The needs of people with profound and complex disabilities are often neglected. This new module changes that:
Built in collaboration with leading experts it uses personal experiences, storytelling and practical and straightforward advice to bring a special focus to people’s needs so that your staff can directly impact the quality of their lives.
Learn more about all of our modules here.
The hockey arena is cavernous and cold. The fluorescent lights are harsh, and it smells like chlorine and Zamboni fluid. We, five men with intellectual disabilities and their support worker, are there to get our first doses of the Covid vaccine. The line is long, but we are patient. We have gotten very good at waiting. This is the first time the men I support have been in a public space, the first time they’ve been face to face with a person they don’t live with, in a year. We wait in line for forty-five minutes. But we have been waiting so much longer than that.
First, we waited in fear, every cough and runny nose a potential harbinger of an outbreak. Then, after the months began to past, we waited in boredom. Then, resignation: This is just how we live now. Then with the Spring came the vaccine, and resignation turned to the restlessness of hope. This vaccine has given us something concrete to wait for.
Finally, the moment comes. The last consent form is signed, and we are lead out to center ice, where a dozen kind but weary nurses await us. We roll up their sleeves, and the needles go in. We are directed to the chairs towards at the far end of the rink where we sit and wait some more: Fifteen minutes more to be exact, to be observed for reactions.
As we sit and wait, I look around at the men I’ve waited through the year with. There was so much fear, a year ago, so much doubt: Would they be able to follow protocol? Would they be able to abide the disruption to their carefully crafted routines? Would they be able to share their limited space with one another?
But I needn’t have worried. They have been heroes, each of them. They have risen to every challenge that has faced them with grace and courage and an overwhelming empathy for one another. Whenever the restrictions have seemed too much to bear, all I’ve had to do is remind them that they are doing it to keep each other safe, and all their objections have fallen away. If the rest of the world had shown the same compassion towards its neighbor, the same selfless endurance for the sake of its community, the story of this year would have been very different.
Our fifteen minutes are up, and we are directed to a tunnel at the back of the arena that leads to the exit. It is dark in the tunnel after the glare fluorescent lights, and we fumble in the dark for the fire door. I find it, push it open, and we are out, into the sunlight and the springtime. The air is warm, the sun is blinding. For a few moments we can’t see where we are going.
And this is where we are, the men I support and I, and the agency that supports us, and the ministry that supports them. We are coming out of the tunnel after a long darkness, and the world outside is not the one we left behind. The old rules no longer apply. The policies and protocols will have to be rewritten. We cannot go back to the way things were. We cannot stay where we are. We are in a new world, and we must make a new life in it.
I do not know the way forward from here. It’s too bright to see, and I must wait for my eyes to adjust. But as I look around me, at the men who have taught me how to endure the isolation, privation, and loneliness of this past year, at the men who have taught me the meaning of courage and self-sacrifice, I know who we must look to for guidance, and the way forward, if only we will ask them. If only we will listen.
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 intellectual disabilities since 2007.
Providing end-of-life care is a privilege that is hard to choose. It is to choose to go down into the dark with another person, down into the deepest mysteries of the human experience. It is to share in the most difficult journey of a person’s life, a journey from which only one of you will return.
A palliative diagnosis can mean that the person is sent from their home and everything they knew, to finish their journey among strangers. Sometimes this is a relief to those left behind. It is hard to watch someone die, and it is not part of the job description. It is far too mysterious, too intimate, too life-changing, too precious. It is a hard thing to choose.
But for those who can choose it, for those willing to learn how to apply the fentanyl patches and manage the morphine drips, to move a person hourly to prevent bed sores, to change their catheter bags. This is no added burden to an already heavy load, but an honor they wouldn’t miss. They see it as finishing well, a privilege they won’t share with a stranger. It brings much-needed closure to a relationship of support in some cases decades-long. It is their final act of love.
The decision to take on this last and most difficult work is not a selfless act. Those that have done it know that there are gifts to be received here that no one else can give, and lessons that must be learned that can be learned nowhere else.
At the end of life, the balance of power between the support person and the supported shifts. The people we support finally find the equality they’ve always deserved but have so rarely achieved, and more than equality. The person we support at the end of their life are learning a thing, doing a thing, that we do not know how to do, but some day must. We find ourselves the ones supported. We sit quietly by the hospital bed. We listen and we learn perhaps the most important thing a human has to learn: how to die well.
At the end of their lives, all of those careful systems that have been crafted to teach and support and control those in our care collapse. We are no longer concerned with behavioral support plans or age-appropriate activities or annual planning meetings. The person is finally, truly, at the centre. Their wishes and needs can no longer be paraphrased and ignored. Here at the end we learn what support really is, and we find that we are able to provide it, one human being to another.
This is where all our work comes to its final fruition. This is where all the labels drop away, and we meet one another simply as humans, sharing the joy and grief, the gratitude and regret that is the common lot of mortals at their common end.
Learn more about this and all of our modules here.
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