I'm having a bit of a buzz right now. I know that many of you know that I co-edit "Service, Support and Success: The Direct Support Worker Newsletter" with Angie Nethercott. We are really trying to get submissions for the monthly publications and have helped several people publish their first article. I've written several and Angie and I have co-authored some together. When Angie and I talk about topics, we tend look look at the issues that direct support workers are facing and then write articles which address those issues with ideas.
Well, I'm doing something very different right now. I had a woman with an intellectual disability come up to me at an abuse prevention training that I was doing. She told me that her staff had asked her to say Hi from them and to tell me they like the newsletter. I thanked her for the message, and told her, truthfully, that the message made me feel good.
"What's the newsletter about," she asked.
I explained that it was to help staff learn better ways of providing service to people with disabilities and better ways to take care of themselves too.
She looked at me gravely, then said, "You should write something to tell them not to say 'no' so much." She nodded to emphasize the point that what she was saying was important.
It took me a few days but when I had some time I began researching how 'no' is used in support giver, support recipient relationships. The first thing I got from that few minutes was that she was absolutely right. 'No' is said way, way, way, too often. And most of time, and I mean this in only this context, 'No doesn't mean no.' Most often 'no' means 'later'. But it has other meanings as well.
So, I'm buzzing because I'm now writing something at the request of someone who lives with service who knows what service she wants.
We've come a long way.
And with people with disabilities speaking up, like she did, maybe we'll get where we are wanting to go, faster.
16 comments:
Is anyone curious why this particular woman was asked to relay a message to Dave about a periodical about which she knew nothing? I find this alarming!
@Anonymous, yeah that bothered me, too.
Me too. I share the newsletter with my daughter. If she wants to read it, she does, if not, she doesn't. I love the fact that you are tackling a subject that she identified ... and maybe this might be a source for more topics!Or reviews!
Hmm, anon, I have to say that never crossed my mind, I think maybe because when I go to meetings downtown or with other groups I'm often given messages to 'Tell Kevin that I'm almost finished my section of the project' or 'Say Hi to Sandy, tell her not to worry, I'll be getting back to her in a day or two.' Message carrying to me is simply message carrying. I often don't know what it's about. I almost never ask. I just thought it was great that she was trusted to be capable to carry a message. But, maybe I'm way off the mark here because I focused so much on what she said then. This is why I love comments, I get other perspectives on my experiences.
If you listen to conversations around you, in most settings, there is a lot of negative language (and war imagery) that does influence us towards a world view of negativity and competition, instead of joy and belonging.
carrying the message seemed like a way of helping the person have a connection to Dave, a reason to speak when she might otherwise have stayed silent, a way to connect familiar parts of the woman's world to Dave and what happened at the conference - to create a sense of belonging, connection. from such little bits can come important events - such as the request for a topice, from a client's point of view.
When I started reading this post, I honestly thought the excitement was going to be about the woman writing an article for the newsletter herself. Is the newsletter made readily available to the individuals being served by these support workers? Is there an audio version for those who have difficulty with reading print? Are disabled individuals encouraged to submit articles for consideration? I am not a direct support worker and don't subscribe to the newsletter so I don't know much about it.
Anon Two, the newsletter is for people providing paid support but I know it is being shared widely with families and with self advocates (as evidenced by an earlier comment. We are about a year and a half old. We are really wanting to expand the author base. Now that we are fairly established we are actively looking for self advocates to write, or co-author, articles (meeting the same standards and using the same format) so that is coming. In my home agency, Vita, our self advocates have a dynamic newsletter where they are working at helping people learn to share their stories and writing in a newsletter format. It's hugely popular with both members and staff at Vita - and we are seeing real talent developing. So, I think we'll see a self advocate authored piece within the next several months.
When I was reading Dave's post, I was thinking, hmm, maybe they should do a survey of service consumers to ask for ideas of articles they should write for service providers. But upon reading the comments here (esp the last anonymous at 9:09 am this morning), it occurs to me that, yes, having service consumers actually write some articles themselves would be even better where feasible. Perhaps with a co-writer or ghost writer where that level of support is needed, but still using the person's own ideas, examples, style, etc. as much as possible.
Though a survey (perhaps a series of interviews) could help highlight issues that seem to be common concerns among many, so you don't get too caught up with the pet issues of a few at the expense of more common issues. (Though sometimes what seems like a "pet issue" for someone can turn out to be a shared challenge among many. And sometimes an issue becomes a "pet" issue exactly because it is so very important and strongly felt even if it only affects a few.)
Ah, looks like Dave and I wrote our last comments at about the same time, so he addressed my comment before my comment was posted :-)
Dave, with the permission of your authors, I would love to see articles from self-advocates guest-posted at your blog as well as having it published in the newsletter.
Dear Dave:
I also thought that the surprise might be that this woman would be writing an article about saying no. But I think that your article might be an important first step - there are many important perspectives. I am looking forward to reading the article.
Colleen
BTW
My husband and I have been married almost 49 years. We have two adult sons. One evening recently he said, "I wish we hadn't said no so much when the boys were growing up. I understand now that so often "no" meant that I needed a sense of power, I needed exert control, I was afraid or I was simply too lazy to talk to them about the issue so we could work out a yes."
We've talked about it several times since, and how *now* (in our late 60s and early 70s) we could be better parents to small children - if we only had the energy and health. LOL
The Chinese have a saying, "Better wisdom late than never," but it's a bittersweet lesson, even when the kids turn out fine. You know that you were parenting for *yourself* more than for them at times. I suspect that is very much the case with caregivers at all levels.
It’s an important point about people who use services as well as people who provide services writing for the newsletter or other resources. It’s also important to remember that such approaches privilege the viewpoints of those who can reflect on and write about issues. I work with many people who do not write about and reflect. They communicate their priorities and concerns in immediate ways in situu. I think it’s important that service providers do their part by writing about these things. I think it’s essential that we work together from comments to produce grounded work that reflects the concerns of those we work with. So I think it’s fab that there’s work going on around the theme this person raised.
I'm a bit torn about the "no". If someone is in care, they are there for a purpose. Often it is because they don't have good discretion. Often it is because the request does not fit in with the residence's health and safety. Other times it could be a staffing issue. Think of some of the possible questions - is yes applicable? I guess having worked with some people with disabilities - I have said no. I have been direct. I have answered the question honestly. I didn't patronize them - say "maybe", or "not now" hoping they would forget. I would say "no" if appropriate. This was my job. I can value their request and opinion - but at times "no" is the right answer.
Anonymous from May 9 at 2 am:
I think the issue isn't that service providers necessarily shouldn't ever say no at all. The issue is that some service providers may not be doing enough to exercise caution in how OFTEN they say no. It sounds like you try to think through your "no" before you use it. But I gather some people simply say "no" without stopping to think, "Am I saying 'no' for their benefit or for me? If I think it's for their benefit, is that really true or am I projecting my own worries onto them that might not really be applicable to them? Or might I be subconsciously and unintentionally trying to contrive reasons why this is for their benefit as a way to hide other motivations from myself? And even if it really IS to their benefit, do I still have a right to take away their ability to choose risk and potentially negative consequences if they genuinely feel the tradeoffs are worth it? Do I really NEED to say 'no', or might there be a way to negotiate a 'yes' that allows them to do some of what they want while still protecting their safety etc.?"
The older I get the more I realize what I don't know...And what in my lack of knowing I have done wrong...
Anon at 2am -Undoubtedly there are times any one of us needs to say "no" to someone else ...as humans, in life.
But I have to strongly disagree with the notion that this is somehow more accetable or needed in direct support work with people with I/DD. On the contrary it seems to me the bigger challenge is to keep from falling into the easier role of decision-maker or "parent" (to an adult), and instead step back and allow people who in many cases haven't had the opportunity to make choices to themselves be empowered to do just that, to stand with people who in many cases haven't been seen as valued or valuable and to see that this person has the same inherent rights, value, beauty as every other person.
Having worked in the field of providing support to people with disabilities for more than 15 years, I can think of many times that I have said "no," or some version of that (not now, we can't do that, etc...) BUT I canNOT think of any times I was right to do so. Aside from a handful of times that involved an immediate safety threat (walking in the street when a car is coming), I can't remember a time that "no" was my duty, or job, or anything but the wrong approach.
I think it has to go back to a question about philosophy, about what role we take on in people's lives, about what role people want us to take on in their lives. If someone comes in to my house to assist me, I would be terribly offended by his/her telling me "no"; and I would not maintain that person in providing assistance to me. How perfect that this young lady in Joe's class is so clear and so articulate about this part of what our role should be.
Just my perspective,
Purpletta
Hi Dave- sorry I somehow decided to call you Joe! Hmmm... At least I'm confusing you with another great person! Sorry for my error--
Purpletta
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