questions

(Sunday, May 7, 2000)

(by Sandy Goodwick)
    One of the most 'thought about', yet least openly discussed topic (for many individuals with disabilities) is dating, sexuality and relationships issues. For many people, the unsaid "taboo" on talking openly and candidly about such topics has the end result of adding confusion and unwarranted embarrassment to a subject which is basic to society. Undoubtedly, many people "out there" are hoping that others will 'break the ice' and discuss the hard-to-discuss topics, so they too can find meaningful answers to unsaid questions.
    One of our young adults with Moebius asked that 'issues related to relationships' be
discussed in MoebiUS News. Several individuals wrote in. The following is a synthesis of their comments...
    The mother of an adult with Moebius wrote:
    "As a parent of a Moebius child I saw many difficulties that might arise when coming of age for girls, in this case. I found if I talked of "what ifs" before the actual encounter that it helped to deal with the problem. I talked with (my child) as a girl and a woman. I asked about the kissing. (My child) had braces until s/he was almost a senior in high school. That was a second difficulty besides the drooling and drooping lips. S/he would laugh but I felt the relief to at least to be able to discuss it. I offered suggestions.... bringing the fingertips to the partner's lips, or a touch could mean more than the lips if it was sensitive. It was important to show someone that you were aware of that person's needs . After a few dates if not too, s/he should not be embarrassed to ask what the partner would like. Most young people like that you care-to ask.
     (My child) never liked pictures taken in school or in public life. I tried not to ever say to a group which s/he was part of to smile. S/he was so sensitive to that. Starting from kindergarten until High School I would approach each teacher privately about the inability to smile. If I could I was at the school on the day of pictures. Always the photographer seemed not to listen. I remember one time they insisted s/he could smile and s/he made (his/her) face try so hard that THEY were embarrassed. I always wanted to protect (him/her) from that hurt. As s/he got older when they asked (him/her) to smile s/he just said no that he didn't like to show (his/her) teeth. That s/he was a serious person. They accepted that. As for the kissing I remember (my child) laughed and said that s/he would slobber them to death. We did talk. S/he wanted to be a parent and most of all s/he wanted to be married with (his/her) own family. (My child) has had much to give.
    An adult with Moebius writes:
     "My experience of living with Moebius and dating is not that great i'm afraid. I'm now XX and so far my two real xxx-friends were both people that I met at a club for able bodied and physically handicapped people. But as love tends to do it died. I've not dated in the past 5 years. Recently i've started looking at ways to meet Mx Right.
     "Years ago in school we were taught about how it was better to get married and wait until you were ready to have sex, amongst other things. No-one told us how to date or to find the ideal partner.
     "Being disabled does give you a few disadvantages. For instance how do you confront a prospective partner with the fact that you are disabled? If I could make people see past my disability I think i'd have a better chance of getting somewhere. I recently posted a personal ad via Hotmail. I didn't think I'd get many responses and I was right, Lets just say my in box hasn't been over full recently. In the ad i pointed out that I was slightly disabled, might that have put people off? I've got no way of telling but I think so.
     "Many people meet in bars and nightclubs. Frankly I don't have the confidence to go and chat someone up. I'm too afraid of failure!
     "Of course it's not just disabled people who are alone, there's a lot of able bodied people out there. My mother says there's always someone out there for you, but although I love her dearly I don't think she understands the worries I have about relationships. Neither her or my father seem that worried that I've not found anyone, but it's not their problem! It's mine.
     "I guess there's the thought of trying to go out with someone with the same disability as you, but to me that's not the ideal situation. Just because you share a common disability does not mean that you're gonna hit it off.
     "As I grow older (stop me if i'm sounding middle aged here!) I lose faith in finding the right person. I'm increasingly jealous of people in relationships. I know this is not the case but it seems like everyone has someone.....apart from me!

                       Do you have thoughts that you would like to add?
                        Please send them to me - Sandy Goodwick -
                                    [email protected]