By Eva Sweeney.
Art by Rye Garden
This article is written with gender neutral language.
I need physical help with just about everything.
I have Cerebral Palsy, which for me means I can’t walk or speak or use my hands in a functional way.
I use a wheelchair to get around, I talk using a laser pointer and a letter board, and I hire awesome assistants to help me with my daily life. My disability has never stopped me from doing whatever I want to do — it has just made me more creative about how I do those things.
I started working with assistants at five years old, so that is my normal. And as a bonus, I’ve gotten to know all kinds of amazing people when they have worked for me. I guarantee I would not have known most of the people I have worked with if I was not disabled. Most of my former employees are now my really good friends, so that has been a really powerful experience for me.
My assistants are also involved in my dating life. When I start dating someone, I bring an assistant with me so that my date can focus on getting to know me rather than needing to help me with whatever I need. I obviously explain beforehand why I will be bringing an assistant to the date, and all my dates have been fine with this. If they’re not fine with it? No date.
I obviously explain beforehand why I will be bringing an assistant to the date, and all my dates have been fine with this.If they’re not fine with it? No date.
As my new partner and I date more and more, there is the question about if I will let them learn how to help me. In the past, I was super against having my partner do any of my personal care. I have seen many relationships fail because one person does all of the personal care for the other (this sometimes does work, but other times it creates a burden and resentment). So I was really hesitant to let anyone I was dating help me with my care at all. I would even hold my pee on dates rather than let my date know that I needed to go to the bathroom. I am now sure my date would have been cool with helping me, but these ideas held me back.
When I started dating my current partner, it was super casual at first. We would just meet for an hour to hook up once a week, so I really didn’t have to have the discussion with hir about helping — at least at first. However, during one of our post-hookup chats, I really had to pee and so I demanded that ze text my aide because we had not talked about hir helping me at all. I could tell ze was confused about why I was cutting our time short. That night, I wrote hir a ridiculously long email about if ze would be down to learn how to help me pee. I was so awkward about it; ze just said ze was happy to help.
Over the years — with a lot of communication — I have let my partner help me more and more. Still, when I have an assistant around, I have them help me rather than my partner. I still feel a bit weird letting my partner do really personal things for me, but I trust hir to say if ze is uncomfortable. My boundaries shifted from not letting my partner do any of my personal care to being open to having them help from time-to-time. I am still not all the way there yet, but with time and trust, I will get there.
I personally would never let my partner do all my care because I feel that’s way too much for a person whom I am also romantically involved with (or just any one person really). If you find yourself with a partner that wants to help you more than you would like, you need to set boundaries with them—explain why you don’t want them to be your full-time aide/only aide or help you with certain things you are not comfortable with; explain you want to keep the romance and the care separate for the most part and that these boundaries are more about your needs and comfort than their feelings. Any good partner would respect that and work with you and your comfort level.
If you do have a partner that helps you with a lot of your personal care, check in and talk about how it is going for both of you. If there is anything that you like, or can be improved upon, or just isn’t working, take the time to calmly discuss this with your partner and see if there are any solutions you can come up with together.
Just saying you are uncomfortable about your partner helping you gets the conversation started. It creates a space to talk about what you are comfortable with, and what your partner is comfortable with. This can begin slowly. For example, if you need help eating, that’s a fairly simple task, so maybe you start there if you two want a meal alone together. After that meal, talk about how it went for both of you—if you both feel good about it maybe try something a little more intimate, like having them transfer you to the couch so you two can cuddle.
Just saying you are uncomfortable about your partner helping you gets the conversation started. It creates a space to talk about what you are comfortable with, and what your partner is comfortable with.
Being vulnerable and asking for what you want lets your partner in more, and helps them feel connected to you. Yes, sometimes it will feel scary, but it is so worth it. After all, open communication is good for all aspects of a relationship, but especially for a relationship in which one partner has a physical disability.
Eva Sweeney is a 36-year-old genderqueer disabled female who works primarily as a sex educator and freelance writer. Her topics include disabilities and sex, gender, and queer culture. She has been doing Sex and Disability workshops for 15 years and started doing this work because she found a huge lack of good sex-positive information for people with disabilities. Eva wrote the book Queers on Wheels and has traveled the country giving workshops about Sex and Disability. She continues to give workshops online and in person through “Cripping Up Sex with Eva” and she is also available for private consultations.