My first job after high school was working in group homes with developmentally disabled men. It was my summer job through college and I also picked up shifts during the holidays when the regular staff wanted time off. Usually in my home town (but also including a few stints in St. Paul), the position was called Residential Counselor, or something like that, and I was one of a number of staff people who helped men with a variety of abilities and disabilities live their lives. If I had the morning shift, I’d help them wake up, get ready for work, take their meds, eat breakfast, and get them on their vans to go to a sheltered workshop in town where they earned money doing piece work. In the afternoons and evenings, I’d welcome them home, take them on errands like banking or grocery shopping, make dinner, do recreational things like go to movies or out to eat, pass meds, and assist with personal tasks like bathing, all to be done again the next day. And the next. Day after day. Week after week. Year after year.
I usually just called them “the guys,” in a pointed way, to make them more cool and mature than how people in town usually referred to them, as “the boys.” The town embraced these group homes and the people who lived in them as a part of our protective, somewhat insular small-town society. It was—and is—something that can make a small town so comfortable, the probability that nobody is anonymous, particularly the men of these homes. Waves and hugs were common while walking around town or the grocery store. Topics of conversation often had to do with going to “camp,” which was a resort in Wisconsin where the guys would go each summer for a week; going home, which would happen with varying frequency depending on how involved the families were with the guys; and going for “pop,” which was a common currency as a relished treat, especially during the summer.
Our activities and therapies were usually scripted and prescribed by someone with a degree in the field; but there was also plenty of free time. My formal training included First Aid, CPR, med passing, and physical restraints. We were informally trained in things like how to cook for a large number of people, how to assist men with taking baths and dressing, how to take a number of men to stores and what to do if there were problems. We certainly ran into snags at times, but the snags were usually predictable. It was a predictable pattern of life for a somewhat unpredictable group of people. They were as unpredictable as any of us are, more or less, but definitely had less personal ability or agency to live their lives on their own terms, which could also be a source of tension. Their terms were largely dictated for them and we were the gatekeepers to their lives, for the most part. It was a good system, a safe system. But, like all systems, it’s only as strong as the people making it work. Its limits were because of our limits, whether personal or institutional.
This writing is a contrast to the piece I wrote in our last issue about the limitlessness of this community in terms of graduates looking toward their futures and couples looking toward having children in Minnesota’s post-marriage society. This piece is all about being limited. And, I’m not talking about a euphemism for being developmentally disabled (“He’s limited, you know, a little slow”), but in terms of the limits placed on people who are developmentally disabled, both formally and casually.
Looking at the routines of each day, week, month, and year, what’s missing? Love. In the daily schedules of each man in each home, there were few opportunities for things like love. Every month or so, there was a dance or mixer with other people from other homes and towns but, generally, the guys in the group homes socialized with each other. A few of them had girlfriends they’d see every once in a while, when it was scripted into the schedule by the staff of the two homes where each resident lived, and worked into the schedule. Such a date might be going to the Dairy Queen for some ice cream, and it would include one of the staff members being nearby as a chaperone, unless the resident was more independent.
What we didn’t have was training about relationships and love between the residents. We weren’t given official ways of dealing with one of them having a crush—same-sex or otherwise—other than relying on our own senses or those of our manager. We certainly didn’t have a Rainbow Support Group for any of the guys like Wingspan does (pages 54-55), despite the fact that, statistically speaking, a number of them were—and are—likely gay (one of whom routinely and genuinely said that he loves guys [in more than an “I love everyone” kind of way]). Furthermore, in a conservative hometown like mine, such a training could not have happened back in 1995. It might not be “able” to happen now.
What I’ve described isn’t the experience of every developmentally disabled person, but it’s likely the life of many. Some may not live in group homes, but live independently. Others might still live with family, accessing their social opportunities through that family system or through programs such as those provided by places like Wingspan, but be subject to limits beyond their control.
I treasure these men—and my time with these men—so much; I learned so much from them, both specifically and as a cultural group of their own. I am hopeful that they are now allowed to seek or have relationships on their own terms, rather than the terms of their programs or Residential Counselors. I still see them when I go home; I get waves and hugs and talk about camp and pop. A couple still call me what sounds like “Underwear” because that’s what “Andrea” turned into way back then, thanks to enunciation styles and rich senses of humor. I love them and I hope they get to love. And I hope that they get to define what their love looks like, rather than have it programmed into their schedules or encouraged or discouraged by staff who have their own limitations. I hope that there is a Rainbow Support Group in their area, or one in their future.
As one of the guys always said when he was explaining his developmental disability (whether with pride or remorse), he was “born this way.” He was years before Lady Gaga, who touted the same sentiment in support of rights for the GLBT community, and he was just as entitled to the sentiment for his own rights to exist, to love, and to be loved.