Charlie’s Community Clean-Up
When I started supporting Charlie a few years ago, I wanted to find something meaningful for him to participate in. The challenge is that Charlie does not speak, and so he couldn’t verbally tell me what was important to him. I spent some time just being with Charlie to try to get a sense of what interested him. I noticed that he strove to create a certain order in the environment around him, straightening out this object, moving that one. At food courts he went and rearranged the food trays above the garbage and recycling bins, and at the gym he picked up pieces of paper up off of the floor and threw them away.
I also knew that his parents were quite interested in him obtaining a volunteer role. I had previously read about the idea of Social Role Valorization, which basically says that people experiencing disabilities are often seen as occupying unvalued roles. Because of this I wanted to help Charlie find an opportunity to volunteer that would allow him to contribute to society in a valued way and so create a positive perception of him with members of the public.
In the past, I had observed people volunteering to clean up the side walk in front of local businesses, and I thought this could be something Charlie might be interested in, based on his interest in ordering his environment, and also because it was a role that would have to be out in the community and witnessed by members of that community. I also felt that it was extremely important for Charlie to volunteer in the community he lives, so that members of his own community would begin to recognize him in this role.
I decided to contact the director of the Dunbar Village Business Association and suggest the idea to her. We all met in person for coffee and the director agreed that this was something the business association was open to, and so they bought Charlie the necessary gear for the role. They also published a story in the Dunbar Village Business Association newsletter highlighting what Charlie was doing for his community. The newsletter is delivered to over 10,000 people.
Once he had all of the gear, the problem became one of storage. It was too much for Charlie to pull it back and forth from his house each time he volunteered and because we spend many hours together during the day, it was an inconvenience for him to pack it around for that time. We put out a notice looking for a local business to house the gear for us, and it didn’t take long for someone to step up. This not only allowed Charlie easy access to the cart when he needed it, but also allowed us to make a new community connection with a local business owner.
These days, Charlie and I do the clean-up together and he is regularly recognized by people in his community for what he is doing. They wave, smile and say thanks as they pass by, and he is becoming more and more recognized in his community.
A Quick Thought on Goals vs. Dreams
Goals are something that we have made clinical. We can take a statement of what we want, break it up into pieces, create an action plans for achievement, and then set out to accomplish it step by step. We can strive to make things documentable, predictable and controllable.
Dreams, on the other hand are mysterious. With a dream, you don’t need steps and plans. All you need is intention. If you can hold that vision in your mind, it will guide your actions and you will have no choice but to move towards it. Things will begin to fall into place, sometimes as if by magic.
How are we Describing People?
We may want to look critically at the language we are using to describe people who receive support services. During the media coverage of the crisis at CLBC, some less than flattering terms have been used. One of those terms, for example, is: “Mentally disabled clients”
The phrase “mentally disabled clients” focuses immediately on a deficiency, in this case a mental one. It is an introduction to a person based on what they are perceived to be not good at. This statement basically says that the defining feature of this individual is a “mental disability”.
Nowhere in the above description, is the word people used. It is important to remember that these are people first. This means that regardless of someone’s diagnosis and challenges, they are first described as being a person. Yet somehow, in this example, being a person has become less important than the label our society has given.
Instead, we could say something like, “a person who experiences/is classified as having/is labeled with a disability”. Still, even saying “a person with a disability” focuses on what an individual can’t do, as opposed to what they can do. I admit that it is hard to describe a group of people without a label, and if we said people with abilities, few of the public would know what we were talking about.
Still, I’m not sure who, given the option, would choose to be defined by what is wrong with them. I wouldn’t walk into a conversation and say “Hi, my names Chad. I can be neurotic and irritable at times. What’s wrong with you?
I think the only way to make up for this is to focus on the capabilities of individual people you meet. Then, instead of being a “mentally disabled client”, they become people with something to give, such as Sarah who has a great smile and uses it to brighten up a room, or Bill who volunteers his time to the community block watch.
Sure, people who receive services have challenges, sometimes very pervasive ones. Many people require some level of support for these challenges. I’m not suggesting that we downplay this, only that we start to put more focus on what’s great about people as well.
The language we use impacts the perception of the public. My question is: What kind of view do we want to create of people that are receiving support? As people who are deficient and need help? Or as people who have capabilities to give? What view would you want people to have of you?
A Quick Thought on Leadership
To be a leader, all you need to do is be yourself. Find out what you are really good at, and then find ways to share that with those around you. Your example will be leadership in itself.
Not everyone will follow; it depends on how many people are in need of what you are offering. Regardless, this leadership will be a unique piece of the puzzle for our world.
Steven’s Story
Three months ago I attended a course called Optimal Individual Service Design in Vernon, which was taught by Michael Kendrick and Janet Klees. One of the requirements of this course was that we would be paired up with a local individual who was receiving services and together we would create an optimal plan that would look to meet that individuals unique needs for a good life.
Rumor had it that there was one individual who was really interested in drinking beer and watching hockey, two things I am fond of myself. I silently hoped that I would be matched up with this person. Later I found out that I had been matched up with a man named Steven, and would you believe it, he was the one who liked hockey and beer. Fate had brought us together.
I spent a large amount of the next few weeks getting to know Steven and working with him and those close to him to create a plan. At the end of the course, my group and I presented our proposal for Steven to Michael, Janet, and the rest of the course participants. One point of feedback from Michael was that we didn’t dream big enough in our proposal of what would constitute a meaningful life for Steven.
Hearing this, I decided to throw out a question to the rest of the group: Steven loves hockey. What if he had the opportunity to fly down to Vancouver, meet up with me, and watch his favourite team in the whole world, the Vancouver Canucks, play a hockey game from great seats? People agreed that that would be really great, and that was the extent of the discussion.
During the break from the course I was approached by Gary and Henry, the directors of the two local community living organizations. Surprisingly, both mentioned being able to get Canucks tickets through their connections. We all agreed that Henry would look into getting Steven and I tickets through his connection.
Fast forward to a couple of weeks later and I hear from Steven’s mother, Joan, that Henry has come through with two tickets to a game on January 5th, and that she is looking into flights for her and Steven to come down to Vancouver. Amazingly, January the 5th is Steven’s birthday. A couple of weeks later the flights were finalized and there are plans in place for me to meet Steven and his mother at the Coast Vancouver Airport Hotel for dinner, before Steven and I go to the game.
After meeting them for dinner the night of the game, Steven and I headed downtown to GM Place. After parking at an overpriced lot, we walked over to the arena and tried to find a way inside. After walking around basically the whole building, we had still not found a wheelchair entrance (Steven had recently started using a wheelchair). We came asked an employee standing outside if he knew of a wheelchair entrance to the building. He asked me where my tickets were. I showed him and he suggested going through gate 16.
For some reason he decided to accompany us there. He asked about the tickets and I showed him where we were sitting. He replied that our tickets were not in a wheelchair zone. I got a sick feeling in my stomach. It would be very difficult for Steven to get to these seats. Here he had come all the way to Vancouver for the game, and the whole experience was in jeopardy. The employee who had been helping us must have read my thoughts, because he immediately contacted his supervisor to explain what was happening.
This is where things got interesting. While we were waiting for the supervisor to come and talk to us we got to telling him the story of how we got the tickets, finishing with the part about how coincidently the game happened to fall on Steven’s birthday. Once they found that out they were determined to get us a better set of seats. The way they rallied around Steven gave me a new sense of confidence that things may work out after all.
We sat there for awhile while three members of the Canucks host team got on their radios and looked for seats for us. After about fifteen minutes, we were asked to follow them down a corridor, through a door, and into the bottom of GM Place. We got to there area where the zambonis were parked just in time to see the referees go running past us and out onto the ice. It turns out they put us in some of the best seats in the whole place. We were at ice level, right behind the Canucks goalie, Roberto Luongo.
By some stroke of luck, the people who usually sit in two of the best seats in all of GM Place could not make it to the game on the night where Steven happened to be in town, which also happened to be his birthday. If that is the best damn coincidence ever, then I don’t know what is. Oh, and the game, the Canucks kicked butt. Pucks, sticks and bodies smashed the glass in front of us, and hats flew over our heads after Alex Burrows scored his third goal of the game, completing his hat trick. The Canucks ended up winning 7-3.
For Steven, it was a fitting experience. This couldn’t have happened to a better guy. Steven is an individual who is so friendly and accepting of everyone he meets, and his positive attitude is contagious. He welcomes new people into his life without hesitation. I know because I experienced it first hand. He is a great guy, who got a great birthday present, and I am so grateful that things came together for him to make this night a reality.
It’s incredible to me that such an occurrence always starts by making a dream public. Once others know, that intention can begin to grow, occasionally with brilliant results. I was fortunate just to be along for the ride.
I would like to thank everyone who made this experience possible for Steven: Michael Kendrick, Janet Klees, Henry from Kindale Society, Gary from North Okanagan Community Living, Joanne and Julie from Kindale, and Steven’s mother, Joan. Last, but certainly not least, the host staff of the Vancouver Canucks, who worked so hard to make sure Steven got to have this experience.
Brief Thoughts on Vulnerability
The word vulnerable comes from the Latin word vulnus, which means wound. Vulnerability is the ability to be wounded physically or emotionally.
People who experience a disability are often described as incredibly vulnerable. However, it doesn’t take the experience of a disability to make a person able to be hurt.
The ability to be hurt is part of being human, and we are all vulnerable, even incredibly so, in some way. Most likely we have all been hurt deeply at one time or another. We have all had painful experiences.
Maybe, by over supporting those who experience a disability, we forget about our own vulnerabilities for awhile. After all, being vulnerable is not highly valued in our society. Therefore, we focus it on those people who have traditionally been undervalued.
The Mustard Contradiction
As a society, why do we try to rid ourselves of something using that very thing we are trying to rid ourselves of?
With capitol punishment for example, what does killing someone for taking the life of another accomplish? Sure, it will stop the perpertrator from killing again, but what effect will it have on killing in general?
Obviously, as a society we just killed someone, so we didn’t stop killing, we actually kept it going, becoming the very thing we sought to eliminate.
The whole idea is confusing. You can’t end fighting by beating someone up. You can’t use a war to end a war.
Here is a question: If you didn’t like mustard and someone made you a sandwich with mustard on it, would you remove the mustard from the sandwich using mustard? Obviously not, that’s downright ridiculous.
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