When I decided to enter the Ms. Wheelchair Kansas pageant in 2007, part of the application process was to come up with a platform. If I was crowned, what did I want my message to be? What did I want people to take away from our interactions during that year? Friends made all kinds of suggestions. They told me I should speak about the importance of accessible parking or accessible housing. Although those are important issues, something about them felt off for me personally. I didn’t want to focus on how society might be “failing” people with disabilities. Instead, I wanted to focus somehow on the ability every person has within them. After several days of pondering the possibilities, I came up with the platform that felt right to me: Use Your Power!
I have always believed that every person has power within them. As people with disabilities, I think it is up to us to use the power that we have to make a positive difference in our lives. It is up to us to advocate for what we need, to fight for our rights when it’s necessary, and to insist on inclusion in all we want to do.
Do I think society needs to be accessible and accommodating? Hell yes! Absolutely! I also think we as individuals with disabilities need to communicate in such a way to ensure that attitudes and interactions with everyone in society are accessible as well.
During my reign as Ms. Wheelchair Kansas, I encouraged countless people to use their power and not to give it away.
In the years since the concept has stayed with me. But as much as I hate to admit it, I don’t always put it into practice. Circumstances this summer have changed that.
I have written extensively about the fact that it takes a team of caregivers to help me live my best life possible. They help me with cooking and laundry, getting dressed and getting from place to place, and a whole lot more. What I don’t share with many people is what a difficult position that puts me in. On paper, I am the boss of my caregivers. In reality, I am at their mercy. If a caregiver decides to show up two hours late for their shift, there is not much I can do about it. And it is tough to fire people who you depend on for your livelihood. Especially when there aren’t twenty people waiting in the wings who are willing to take their place.
Last year I had a fabulous team of caregivers. I wanted everybody to be happy and stick with me so I developed a very bad habit. I let my caregivers do pretty much whatever they asked me because I was scared to death they would quit if I didn’t. They switched shifts that were scheduled and I let them come in at later times so they could do what they wanted to do. I did stuff like that even when what my caregivers wanted to do made my life more difficult. And unfortunately, the pattern continued for a very long time.
But this summer I had some help examining the fact that I need caregivers in my life. Through working with a phenomenal coach, (Thanks Brenda) I was reminded that caregivers are supposed to make my life easier, not the other way around. Additionally, caregivers working for me get as much as they give. This is not a one-sided situation. While working with me people learn more about disability awareness and empowerment, how to communicate effectively with people with disabilities and various levels of compassion. They can take those skills with them wherever they go in life. We also laugh often and have a lot of fun. Therefore, I can accommodate the needs of the people who work for me if I want to do that. However that shouldn’t ever be at the expense of getting my needs met. My mindset slowly started to shift, and as it did I began to change my expectations as well as my policies.
The caregiver who was supposed to come back to work for me after his summer job was over was used to the way things were when he left. A few weeks ago he sent me a tentative schedule. Technically he requested the times he wanted to work and the days he always wanted off, but it turns out he wasn’t really asking. When I told him some of his requests wouldn’t work for me and suggested that we compromise, he quit without notice over an email.
Now I am fully aware that I am the one who changed in this situation. He did not. Since he has always gotten what wanted from me in the past, I can see how it would reasonable for him to assume and expect that he would continue to get whatever he wanted for the duration of his employment. I can’t fault him for that. I had set up a situation that made it easy for my caregivers to take advantage of me. Quitting without notice over an email though, that is a different story. When the plan was always to come back after your summer job and you know someone is dependent on you to meet some basic needs, quitting without notice is just cruel. Plain and simple.
I have learned through this situation that sometimes using your power means fighting for what you want, and sometimes it means getting rid of what you don’t want. Sometimes using your power can be sad and sometimes it can be stressful.
I am still looking for reliable, trustworthy caregivers to meet my needs. I will find people who respect me and understand what the job of a caregiver is supposed to be about.
And in the process, from this point forward I plan to use my power. I am done giving it all away.