On March 11, actor Micah Fowler will be the recipient of the Trailblazer Award at the United Cerebral Palsy of Los Angeles' (UCPLA) fourth annual Art of Care gala, at the Petersen …
Cerebral palsy (CP) has affected me for as long as I can remember, in ways both large and small. Physically, it limits my ability to do some tasks that require fine manual dexterity, such as meal preparation or building model kits. CP often robs my hands of the necessary steadiness, and on occasion I’ll experience what doctors call “intention tremors.” This means that my hand – usually my left – will shake when I’m doing something that requires fine hand control, like, say, tying my shoes or using a computer mouse. The tremors start subtly when I start doing something, then, the longer it takes me to accomplish a task, they’ll get worse. Sometimes I can make the tremors stop by pausing and letting my hand rest a while. Sometimes, though, I can’t.
I can cook – I learned to make good food by watching Mom over the many years that we lived together and I enjoy doing so. But sometimes I need help when I make a dish that requires the cutting of vegetables or slicing meat, fish, or poultry. I can use cutlery if no one is around; I’m not that helpless. But I am more likely to cut my hands while slicing carrots or dicing tomatoes than most people, so I ask for help when I need it.
When I was a young boy in the 1960s and ‘70s, my CP gave me a hard time with manual tasks that non-disabled people often take for granted. I didn’t like button-down shirts because it was a hassle for me to do the buttoning and unbuttoning unaided.
I also had to ask people to tie my shoelaces for me at least three times a day, sometimes more. I hated being so dependent; my mother tried hard to raise me as if I didn’t have a disability, but these limitations always reminded me that I had CP.
Now, I don’t recall if I went to an occupational therapist when we lived in South America between 1967 and early 1972. It’s possible that I did, of course, but my memories of that five-year period are hazy and unreliable.
However, once we moved back to the U.S. in 1972 and I was enrolled as a Special Education student at Tropical Elementary School, I had to go to three different types of therapy on campus – occupational, physical, and speech. All of them were important, and each addressed specific problems related to my disability.
Yet of the three types, occupational therapy is the one that I consider the most crucial.
Don’t get me wrong. Physical therapy and speech therapy helped alleviate some of the effects of CP on my body and improved my ability to enunciate properly. I don’t think I could have improved my walking ability, sung in two school choirs, or given oral presentations in several of my college classes without having had either physical or speech therapy when I was a kid.
Although the term “occupational therapy” sounds as though it’s somehow related to the workplace, it really refers to the techniques that help individuals with CP do the necessary tasks for daily living. OT focuses on such areas as self-care, housekeeping, and even leisure activities.
In my case, my OT sessions were geared toward helping me with the problems that I have with manual dexterity and eye-hand coordination. Before I entered the Special Education program at Tropical, I was terribly dependent on my mom and other adults as far as daily tasks were concerned. I couldn’t, for instance, cut my own steaks or chicken at the dinner table; I am left-handed and have a hard time using my right.
I could hold a fork well enough with my “good” hand, but whenever I attempted to use my “weak” hand to use a knife, it would take me such a long time to cut the meat or poultry that my food would get cold and I’d get frustrated. I wouldn’t throw a fit or anything so melodramatic; instead, I’d just eat the side dishes and leave the hard-to-cut stuff on the plate, uneaten. Sometimes I’d fight through my embarrassment – I hated having to ask for help – and get my mom or older half-sister to cut my meat for me. Sometimes, my mom would simply cut up my steak (or pork loin, or roast beef) before she ate her dinner.
As I said earlier, I also had problems dressing on my own. Zippers and snap-type pants fasteners were easy for me to deal with, but button-and-eye fasteners were not. I also tended to wear a lot of sweatshirts or T-shirts with few or no buttons at all to avoid the hassles I had with button-down shirts. And once we moved back to subtropical South Florida from the cold mountain climate of Bogota, Colombia, I preferred to be barefoot at home rather than wear sneakers so I wouldn’t have to worry about the shoelaces.
The way I remember it, I had two problems with buttoning shirts. First, my ability (or lack thereof) to button shirts and, on occasion, pants was determined by the size of the buttons. If the buttons and their matching eyeholes were large, as they are on pajama tops, I could manipulate them somewhat easily.
But if they were small, as those on your average shirt usually are, I couldn’t quite grasp them or insert the buttons into the eyeholes. I’d try, of course, simply because I was aware that I should not be overly dependent on help from others, but back then I’d get easily frustrated. Worse still, sometimes the frustration would be too much for me to handle and I would start to cry.
The second problem with buttons was that even if I managed to insert a button into an eyehole, two times out of three I would get it in the wrong hole and my shirt would end up looking as if I’d buttoned it while under the influence of alcohol. Sometimes I’d be so thrilled that I had buttoned my shirt that I didn’t notice, only to be told that I would have to unbutton and repeat the process till I got it right. This was okay with me when it wasn’t a time-critical occasion, but if it was on a school day and I needed to get dressed in a hurry, it was frustrating.
As I recall, one of the first things that Mrs. Adams, my occupational therapist at Tropical Elementary, had me do was learn how to handle buttons properly. She then showed me a buttoning frame, which was essentially a 30.5 cm x 31.5 cm piece of fabric stretched out between two pieces of wood. It also had five buttons and their corresponding eyeholes.
“Now then, Alex,” Mrs. Adams said as she set the buttoning frame on the table in front of me, “I want you to practice buttoning by using this.”
I wasn’t thrilled at the idea, but I didn’t like having to ask Mom, my older half-sister (who was then living with us), or any adult to help me button my shirts. I was, after all, 10 years old and disliked being treated as if I couldn’t do things for myself.
I took a deep breath, gave Mrs. Adams a determined look, then started to put the buttons into the eyeholes and then unbuttoning them. It took me a couple of tries – and a lot of under-my-breath swearing – but the size of the buttons was perfect for fingers that weren’t accustomed to fiddling with small things.
It took two one-hour sessions, but eventually, I got the hang of using the buttoning frame. Mrs. Adams expressed her approval at my progress, but it was only the beginning. “Okay, Alex. Good job, but now you need to practice buttoning and unbuttoning your own shirt.” She pointed meaningfully at my plaid short-sleeve shirt. “Starting…now.”
I made an Oh yuck grimace, but Mrs. Adams wouldn’t have any of it. She gave me a stern look. Reluctantly, I slowly unbuttoned my shirt, which revealed the blue T-shirt I liked to wear under it. I bit my lip and started to button my shirt – with my usual button-in-the-wrong-eyehole technique.
“Um, maybe you should try buttoning your shirt from the bottom button up instead from the top button down, Alex,” Mrs. Adams said.
Once again, I unbuttoned my shirt and did as Mrs. Adams suggested. The buttons were small and my fingertips were numb from the previous attempt at buttoning, but my therapist was relentless. She wanted me to button my shirt at least to the halfway mark before the session ended. I wasn’t thrilled, but I was also self-aware enough to know that I needed to master this skill.
So I kept trying. It wasn’t easy; sometimes I’d get the button halfway into the eyehole and, thinking my job was done, leave it where it was instead of pushing it in all the way through. Once in a while, the button would miraculously slip into the eyehole, but nine times out of ten it would pop back out.
Mrs. Adams admonished me, saying that I couldn’t just do a task halfway and leave the rest up to luck or God. (If Star Wars had been released in 1973, I probably would have added the Force, too.)
Chastened, I forced myself to focus on the task at hand. Slowly, laboriously, and even painfully, I buttoned my shirt up to the halfway point. This time, the buttons and eyeholes matched correctly. Mrs. Adams gave me a small smile and a nod of approval.
Over time, Mrs. Adams not only got me to button my shirt all the way up, but she taught me how to do the same task from the top down. She also taught me how to use scissors correctly (the ones with blunt ends that most kids used to cut construction paper in art class, not the pointy ones used by most adults).
Most importantly, though, she encouraged me to play board games such as Monopoly and Stratego so I could pick up and handle smaller items while enjoying leisure time with my classmates and friends.
The passage of time has erased my memories of many of the “life hacks” Mrs. Adams and other OT specialists taught me while I was at Tropical Elementary. Still, I remember how she taught me how to master a basic skill that I use on an everyday basis. This seemingly small victory was just the first of many, and it gave me the confidence to try tasks that once seemed impossible.
Not long after that, I started learning how to cook – my first specialty was scrambled eggs – and use the oven to heat frozen TV dinners. True, I wouldn’t live independently till my mother passed away last year (except for a three-month stint as a college student in the Semester in Spain program), but I was able to fend for myself a bit more – thanks to the skills of my occupational therapists.