It is challenging to set boundaries when you have Cerebral Palsy. When you rely on other people to shower and use the bathroom, privacy is not an option.
Hiring a new PCA is uncomfortable initially. Imagine what it would be like to hire strangers to help you use the restroom, get dressed, or bathe. They need to know that the job is intimate. It isn’t always easy to find someone who works well with you as a PCA.
At times, my PCAs haven’t understood their role. In the past, it felt like my PCAs thought they were my mother. They often didn’t understand that I wanted privacy.
During my freshman year in college, my PCA criticized my choice of a grilled cheese sandwich and butternut squash soup for lunch. It was embarrassing and infantilizing. At 19, I could pick out my lunch like any other college student.
PCAs assist me with activities of daily living. There are very few things you don’t share with someone who helps you use the bathroom, but I want them to understand that they are my employee. They are not a friend or family member.
PCAs shouldn’t ask to meet friends or family members. A client’s personal life should remain private. A former PCA asked to meet my friends and didn’t understand why I said no. She often asked me what I was doing with my friends on the weekend. Home care providers don’t need to know anything not pertinent to their job.
The same PCA asked to borrow my debit card on multiple occasions. In any other profession, people wouldn’t ask their employer for money. However, because of the job’s intimate nature, lines can become blurred quickly.
Disabled people have the right to privacy in their daily lives. Every day, we have to deal with various new people and situations. Setting boundaries is acceptable. We should be treated with dignity and heard. Requiring help does not preclude us from making our own decisions and controlling our lives.