As a gay kid growing up in Upstate New York during the 60s and 70s, I had to hide -- from everyone, including myself. It wasn’t until I came to New York City in the late 80’s that I was finally able to admit I was gay. I was fortunate to have the support of family and friends. In fact, my younger brother Marty is also gay. Aimee, his twin, is straight. She and Marty, like my mother, both have degrees in special education. Our youngest brother, David, is severely disabled and was born with multiple birth defects. He has always needed us to support and advocate for him, and that has made us stronger.
David’s disabilities and our advocacy on his behalf form the axis around which my family turns. His is the birthday we all worry over; his are the holiday gifts we fuss to create. We make certain he gets many, because it frustrates him to watch other people open things. Then again, he never seems to care much about what’s in the packages; tearing them open is the fun part. And we have always loved watching him go at it with abandon. So we fuss.
Mom and Dad worked hard to create a positive environment for David. Fussing over him is what the holidays are about. I’ll never not have the holiday spirit while David’s in the world. I can’t talk about caring for him always being a blessing necessarily, because it’s not, given some of the troubles my family has had in creating the kind of environment David needs. But I do know that our advocacy on David’s behalf has fortified us all.
We were all still kids when David entered his first group home. My parents always encouraged the people working around and for him to grant him some control of his environment. His toothbrush, his underwear, his bathrobe, his Reeboks, his suave slippers are special to him because they’re his. Either at our family’s home or his group home, they make up his world.
Advocating for David was always second nature to me and my siblings and, in some ways, it still is. David uses one- or two-word phrases to ask for what he wants. He can’t tell us how he feels, so he usually focuses on simple needs. He might point to the refrigerator and say “Diet Coke” and mean, “Hey, is it okay for me to get a Diet Coke, now?” The caffeine in some drinks makes David upset or anxious, so we usually get the decaffeinated kind so he can have as much as he likes.
As little kids, we always knew how David was going to feel about a situation before he did. We were careful to redirect him when he went through phases where he was terrified of Santa Claus and the Easter Bunny. As kids at the mall, we’d spot the costumed character of the season and turn David toward something else we knew he’d love: a soft-drink stand, or anything related to sports or music.
Music is a force for good in David’s life. He’s got his own headset, programmed with his favorite tunes that he wears around the house. He loves Billy Joel, the Carpenters, John Denver, all the “Star Wars” music and Donna Summer (my influence). He loves TV shows with music and lots of action. Sports, too. He loves “Hee-Haw!” and, with modern technology, we’ve been able to get him a great collection of his favorite shows: “The Brady Bunch,” “The Partridge Family,” and all versions of “Star Trek.” The sounds of these shows and songs make David feel safe and cared for, but most importantly, they allow him agency: he can request his favorite things and have some control over his world.
When my parents passed away, David was relocated to a home farther upstate, closer to Aimee. He spends birthdays and holidays at her house with his adoring nieces and nephew. It’s a good life—his family makes certain of that, as do the wonderful folks in the world of special education and housing in New York State.
“We all have the capability to create our environment so that we feel either safe or satisfied, or just not bored,” Aimee told me on the phone the other day. “David doesn’t have that capability, that luxury. He needs our help.” Aimee, Marty and I are our brother’s keepers. We keep his environment healthy and whole. But then, David is our keeper, too. For all the struggles the family has endured, advocating for David has made us closer, wiser, tougher. Wanting David to have the best life possible, the best environment possible, has not only helped us pursue our personal goals, but also made us capable of advocating for our own best worlds, lives, and environments.