“I used to think that my voice was equally important, if not more so, than the people I supported. In this story I saw this man advocate for himself, speak for himself, and voice his own dreams. It was at this point I understood that I was his ally not his advocate and that only he could advocate for himself. Our job then is to support advocacy, even teach advocacy, but once those are done our primary job is to shut up.” – Dave Hingsburger
This video is an excerpt from the Open Future Learning Mini Module ‘Helping People be in Control.’ Taking 30 minutes to complete, this Mini Learning Module captures everything you expect from Open Future and delivers it in a bite size format.
Our members use this module so their staff know how to help people to:
Make good decisions.
Stay in control while remaining safe.
Use self-advocacy as a powerful way of taking control of their lives.
First month free:
Email hello@openfuturelearning.org to schedule a demo of the Open Future resource and then receive your first month free – no contract of use.
We know that supporting people with developmental disabilities can bring joy and meaning. But our work also often results in stress, burnout, and high levels of turnover. And that’s before the onslaught of COVID-19, the novel coronavirus.
Enjoy this message of encouragement from Peter Leidy:
Here are some thoughts on what we can do to take care of ourselves and others during this unexpected, uncertain, and challenging time.
You, and people who count on you, need you to take care of yourself as best as possible, when you are on as well as off of work. In a minute, we’ll get to a few ways you can do this – and engage others around you in your “self-care” during these difficult times.
But first, consider this. There’s a reason airline passengers are instructed that if the oxygen masks drop, adjust your own mask before assisting others. It’s not to be selfish; you can’t be your best for someone else if you’re not okay yourself.
In this film David Pitonyak asks, “Are you someone who helps people to get to dry ground or are you destined to push them further under water?”
This bears repeating, but I’ll phrase it differently. You can’t truly support another person well if your own needs are not being met. A key question here is: How are your needs being met?
In my experience, both personally and professionally, a person’s needs are met not just by what the person does for their own care, but also how others contribute to that person’s wellbeing. I do what I can to take care of myself, but I am also blessed with others in my life who help meet my needs. We take care of me.
People in support roles often feel isolated, on our own. If I don’t do this, no one will. This is totally on my shoulders, at least until the end of my shift. We need to support each other: ask what we can do to help out, check in, be present, be responsive. Family members, managers, support workers, teammates: We all act together for good support.
Okay, now back to some ways you can take care of yourself – not just for your own physical and emotional health, but for the sake of those you are supporting. Here are some ideas which may bring light to your support relationship, to you when you are alone – or both:
exercising
noticing beauty in nature
mindful breathing, even for a few minutes, focusing on the inhale and exhale
yoga and/or meditation (lots on YouTube and Zoom these days)
calling someone who’s currently socially isolated
offering to help a neighbor
taking a 15-minute walk in the morning (or any time)
writing positive messages with sidewalk chalk
offering something you have that others may need
… just to name a few.
When I’m with groups in workshops or training sessions (which I’m taking a break from now, except virtually!) I might ask people to bring to mind something or someone they’re grateful for.
How about trying this right now? Go on, I’ll wait for you. Honestly I’m not going anywhere! What is something or someone you are grateful for?
Often, it turns out to be a person. If it was for you, I ask that you tell that person – now! Call or text and let them know THEY popped to mind as someone you are grateful for. Why? Because being mindful of our gratitude improves our own wellbeing, and sharing it improves the other person’s.
If you didn’t try that right now, have a go later or when you are next with someone you support. Who or what are you thankful to have in your life?
University of Wisconsin epidemiologist Malia Jones offers some important insights on our current global crisis (interview, Capital Times, 3/18/20.) She says, “Public health by nature is a community project.” We have to cooperate, listen to each other, help each other, ask for help from others. Sound familiar? This is our work.
Good hygiene, safe practices, protecting vulnerable people: doing what we can to stop the spread of the COVID-19 virus. All of this is so important.
But let’s not ignore what else is needed as much now as ever: Listening, self-care, practicing gratitude, cooperation, helping each other, and seeing this crisis as an opportunity to build community.
By Peter Leidy
What is everywhere you went Peter Leidy went with you?
Email hello@openfuturelearning.org to schedule a demo of the Open Future resource and then receive your first month free – no contract of use.
A disability support worker shared these words with me and it is one of the most beautiful, insightful and compelling pieces I have ever read.
Ben
Founder | Open Future Learning
Each morning since the pandemic began, I leave my home and drive down the empty highway to the location where I work. I enter the home, sanitize my hands, and greet the five men who live there. Each morning, their expressions and vocalizations are a little more anxious and a little more intense than when I left them previous afternoon. Each morning, I answer their questions: Can we go out today? No, I’m sorry, we can’t. When can we go out again? We just have to take it one day at a time. Why can’t we? Because we could get sick. Is it just us? No. It’s the entire human race. Each morning they respond with a little more resignation, and a little more despair. We settle in for another day of shelter-in-place.
We follow the rules and stay home. We forgo our regular routines and entertainment. The bowling trips, the painting classes, and karaoke at the day program are cancelled. Dwain, whose mental health is closely linked to a stable schedule and his twice-daily bus rides to the local Wal-Mart, is finding the days particularly difficult. When it feels like the walls are beginning to close in, we pile into the van for long drives through the silent countryside of early spring. Gas is cheap. Until this week, we risked the Tim Horton’s drive-through and cradle gently our totemic double-doubles, sipping this rare elixir of normalcy. Together, we watch the live news broadcasts, Trudeau on his porch.
At first I was reluctant to have the news on, worried it might prompt anxiety – for all of us. But when I’d ask what they wanted to watch, their answer was always “the news”. They appreciate keeping up with the latest updates. While it might seem kinder to keep people “in the dark,” respecting choice and self-determination is all the more crucial in times when our options seem so limited. This is their home, not mine. They are adults, so it does not make sense to simply follow the protocols I keep with my children. Similarly, dignity demands that considerate honesty must come before my own desire for a sheltered and calm working environment. We are, after all, truly all in this together.
As we hear announcers share the rising numbers, we try not to think about what an outbreak would mean in this small split-level residence, home to five men of advancing age and already-compromised immunity. We wash our hands again. We stay home some more. We stop risking the drive-through, make our coffee at home, drink it together while we watch the news.
I am afraid. I am afraid for them, but also for me, and for my family. But they are not. In many ways, COVID-19 has not disrupted their lives to the extent it has mine. They are now old men, tough and wise, who came of age in the crucible of the institutions. They have known hardship I can’t imagine. They have friends in the unmarked grave behind Huronia, and do not fear death as I do. They have lost more than I can understand and have lived through much grief – along with joy and celebration. Though not of their own choosing, social isolation is often not a new experience for people with intellectual and developmental disabilities. These men, despite their depths of hard-won wisdom and delightful companionship, are well-accustomed to strangers keeping their distance in public places. The conditions we ironically bemoan on social media are barely distinguishable from how they have spent most of the days of their lives. They are old pros at quarantine, and they are teaching me.
My shift ends. I gratefully wash my hands and guiltily break the quarantine, to drive through a numbed town that has lost its freedom. The parks are empty, and the bars and the movie theatres are closed. For the first time, the rest of are learning the taste of institutional living. It is our liberties that have been curtailed, our habits that are being judged, our behaviour that must conform now to programs designed by others. All homes are experiencing increased legislation, restricted freedoms, and pressure to act and behave in certain ways. Throughout history, these demands we now face have too-often been the experience of people with intellectual and developmental disabilities. I hope that I – that we – can bear these conditions with half the grace and humour that these men have for so many years. Now we do so to protect vulnerable people from the coronavirus. In the past, vulnerable people have often been asked to act and behave in certain ways only to protect the status quo.
Back at my own home, I find myself without so many of the social connections that add meaning and fulfillment to my life. I taste the marginalization that is part of the daily experience of so many people. We have so much to learn from one another. I am just now learning what many others have been training for their whole life: that when our work is taken from us, when our hands fall still, and when our distractions fail us, we are left with what matters most. We come face-to-face with ourselves, and those who are closest to us. So let’s be good to one another. Let’s be kind and patient. Let’s have grace for lack of social skills, for poorly chosen words, and for tempers lost. Let’s share the television remote and swear at missing puzzle pieces together. Let’s care for one another and be grateful that this isolation is not forever. It is an act of love for a broken world. And when these quarantines end and we once again find it easy to take our casual gatherings for granted, let’s remember Dwain and others for whom “social distancing” has too often been an unchosen reality of marginalization. Let’s stay home together. And when the time comes, let’s leave our homes together as well.
By Mike Bonikowsky
Mike Bonikowsky lives and works in Dufferin County, Ontario. He is a direct support professional with the local Association for Community Living and spends the rest of his time raising two young children. He has been living and working men and women with developmental disabilities since 2007.
