What The LGBTQ Community Taught Me About Parenting My Son With Down Syndrome

For as much as we strive to eliminate bias against our children, we parents also need to prepare our kids for the reality of a world that will not always be kind. 

My 8-year-old son Bobby has Down syndrome. I spend a lot of time advocating for him to have the same sorts of opportunities most parents want for their children—a good education, a job, adult relationships with friends and/or a significant other. One of my most difficult jobs is to teach him how to live a fulfilling life in a world where he is surrounded by prejudice toward his disability. For as much as we strive to eliminate bias against our children, we parents also need to prepare our kids for the reality of a world that will not always be kind.

I can relate. As a lesbian I had a long journey from a closeted youth to a middle age of living openly and happily with my partner and son. I grew up in a home where homosexuality was so taboo it was never even discussed. I didn’t begin to come to terms with my sexual identity until I moved away and created space to make up my own mind about who I am.

As a parent, my goal is to not overwhelm Bobby’s self-discovery in this way. I relate to him in that he and I are both part of a marginalized group, but of course I don’t really know what life with intellectual/developmental disabilities (I/DD) is like. In the Down syndrome community, many parents impress upon their children that they are “more alike than different” but I think this is a limiting definition. As a lesbian, I don’t have a desire to be like heterosexual people. I want to be my best self in whatever form that takes.

Likewise, I want Bobby to have room to define his own path. I don’t impose any expectation on the extent to which he cares about or is capable of conforming. I try not to follow any preconceived set of rules about what life with I/DD should look like, but instead focus on clearing Bobby’s path of obstacles that limit his choices.

The history of persons with I/DD is one of segregation. Lifelong institutionalization was common even 50 years ago. Children have long been educated in segregated schools or classrooms. Organizations like the Special Olympics came about because people with I/DD did not have access to other recreation opportunities. Even now, every spring brings a wave of special needs proms, events that are often promoted as alternatives to high school dances, as if people with I/DD don’t belong at the same function as non-disabled peers.

Choice for Bobby means eliminating barriers that reduce his participation in society.

As I learn the stories of self-advocates (adults with I/DD) who live and work in our broader society, I feel hopeful that the boundaries they are pushing will create new opportunities for Bobby.

Parents and individuals with I/DD are largely unified around the idea that inclusive activities must be an option for people with disability. However, I worry that this emphasis on interaction with non-disabled peers has the unintended consequence of devaluing relationships among peers with I/DD, particularly as it relates to all-I/DD events or environments.

A few years ago, I volunteered with a local organization that holds a biennial conference for adults with Down syndrome. I learned that some adults refuse to attend the conference because they do not want to spend time with peers with I/DD.

At a parent education event, I heard a behavioral specialist speak about the relatively high prevalence of depression in young adults with Down syndrome. As their non-disabled peers go to college or move away from home, these adults may become increasingly isolated. Some choose this loneliness over interaction with peers with I/DD.

By no means is this a universal situation. Many people with I/DD have friendships within the community. But the stories of those who reject their peers trouble me because I know how painful it can be to hold oneself separate from those who share your identity.

There is a difference between refusing to participate in Special Olympics because it’s a segregated event versus refusing to participate because other people with I/DD are there. The former is a political statement; the latter is self-hating. Too often, we parents act as though the distinction doesn’t matter and contribute to the stigmatization of I/DD events even though the experience of other marginalized groups is that communities based on shared identities are an important component of a balanced life.

Marginalized groups need safe spaces where they can temporarily shed the role of a minority trying to adapt to the establishment. LGBTQ congregate in gay bars and neighborhoods where we can freely express our identity. Feminists support the idea of all-women spaces where patriarchal norms are ignored and female voices are amplified.

Already, I see the difference with Bobby. In the last school year, he developed lovely friendships with non-disabled students. They wrote him end-of-year letters testifying that he is a funny and kind boy. But I also saw him struggle to interact according to their expectations. I saw the friends take on the role of caregiver instead of peer.

However, with his friends with I/DD, there is an easiness in the interaction that just isn’t present elsewhere. He and his two best friends laugh and play together with no tension over the fact that two of the boys are largely nonverbal. They effortlessly understand each other.

I want Bobby to be able to navigate social interactions with non-disabled peers, but I also want him to have those times of easy acceptance. It is emotionally exhausting to constantly conform to normative behavior that is at odds with your natural self. “More alike than different” can come with a heavy price. Being a lesbian has taught me that this is true even in environments free of outward prejudice or hate.

Toward this goal, the I/DD community should take back events like the special needs prom. We need to trounce marketers and media folks who condescendingly portray a special needs prom as a charity event for a group of misfits. There is no reason to justify the existence of a simple dance in this way. These proms can instead be a chance for people with a shared identity to celebrate their community. If we control the perception as such, the event loses the power to stigmatize.

Similarly, Special Olympics cannot be the only recreational opportunity for people with I/DD, but sport as a unifying community event has a long history—from the original Greek Olympics to modern day Gay Games to coworkers who play on the same softball team. The Special Olympics could become a variation of these sorts of events—not segregation, but voluntary time spent with people who have a shared identity. Some in the community will participate; some will explore other options. All choices should be respected.

The reclaiming won’t be easy. Many of these events rely on sponsors who buy into the narrative that people with I/DD are not capable of broader social participation and who want to hear the contrived stories of inspiration as testimony to their good deed. But as with other social movements, the reclaiming process moves power from the establishment into the hands of the marginalized, and as such is a strategically necessary component of larger social change.

At the individual level, the reclaiming opens up an avenue of choosing to live, work, or play with other people with I/DD without stigma. More choices for Bobby and all the sons and daughters out there. Because for as much as we cannot tolerate segregation, inclusion should not lead to people with I/DD feeling stigmatized about spending time in their own community.

Anne Penniston Grunsted writes about parenting, disability, and family life from her perspective as a lesbian mama. She has been published in The Washington Post, Brain, Child Magazine, Mamamia, and won the 2014 Nonfiction prize from Beecher’s Magazine. She lives in Chicago with her partner and son.

Photo provided by the author.

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