The other day I had a friend over for dinner. Seeing as my 30th birthday is fast approaching (what debauchery can I accomplish over the remaining three days of my 20s?), he brought over a cheeky birthday card. (There was quite literally an image of a guy's nice bum cheeks on the front.) It's awesome that all my friends are so accepting of my delicious dirtiness; I am honored to be that friend. After we had laughed at it, he asked me where he should put it. He wanted to leave it out but didn't want me to "get in trouble" with my attendants. We both reasoned that I am an adult and should be able to do what I want. While this is true, I couldn't help feeling awkward about it when it came to my attendants.
Before delving into it too far, I feel it's important to unpack what I mean when I say "attendant care." I live in what is known as supportive housing -- that is, I live in rent-subsidized housing wherein care is provided in part by the state/province and charitable organizations. This means that I have personal support workers come in to assist me with my activities of daily living (bathing, dressing, toileting, etc.). These individuals are not nurses, nor can they do anything medical. That said, they have seen me in all states of undress (let that visual sink in) and have helped me with my more intimate care needs (showering, etc.).
In many of these programs, sex and sexuality are not talked about in any capacity. Often there are policies prohibiting any discussion around sex. The individual comes in, assists you and leaves you to go about your day. The issue I have with attendant care programs and sexuality (or the lack thereof) is the impact that this has on the person with the disability. You often feel as though you are not allowed to express yourself for fear that you might offend an individual whom you rely on physically. What happens if they find out you're LGBTQ and judge you, hurt you, or worse, leave you needing care? There was an attendant who tried to tell me that if I just found Jesus, I would be OK, and tried her best to convert me. There have been nights when I've had a guest over for a romantic rendezvous (that sounds so much classier, right?) and lied through my teeth to my attendant about what I was doing, for fear of being judged or making them see me differently. The shame of being sexual at all hit me like a ton of bricks. Moreover, if I am lucky enough to have the guy stay over (crazy, right?), I usher him out like some guilt-stricken teenager before my attendant arrives, because under no circumstances can my attendant see this. While I consider myself to be an open person, even I am surprised by how I'll put one foot back in the closet simply to appease my attendants. It is also troubling how attendants can remove one's sex and sexuality so easily, whether intentionally or not.
I remember one such instance wherein my attendant was putting on my condom catheter (a condom attached to a urine bag, which allows me to pee freely throughout the day), and as she was doing this, she said, "OK, get hard." I was shocked, taken aback and hurt. In one fell swoop she had diminished my sexuality, my manhood and my sex-esteem to this mechanical action. When I called her out and asked her not to do this, she said she wasn't aware that this was inappropriate. This affects me still, causing me to constantly question my viability as a sexual being. When all your dangly bits are constantly managed by attendant care workers, you begin to lose that part of you that makes you a sexual person. You begin to feel as though you are this creature in need of care and nothing more.
I am lucky in that once I am in my wheelchair, I am fairly independent. However, some persons with disabilities need 24-hour attendant care. Oh, yeah, there's nothing sexier than having a chaperone with you while you're trying to get in the game. Hawt.
Another issue that can arise in these programs is misplaced feelings for the care worker. When I was in university, I had university students (a healthy mix of males and females) doing my care. This meant that every now and then I'd get a cute guy coming in to wake me up. (At this point I need you to picture me saying "good morning" in my sexiest, most seductive voice possible.) The fantasy is there because they are attendants, so if you were to engage in a romantic relationship with them, you wouldn't have to have the "hey, I am disabled" conversation. They could be showering you one day, the imaginary sexy music would start, and the rest would be this amazingly steamy moment wherein your attendant really attends to your "needs." The reality would be much more complicated, though: They could lose their job, and you could lose your home. Not so hot, right?
The question then becomes how to retain your sexual freedom in these systems that are both your home and a work environment. I haven't the answer, but I do believe that we must start engaging in discussions about sex with attendant care programs. We need to remind these programs that underneath all our needs, there is still a person there. Obviously you don't need to go into great detail about your sexy times (though with some care workers, my innately dirty mind has been to my benefit, as it's broken the ice and brought us closer), but you should be allowed to have sexy posters on your wall, cards with bums out if you so choose, and the freedom to have over whom you want when you want, without consequence or shame. Attendants should be supporting your sexual independence and not deterring or dehumanizing it. That said, wherever possible, the person with the disability shouldn't overstep and make the worker feel uncomfortable. It is a difficult balancing act indeed, and one that can have rippling impacts on the person with the disability and his orher sexual confidence and development.
So to all those of us living somewhere between independence and an institutional structure: Let's talk about sex and remind those working with us that there is so much more to us than just our activities of daily living (ADL). We deserve the right to have awesome daily loving too!
