The weird thing was it wasn’t throughout my whole house. On a Saturday morning a few months ago, I noticed something strange soon after I woke up. There was no electricity in my bedroom or my office, but the rest of the house was fine. At first, I thought it would be a simple fix. Fuses have certainly blown before. The problem is, the box is in my storage shed outside and it is too high for me to reach. Complicating the issue was that I didn’t have any caregivers scheduled for the day and that a caregiver had inadvertently broken my phone a few days beforehand, losing my contact list in the process. The phone numbers of my handyman and friends who might have been able to come over quickly were not etched in my memory. I had a new phone on that day, but not really any way to get ahold of anyone who I thought could help me.
One of the few phone numbers I know belongs to my friend Andrea. After calling and explaining my predicament, she agreed to drive to Lawrence from Lee’s Summit to try and figure things out. (She’s the best!)
When she arrived and fiddled with switches, it was determined that the problem was more serious than I thought. Her father-in-law, a retired electrician, could not find a solution to the problem and suggested we call another electrician. Because it was a Saturday, doing so was going to be expensive, but in trying to push my panic aside I realized that my bedroom has my CPAP machine for my sleep apnea as well as the charger for my electric wheelchair. Obviously, my computer is in my office and I use that several times per day. Furthermore, I had a story due for Lawrence Magazine in a few days that I had not quite finished yet. I needed everything to be working. I decided to have a guy come out who could fix the problem. I don’t do well when I don’t have any power.
Even though I might have shared this story previously, it’s worth retelling in this post.
A few years ago, I hired a new caregiver who was still learning the ropes. During one of her first shifts, I explained, as I always do, that it was important to give me as many choices as possible. Because I am dependent on so many people and I can’t even get myself from place to place, it is vital that I get to make decisions every chance that I get. Doing so makes me feel less helpless and that I have more control over my own life. And when people take my power away, they are essentially hurting my soul, because they are taking my dignity from me as well. This caregiver said that she understood what I was saying and that she would do what I asked. Most caregivers tell me that giving me choices is not difficult. It’s mostly about mindset. So, they call me from the grocery store if there are several options related to an item I said that I wanted. Or they ask me what shirt I want to wear after they ask me if I want to put on short or long sleeves.
Later that day the rookie caregiver drove me to a physical therapy appointment. While I was in my session, she was going to get a few things at the grocery store and then pick me up and take me home. I was all stretched out and after we had gotten me back in the car, she said, “I know we are supposed to have a scheduling meeting on Sunday at 1:00, but I decided that time wouldn’t work for me. So, while you were in physical therapy I called all your other caregivers and we decided to have the meeting at a different time. It is all set up.”
All of these people were supposed to work for me. When I tried to protest, she said: “Nope. It is all done. We are having the meeting at the new time.” The fury and helplessness burned in my belly to such an extent that I could not say a word. That caregiver didn’t last very long.
My first book “More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities” is coming out in May. One of the most important things it says is this:
If someone were to ask me if there was just one thing they could do to be the most respectful toward a person with a disability, my answer would be this. Give as much power as you possibly can, and be mindful of not taking my power away from me in any situation when it can be avoided.
I just don’t do well when I don’t have any power.