Barb Goode, our local plain language expert, says that the point of plain language is not to always use small easy words, but also to expect to learn bigger words by having them explained. Equanimity is a big word. Here is what the dictionary says about it:
- e·qua·nim·i·ty: mental calmness, composure, and evenness of temper, especially in a difficult situation.
Equanimity is a hallmark of our supports to folks with disabilities and people who are marginalised. Sometimes people in our field say, “Everyone assumes I am patient, but I’m not.” I know the feeling – I was once in a hot tub with some folks and this guy leaned over to say, “You have the patience of Job!” In fact, I was having a great time. Relaxing in a hot tub was not a thing I’d done much of and they were supporting me to learn how to be still and enjoy it as much as I was supporting them. At the time, I was annoyed. I felt like he was making assumptions about the folks I was with – in fact, now I think I should have said “Thank you!” and seen it as a compliment. Because support staff (and parents) in our field are really incredibly patient – with folks they support, with systems they are part of, with community members… they’re amazing. And, many of us had never had the opportunity to learn how patient we could be, before the opportunities to spend time with folks with disabilities came about. I had no idea I had the patience of Job 🙂
Equanimity seems like a big expectation as well as a big word, when things seem hard and moving too fast.
Vulnerabilities is another big word. The dictionary defines it like this:
- vul·ner·a·bil·i·ty: the quality or state of being exposed to the possibility of being attacked or harmed, either physically or emotionally.
Within the idea of a Pandemic we are all vulnerable. It occurred to me to return to some of the work that was done around this locally, and which I don’t think is as well known as it should be, in which people with disabilities and those who cared about them came together in a Safeguards project that had some great results and products.
Jule Hopkin’s led The Safeguards Project at Community Living B.C., and her intention was to have a series of conversations with community members and experts and out of these create resources that would be helpful in planning for individuals and groups. She brought in people like Dr. Michael Kendrick, who knows more about how services and supports work around the world than pretty much anyone, and is also the author of “The Natural Authority of Families,” a classic in our field. Also, Kim Lyster, who has worked extensively in community development and systems change around British Columbia and was in the process of finishing her own Masters about “the beloved community.” Kim supported one of the first self-advocate driven and led community development projects when people were just moving out of institutions and into community. Jules also brought in Susan Stanfield, Shelly Nessman and myself and we brought in dozens of self advocates, some of whom were part of focus groups that Jule supported to lead her work.
A collection of wonderful resources are here on the CLBC site.
They are all free, professional quality, well written, edited and produced documents as good as anything you might buy. Those to deal with safeguards and planning for vulnerabilities are:
Given that we can’t go out to CLBC offices and ask for these right now, because of physical distancing so the virus won’t spread, these are all downloadable and people can print off their own copies. However, put it in your future plan to go ask for copy of the Understanding Vulnerabilities: A guide for self advocates one as it was designed with self advocates as a pocket-sized spiral bound booklet that they could carry with them to help them inspire conversations with folks who cared about them. Like all of this work, this booklet incorporated the ideas of dozens of self advocates who participated in groups and were part of the leadership for the project.
Jule’s concept was to seize the opportunity to be proactive about planning and best practices so that we could respond in good ways. These are documents that inform our thinking about all we do, all the time.
Even now, in what is for many a time of crisis as we try to figure out supports that work for everyone, we can make good plans to reduce vulnerabilities. If someone is going to be supported by people who are new to them, a really useful planning method is the One Page Profile. Some great examples that you can download and fill out with folks are on this site from the Sheffield City Council – there are different themes for everyone. Helen Sanderson and Associates suggests doing it for the whole team of people as well as the person receiving supports. I also really like just making posters about what we appreciate about people. This is from one of the CLBC booklets.
A good tool for folks who might be feeling isolated is the Circles Tool from Inclusion Press. Filling this out with people will give you and them a sense of who they want to stay in contact with by phone or on Facebook or in some other way that’s possible.
I like this tool because it reminds us we are not alone. In his book, Relational Being, Kenneth Gergen writes, “there is no isolated self or fully private experience. Rather, we exist in a world of co-constitution. We are always already emerging from relationship; we cannot step out of relationship; even in our most private moments we are never alone.”
It also reminds us that we have a choice in who we have and keep in our lives. In this time of enforced solitude we might want to reflect on relationships that no longer serve us, or things that we’ve done that we are no longer so dedicated to. And all around us there are people being kind in ways we haven’t seen before – perhaps we want to spend more time with them, in the future. Let’s add them to the circle’s intentions!
At the top of this post is an outline of a planning process called MAPS – a classic article by the late Marsha Forrest on how this is useful can be found here for free on the Inclusion Press site. She also discusses the importance of circles in this article. MAPS are sometimes called the emergency planning tool because they are shorter and incorporate the idea of “what would the nightmare be?” In the best of all possible worlds a whole team would gather together for person centred planning, and great things would be generated. This is an opportunity to use our same planning tools in far more intimate ways. Doing so, we realize how lucky we are to have so many things to draw on.
There has never been a better time for the folks we support and care about to get to tell their stories and have them recorded. Check out this article by David Pitonyak for some tips.
I find it is helping our family to think of things we’ll do once this is all over. People we’ll see, places we’ll go, things we’ll do. Equanimity is not least seizing the opportunities we have to reflect and learn from our experiences so that we can move from strength to strength. We will return to the Chicago Art Institute, we will see Greece again, we will travel to Connecticut to be with family we love… in the meantime, we’re baking cherry pies and have dusted off the breadmaker and are drawing pictures as part of an online group.