Do you like the steering wheel up or down? Do you prefer the rearview mirror tilted to the left or right? Do you like your showers warmer or cooler? Do you tie your shoes loose or tight? Do you have a certain way you like your pillow at night? There are thousands of things that people adjust to their personal preference. Most of the time, people automatically make these minor adjustments without even thinking about it. People do these things to make life easier or more comfortable. Obviously, every person has different preferences for everything. That’s what makes us unique individuals. People with disabilities are no different. We have preferences about how we like everything just like everyone else. In fact, many times, we have unique preferences just based on functionality.

A few weeks ago, my sweet cousin went to my class reunion with me as my date/caregiver. She’s a speech therapist and has worked with many people with varying abilities. She has helped feed me at family gatherings before and obviously knows how I communicate. She had never been with me solo at an event with me, though. As my mom was helping me get ready, she and I were making a mental note of things that we should explain to my cousin before we go. These things wouldn’t be brought up in normal conversation with anyone, but these seemingly miniscule things make my life so much easier. We probably bombarded my poor cousin, but she did a fantastic job of making sure she did everything right. Those small details made things so much easier and it was a really fun night!

What are the small details I’m talking about? To most people, these won’t make any sense, but, again, personal preferences are what make life enjoyable.  For starters, my left side of my body has more control than the right. For whatever reason, it’s so much easier if people sit or stand on my left side to help me eat or drink. When people sit on my right side, because of the way I sit, it’s much more difficult to turn my head and maneuver my body to be able to eat. My right arm also tends to be much more spastic, so, often, my arm accidentally hits the person. On more than one occasion, I accidentally hit food or drink out of someone’s hands. I wish I’d had the confidence to speak up about this when I was younger because it probably would have made things a lot easier. It wasn’t until a few years ago that I started asking people to please sit on my left side. Chalk it up to getting older, I guess.

Another really unique quirk I constantly find myself asking people who help me to do is to move my cell phone like a half inch up on the mount on my wheelchair. Again, it’s hard to explain, but my cell phone mount is right below my joystick on my chair, and the top of my phone needs to be up against the bottom of the joystick. It leaves a half inch of the mount showing. That half inch makes a huge difference for my access. If someone puts it lower, I have a really hard time accessing it. Whenever we train new caregivers, I make sure to have the veteran worker explain it to the trainee. Again, people probably think that I’m crazy for making a production about a half inch, but, in my world, it makes a huge difference.

There are multiple other small quirks I have to make life easier. I need my shoes tied extremely tight otherwise I will kick them off. When I get in bed at night, my head has to be touching the headboard in order to make sure that I can reach my phone and door opener. When workers make my lunch, they have to leave the zip lock bags open because I’m not able to open them. The straw in my water bottle has to be pointing a specific way so I can reach it. Seemingly mundane things like these are what help keep me as independent as possible.

I’ve discussed this a little bit in previous entries, but food is another example of when personal preference comes into play. Obviously, there is the basic like or dislike of individual foods, but, beyond that, there are some common preferences among many people who have cerebral palsy. For whatever reason, certain textures of food really bother some of us. A lot foods that have certain filling tend to bother many people. For example, yogurt and pies absolutely gross me out. When I try to eat something like that, my gag reflex (again, common among people who have cerebral palsy) kicks in and I almost lose my cookies. Yet, I can eat ice cream (I often have the debate with people—yogurt is not the same texture as ice cream) and some puddings. Some people who have cp need their food extremely hot. Another thing we’ve recently noticed is that a lot of people with different abilities tend to prefer to eat one food at a time whether than switching between multiple foods. I don’t know if there is any research on this, but some of us think it’s easier for our palates to adjust to one texture at a time whether than switching between different textures. Again, a small, but important preference.

Everyone has small quirks that they do to be comfortable. Most of the time, people don’t even realize that they have them, but, when you rely on others for physical assistance, those quirks need to be communicated. Sometimes, people may think you’re overly particular, but that’s ok. Those quirks often allow you to be as independent as possible. I have a ton of quirks that are truly based on functionality. I continue to learn small quirks that makes things easier for me. They make a world of difference!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.