Several years ago I served as a leadership program director at a Christian camp. A personal care attendant stayed on-site to help me with meals, washroom breaks, getting in and out of bed and other tasks of daily living. This enabled me and my co-director to fulfill the responsibilities of facilitating Bible studies, service projects, and other leadership development activities for teenagers. At times I felt bad because I knew that my physical limitations prevented us from engaging in athletics or other physical activities as a group, but we still had a wonderful time together, filled with great conversations and lots of laughter.
None of the participants were responsible to assist me with anything of a personal nature. I made an effort to be as discreet as possible but on several occasions, such as when eating together or getting in and out of the pool, they observed my assistant helping me. I had no idea how this was shaping them and I’m not sure they did either.
The girls that I counseled as teenagers are now in their mid-20s. They have pursued various career paths including church leadership, library science, kinesiology and raising families of their own. All of them are especially mindful of accessibility in their respective disciplines. This highlights the value of inclusion for people with disabilities as well as people without disabilities around them, and the potential influence of inclusion on society as a whole.
None of the leadership program participants have any formal training as a support worker. Yet, all of them are very aware of how to help me stay organized and how to assist me in various settings such as a restaurant. This underscores the importance of relationship between people of various abilities. Helping me at a restaurant was not a requirement put on them. Their awareness and ability to assist me if needed developed over time as we shared a lot of life together. They observed and asked questions. It is not as though they feel responsible for me: I know this because one time as we were leaving a restaurant and I was goofing around rather than focusing on driving my chair properly I accidentally drove one wheel off of the sidewalk, meaning that for a moment I was vulnerable to tipping over. I could have gotten hurt but I did not and we still laugh about it. In the meantime a stranger observing the incident from afar approached us and scolded my friend, “That was very dangerous… You’re supposed to be taking care of her,” to which my friend gave the best response, “No I’m not. I’m just her friend!”
None of them have ever provided personal care for me and the boundary between friend and assistant has been difficult to maintain. This is because the importance of service is ingrained on their hearts: they have a sense of what I need and they are always eager to help. It is always difficult for me to find enough workers to maintain my active lifestyle consistently and there have been times when a part-time job would really benefit them.
Previously, if I knew someone that offered quality support informally, my first reaction was to formalize it as a paid position. I have realized that this was not only about helping them but also ensuring that I would not feel like a burden. I have realized that this is not how God’s economy works. We are in fact called to bear one another’s burdens (Gal 6:2).
The mutual benefits of maintaining natural support as opposed to paid positions include that relational reciprocity is more evident. If one of the leadership program participants helps me with something we spend the majority of time talking about how our lives are going, rather than working as efficiently as possible, which is necessary with a personal care attendant. Our interactions are not confined by work schedules and salary. They are happy to do things that don’t fit into my regular routine like paint my house or organize my office. They go above and beyond what some attendants might do, filling in the gaps with things like decorating my house for Christmas or cleaning the kitchen extra thoroughly. They are motivated by love rather than simply following my directions as efficiently as possible.
I hope this is encouraging to people who are wary of helpers without qualifications being involved in their care or that of a loved one. There are blessings that come from simply doing life together in an informal way; necessary skills can be taught to all kinds of people.
I hope this is similarly encouraging to people who desire to be helpful to someone with disabilities but do not believe they have the skills to do so. Your ability to be increasingly helpful willgrow as you get to know the individual(s) you are serving. Regardless of your level of expertise, your support can make a difference.
Nicely done, Chantal!