Since the day I was born, my body has not belonged to me. Instead, it has belonged to a seemingly endless catalog of doctors, therapists, and personal care assistants. It isn’t easy to feel comfortable in your own body when you are constantly being looked at and touched by people helping you or by people who have to take measurements of the range of motion in your joints. Sometimes, I wonder what it would be like to shower and get dressed with complete privacy. Imagine hiring a perfect stranger to help you get dressed, showered, and use the restroom. For many disabled people, this is a reality of their lives.
Needing assistance with such personal tasks has made my relationship with my body incredibly complicated. I find it extremely difficult to see myself as a whole human being. I also find it hard to pursue an intimate relationship with somebody if I chose to. My body feels like it is on public display for therapists, doctors, and PCAs to do whatever they please as long as they deem it to be helpful by their standards.
In one of my college courses, the professor discussed the use of haptics as a part of nonverbal communication. Haptics is any form of interaction involving touch. Haptic communication is the means by which people and other animals communicate via physical touch. As someone who has cerebral palsy, the most important form of nonverbal communication that is present in my life is haptics. Haptics is not a choice, but rather a necessity.
The style of haptics used also differs depending on who is helping me at any given time. For instance, if my mother is helping me get dressed, her touch is gentle. Whenever a personal care assistant is helping me, their touch is much rougher than a trusted friend or family member.
This is not because my personal care assistants do not care about me, but rather because my personal care assistants must maintain a professional relationship with me. When my mother dresses me, she does it with the same maternal touch as she did almost 22 years ago when I was an infant. Whereas with a personal care assistant, helping me get dressed and showering is merely a part of their job description. This is why I have always prefered to have somebody other than a personal care assistant dress and shower me. However, needing personal care assistants is just the reality of my life.
To me, the fact that I require help with activities of daily living doesn’t negate the need for privacy. If I refuse help from somebody, it should be respected, and I deserve to be listened to. My disability doesn’t mean that I can’t make my own choices when it comes to care.
I learned a lot from reading about your experience.
Grace you are awesome I learned so much you are a brave woman. Love you.
Grace I am so glad you have enough clarity by that I mean but your intellect over your emotions when you share your story For me it not only gives information I didn’t have. but also a way to integrate your experience into my life. You don’t know me but I to have issue that made me assume I would never be involved with anyone on the most intermit level. Please don’t assume that’s a fact, always stay open to possibilities. Thank You Grace for bringing me to yet another enlightenment
So much truth and so eye-opening
Thank you Grace for sharing your story and reminding everyone how physically challenged people truly feel. I love all your emotions and I love your strong convictions!