Disability and Body Image:

Anyone who knows me knows that I require the help of PCAs to accomplish the mundane tasks of daily life including getting dressed and taking a shower. 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. I am not at all interested in the idea of having an intimate relationship because it is difficult for me to become excited about such a relationship. Because eventually, my partner would most likely have to help me with tasks of daily living. It would be hard to be intimate with the same person who assists you in using the restroom or taking a shower.

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. I don’t have much say in who has access to my body. I remember being amazed when my current PT first asked “Is it okay if I move your legs this way or is that uncomfortable”? I rarely am asked by a professional if something that they’re doing makes me uncomfortable. In addition, the PT spoke directly to me rather than my PCA. This shows that my PT sees me as a human being and not just as his patient. Too often, people address my PCAs instead of me directly.

Sometimes, I think that because of their specialized knowledge, professionals feel like they know what is best for each patient. It is impossible to know precisely what every patient needs when it comes to their comfort levels. Everyone is entitled to their own thoughts and preferences when it comes to caregiving and medical care.

A lifetime of requiring assistance with my care needs has made me feel unworthy of dignity, respect, and privacy. I have a right to decide whether or not a particular PCA is hired and who provides my care. 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. Most likely, I have a good reason for refusing help from somebody. My disability doesn’t mean that I can’t make my own choices when it comes to care.

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