anything.”
I wanted to scream about the individuality of each person, which couldn’t be conveyed in the term developmental delay.
The person then told me that the staff only helped the participants when they needed it, which I gathered she felt was an indicator that the program was good. Some were more independent than the others, she said.
“But it’s too bad that they’re separated as a group,” I said.
“It gives them something to do,” she said.
I hate that saying. We all need something to do.
“They go on field trips,” she added. But as a group, I thought.
It was a very odd conversation where I felt like I got a bird’s eye view into how a group of people are reduced to their disability.
There was nothing nasty about the person and I imagine she does her job well.
It just reminded me of how knowing a person as a person differs from knowing them as a label. And how hard it can be to get others to see past the label.
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3 comments:
Yeah, everything about this conversation and the lack of real interest, the dull-mindedness of this person's assumptions – this is why I don't send my daughter to a day program, and why it's so hard for me to find
good help for her at home. Who knows if there's some kind of training that would actually be effective (revelatory, that is to say) for such employees, or what level of complexity they are willing or capable of engaging with. Alas, I think the motivation simply isn't there. Sorry if
this sounds harsh, but I've been actively side-stepping such energies for
three decades, and boy am I tired of that particular dance.
Hi Louise,
This is true, programs aren't always doing all the things you said they should be. It only takes one person to really push this in any program, parent, advocate, friends or siblings.
I have walked into day programs and really made change for clients, watching them benefit and then having to engage staff, because I am not meant to be there forever. This the hard part, engaging staff. They sometimes get stalled and stuck into a boring mundane routine. And unless a client is jumping up and saying "I want to play outside" staff miss the yearning for this. I have gotten staff to the level that this lady you were talking to mentions. Helps them if they need it, takes them on field trips and so on. This is the only reason I can give them a little credit "at least they are doing the best they can." Sad, but realistic and positive as not everywhere is doing these things.
Not every day program is going to look the same, nor should it, some clients like it, even if their parents don't, not every client should be in a day program because it worked out for another person and everything we want is not always what the individual wants and there needs to be compromise.
You have seen me work and I am always the gentle push my clients need to get to where they'd like to be. I have also learned not to get upset about the program, you have to teach the staff person. For example, if she said to me "they all have developmental delay" I may have said "yes, and it is important to be read to to learn literacy skills" or "that doesn't mean they haven't or can't learn daily skills like making a sandwich." People need to be challenged, especially in my field and constantly.
In my field, people either know me because they like me or they don't, I will still continue to challenge people like this lady on their ideals of others. I know the people I support appreciate it as it opens people up to getting to know them more.
I have a question, do we, non-disabled folk, get to wake up, realize our full potential as human beings and engage fulfillingly in our communities?
In my life, I wake up, do self-care, fulfill responsibilities, go to work where I feel some stress, some monotony and some fulfillment and have several mundane interactions and several positive interactions. I'm in a homogeneous group as an employee.
I have definitely seen some lame day programs but, having a place to go , familiar faces and half-stimulating activities are not only for individuals with disabilities :)
Always pushing for better is the way to keep fresh in this world, but I think when planning life for people with disabilities, we shouldn't forget the realities of being a human in this society.
In my years in the field, I've come to believe that group activities offer a more fulfilling day than individuals being isolated with caregivers so they can "reach their full potential" which is a nice notion, just not something most of us do daily.
And yes, better if the day program is a stimulating one :)
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