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As raising my kids has been a fully collaborative affair, The following diary is also one (the wife wrote it, and I'll post in support)

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
On Monday I had a long conversation with the angry mother of my son’s fiancée about whether or not developmentally disabled people should be able to have sex. Just part of what comes with parenting disabled kids who have inexplicably turned into disabled adults. Some of what follows is pretty intimate, so I’ve changed the names of everyone involved.
follow across the orange divide

Our son Victor is 21. He lifts weights at the Y, goes to the movies, watches pro wrestling, plays games on his X-Box. He travels by BART and bus and uses a debit card to buy stuff. He has a circle of friends and a girlfriend—who is now his fiancée—named Mary. They’re both mildly developmentally disabled.

We raised Victor to be as independent as possible. Mary was raised to be as safe as possible. She’s part of a warm, extended family and loves the family parties that happen almost every weekend. When Victor first asked her to come to our house for a visit she was so frightened of being with strangers that she couldn’t bring herself to come with us in the car when we went to pick her up. She’s come so far since then! She’s even been on vacation with us twice. And Victor has become a favorite among Mary’s large family.

They started talking about marriage almost as soon as they started dating, now over two years ago. Victor has always wanted to marry—almost everyone in our extended family is paired—and we’ve hoped it would happen for him. Due to a huge stroke of good luck he doesn’t have to worry about things from a financial perspective. But how much he and Mary understand about what marriage means isn’t completely clear. When the subject first came up we kept reminding Victor that most people date several or even many people before they settle down. But he was doggedly committed to Mary, and in February of this year they became engaged. Our greatest concern was a feeling that Mary’s protective parents had no intention of ever letting her marry, at least in the full sense of the word. I think they’ve always assumed that Mary would live with and be taken care of by their family community. They didn’t object to the engagement, but we wondered if it was just a way to let Mary have a fantasy that would make her happy. (Mary’s parents don’t have a history of being straight with her about her disabilities and limitations—when we first met her she still believed she would someday go to college and become a teacher.) Of course Mary is legally able to marry if she chooses, but her deep sense of belonging in her family will, I think, always prevent her from leaving home without her mother’s blessing.

Recently Mary’s mother, Julie, learned that Victor and Mary have had sex (using condoms). Hence the phone conversation. The two families have different philosophies. Ours is that sex is part of a full life and that Victor and Mary are entitled to have it—and also that it is a deep, deep drive and it’s unrealistic to try to curtail it! We hoped that Mary’s mother would take her to the doctor and get the most effective and safe birth control available. Julie’s philosophy is that Mary is not ready for sex and while she’s living at home she’s not going to have it and that’s final. She attributed some of this unreadiness to hygiene issues. I urged Julie to use one of the many free services available to those who are developmentally disabled in California so that she could get some help with these issues. I know Mary would feel so proud if she could experience more success in this area. But I sensed a resistance, a commitment to the status quo. It’s possible that in her culture it’s an acknowledgment of family failure to turn to the government in these matters. Just speculating here.

And though she didn’t say so, I also sensed that the real unreadiness Julie referred to was developmental. In other words, developmentally disabled people just shouldn’t have sex. Impasse.

Julie also talked about very real problems in the relationship: the fact that Victor often yells at Mary on the phone and that he spends more time with his friends than he does with her. (We didn’t talk about Mary’s flaws, but she has some too. grin) We’ve spoken to Victor about these problems in the past, and after this phone call we talked about them again. He now sees marriage to Mary as a reward that will come when he and Mary have each improved sufficiently; he feels committed to the process. He understands that Mary’s parents will now try to make it impossible for them to have sex, will forbid her the freedom that made their few unions possible. (He thinks he’s okay with that. We think there’s a name for people who insist their kids go this route—they’re called grandparents.) At any rate, he’s determined to win fair maiden. His ability to change is as yet untested—I find change pretty tough, myself. And Mary’s ability to change without a behavior plan that includes incentives and positive reinforcement is pretty dubious. But I find my son’s loyalty and resolve deeply moving. Or possibly heartbreaking.

Because it’s unclear whether Mary’s parents will ever change their minds, and there’s not much we can do about it. We can try to expose him to a larger circle of young women and hope he changes his focus. We can cajole and coax and argue and inform. But ultimately we have no power over Julie, none over Mary, none even over Victor.  In the end he will do what he feels he must. Just like a normie.

Originally posted to KosAbility on Wed Jul 04, 2012 at 02:00 PM PDT.

Also republished by Community Spotlight.

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