Jeremy Klemin recently published an article in the New York Times. Both of his parents have Cerebral Palsy. He discusses how his parents have become “hackers” to make living in an inaccessible world easier.
A bungee cord was hooked to the ceiling at the local accessible gym, allowing his mother to walk on a treadmill with less resistance. She also wrapped the remote that controls her van’s wheelchair lift around the narrow metal pole of the driver seat’s headrest to reach it without getting out.
Over the years, I’ve learned how to use various strategies to make life with CP easier. In my apartment, assistive devices make it easier for me to be independent. In the bathroom, I have bars on the toilet to help ensure that I don’t lose my balance. A bidet makes it easier to use the toilet as well. We have a smart lock and video doorbell as well. My bed is electric, which allows me to change positions on my own. I also have a pager attached to my bed so my PCA can help me in the middle of the night.
Getting dressed is a challenge for me as well. My clothes are easy for me to put on and take off. I don’t wear pants with buttons or zippers. This means I don’t have to wait for someone to help me. I wear slip-on shoes and Billy brand shoes with my AFOs. The zipper makes it easy to get my shoes on and off.
Assistive technology helps me do more on my own. Every day, I check my emails, do online banking, write, read, and watch movies on my iPad. Additionally, I create shopping lists and place orders for supplies for the house using my Amazon Alexa. I can send emails and text messages with Siri on my iPhone. Telehealth allows me to see medical providers without leaving my apartment. Cerebral Palsy prevents me from driving, so telehealth means I don’t have to rely on my PCA to go to the doctor’s office.
Since I was in elementary school, I have used a program called Bookshare. At the touch of a button, I can access thousands of books. I can read everything from a cookbook to a murder mystery. I can read without any physical barriers. Bookshare allowed me to read the same books as my classmates in school. E-books have enabled me to read far more than traditional print books. I don’t have to worry about inaccessible reading materials, and I am more independent.
Cerebral Palsy means that I have to be creative when living my life. I may not achieve my goals in a typical way. Living in an inaccessible world is hard at times. Creativity and ingenuity allow me to do what I want to do. I am thankful that creativity makes living with CP easier.
Klemin, Jeremy. “My Parents Are Hackers out of Necessity.” The New York Times, The New York Times, 25 Sept. 2022, https://www.nytimes.com/2022/09/25/opinion/skateboarding-disability-hacks.html.
Great, detailed description, Grace, of how you use ingenuity and assistive technology to achieve a good quality life!!