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by Carol Ely
I must have been about 13 years old when I first started wondering if anyone would ever find me attractive enough to want to see me in a romantic sense…hearts, flowers, etc. I found out what everyone does: some yes, some no.
I certainly didn't plan it one way or another, but with the exception of one person (my first love who had multiple sclerosis) the "romance" in my life has come from men who don't have a disability. I'd heard the question of "disability or no disability" go both ways. Some people in my life felt that I should only date men who had one, thus eliminating the need to explain mine. Other friends thought it better to date someone who didn't have one, so that I could be with someone who drives, or not have the hassle of dealing with two pieces of mobility equipment. There is no doubt that the argument can go both ways.
In my 20s and 30s I had a couple of female friends without disabilities who would call and offer to pick me up so that we could go out for drinks, a movie or wherever the night took us. At that point in life I did want to date a man without a disability; I thought it would be easier logistically. Unfortunately, as a young adult, the couple of times that I cared for someone enough to think about taking the steps to marriage, I learned that when it came down to the question of whether or not he could deal with my disability for the long haul, the answer was NO. Of course that hurt a lot, so I made the decision not to have another romantic relationship at all. It turned out that resolve lasted quite awhile – for nine years. After awhile I no longer thought about it one way or another, it just was. The women in my family who were closest to me believed that if you look for something you'll never find it, including a man. So I subscribed to that theory too, although I also felt that looking would be pointless and the result the same as before.
One day I met David, a man without a disability, who started talking to me when I was finally comfortable enough to let someone get past, "Hello, how are you?" I had also ventured into unknown territory for me; we are from different ethnic groups. We had general conversations over a period of about three months, with me looking forward to them a little bit more each time. I began to wonder if he was ever going to ask me out or not. (I thought he was taking an incredibly long time to say something!) Finally, the day came and I did a little wheelchair happy dance in the privacy of my apartment.
At this point it's important to me to mention that when we met about 10 years ago my disability posed few challenges in terms of being able to do most of my personal cares independently, though I did have a home health aide who came in to clean my apartment, do my grocery shopping, and help with a few daily living activities. So, I had quite a lot of time when I was available to see him at home without having to be concerned about anyone else being around. Of course it never occurred to me that my needs would change as I aged. Or that those changes would mean that I would need personal care assistance. However, because of past experience, I still thought he'd only be around for a month or two and then disappear because of my disability. Consequently, I didn't think about a long-term relationship colliding with something I'm now very familiar with: aging and disability.
We were about four years into our relationship when I began to notice that it was taking me longer to do things that didn't used to take much time. I used to be able to get in and out of bed and into my chair smoothly and efficiently. However, after another year or so it took 30 to 35 minutes on some days. During the easier years, I used to be able to go from being showered to dressed in about the same amount of time; eventually I had to start getting up between 5:00 and 5:30 in order to be ready to leave for work by 8:00 in the morning. However, even that didn't work after awhile and more often than not I wasn't ready to go when my ride came to pick me up in the morning. Now, the home health aide who for a number of years had to help me with only a few personal cares was needed to get me in and out of bed and dressed in the morning. That was a big step down in the way I felt about myself. I was used to feeling strong and independent.
There was no denying that my physical capabilities were undergoing a drastic change. But one thing in my life remained consistent: David. When I talked about the things I couldn't do anymore he reminded me that there were aches and pains that he had now that he didn't have when we met either. Since I'm older than he is, I wondered if I was going downhill so fast that he wouldn't stick around. He always came back with some version of, "I'm still here, aren't I?"
Then came the "big test," at least as far as I was concerned: I had to have major surgery. Thankfully, I didn't realize how much postoperative pain there would be beforehand or I would have been terrified. What followed was weeks of recuperation and selected visitors, though he wasn't one of them because I felt and looked like I'd been in a train wreck and I didn't feel like I wanted to see him. Of course this meant no intimacy either, which has always been high on the list for both of us. We talked a lot on the phone though, and I waited for the "this isn't working for me anymore" conversation… but it never came. As I regained my strength after surgery, it was clear that we were both waiting for the day when closeness was on again.
So, where are we now? In a place where we both realize (especially me) that aging is inevitable and that doing it with a disability brings even more challenges. However, along the way I've also learned to speak up about the kind of support that I need from him and how to ask for it in a way that respects that even if he's not overtly romantic, he understands that sometimes hearing something like, "For any man that hasn't known you it's his loss" goes a long way with me.
I didn't think this would end up being a long-standing relationship, but since it is, I've learned a few things along the way:
Carol Ely is Community Program Specialist at the Institute on Community Integration, University of Minnesota, Minneapolis. She may be reached at 612/626-3346 or email@example.com.
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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/232). Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.). (Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/232/232.pdf.
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