It was a summer evening a few years back. The days were long and green outside and a new caregiver was still green around the ears. He had just started the process of learning the ropes. The sun was setting and we had just finished making dinner on that particular day. As he plated the food I invited him to eat with me, and after he accepted we sat in silence at the start of the meal, not familiar enough with each other to attempt much conversation.
After a few minutes, I could tell he was watching, not in a bad way, but he was taking note of the fact that I ate my entire meal before I stopped to take a sip of water.
He stared, but remained quiet.
During his next shift later that week, he was preparing dinner once again and he randomly said: “For this meal, we are going to slow down and drink between bites instead of gobbling the food up so fast.” He said it with the authority that told me he had decided it was up to him to correct my “bad table manners.” I was caught off guard at first, and then gently told him he needed to back off.
If he had asked, I would have explained that my cerebral palsy limits my finger dexterity, which in turn makes it difficult to switch back and forth between holding utensils and grasping a cup. To make things easier on myself, I eat first.
A few months earlier I was with another caregiver. We had spent the morning shopping downtown when we decided we were hungry. Sitting in a crowded, noisy restaurant about an hour later, it came time to pay the bill. With both hands, I fumbled in my purse for a bit, and after several attempts successfully clutched my credit card and put it on the table. His impatience was obvious.
After a minute he said, “It really would be easier if you carried cash in situations like this.” He was not thinking about the fact that the same limited finger dexterity I have makes holding a credit card much easier than counting out currency.
I had an appointment a few weeks back. The temperature had dropped quite suddenly and the guy who held the door open for me casually asked me where my jacket was. I typically don’t wear one and told him so.
He didn’t realize that bulky winter coats are extremely confining for me and make it much more difficult for me to push my wheelchair. The quickest way for me to get out of the cold is to zip my hoodie up to my chin and to make sure my gloves stay dry.
The reaction tends to be the same when I show people my dance videos. It doesn’t make sense to most that I am dressed in a formal gown and take extra care to make sure that my hair and my makeup are perfect, all while wearing tennis shoes. They look confused and some comment on their disapproval, telling me that the tennis shoes take away from my performance. They don’t understand that I need the support of tennis shoes for balance, and if I wore any other shoes, particularly dress ones, chances are good that I would fall out of my wheelchair while I was dancing.
I completely “get” that the day to day details of my disability are not something many others consider. When they only look at something that I do on the surface, it is easy for them to wonder why I don’t accomplish some tasks in the same way that most other people would. Most of the time, I can shake that stuff off as well-meant ignorance and not let it get under my skin. My objection only comes when people look at the way I do things without asking my motivation, and then quickly decide out of context that there is a better way.
These days whenever I have a new caregiver who is trying to learn my routine, I sincerely request that they ask questions instead of making assumptions. Things usually work out better that way for everyone.
Here is the thing. My disability affects me in a million different ways that many people don’t have to think about. When they make suggestions, I realize most of them have the best of intentions.
However, my reality is that I have lived with my disability all of my life, and over time I have figured out how to do what I need to do in the way that works best for me. If someone truly wants to know why I do some things a certain way, I am happy to tell them. Really. But that doesn’t mean that their questions are always appropriate and it shouldn’t mean that it is always necessary for me to defend myself.
On days when I don’t have enough emotional energy to explain what I am doing, I honestly feel that I shouldn’t have to.
As a wheelchair user, some days it’s easier to just take the stares.