Interview | Terrell Dougan

Local author Terrell Dougan will be signing at The King’s English Bookshop on Thursday, January 8, at 7 p.m., with her memoir That Went Well.

BETSY BURTON: You recreate your childhood so evocatively—the funny moments, the guilty ones, the heartbreaking ones. And all those poignant details allow you to reflect your growing awareness of your sister’s reality without wallowing in self-pity—on your behalf or hers. Since I know you’re a professional columnist I wonder, was this your usual breezy journalistic style or was it intentional—a way of making the reader see Irene as human, not just a bundle of need? Or both?

TERRELL DOUGAN: Both, I imagine, if I understand what you mean.  I’ve read this question five times now, and I am pretty clear that my attitude – and in fact, the attitudes we all adopt – come from our parents.  Irene and I had parents who treated us as individuals, and they really respected our needs.  Here’s an example: my mother learned early on not to have Irene’s clothes monogrammed.  I myself thought a shirt with my initials on it was first class.  Irene took her first monogrammed shirt and threw it on the floor, saying, “I hate nitials!”  So she never had to wear ‘nitials!  Looking back on it, I realize how amazing it was that they tried to respect what it was Irene wanted in life, just as they did with me.  As to breezy attitude, you know, when you live with someone who is “not normal” in most people’s eyes, it becomes totally normal in your eyes.  I would be bopping along in life and happy as could be, and now and then someone would say, “Oh, your sister is mentally retarded!  I had no idea! How very tragic for you!”  So I would then drop my head and shoulders and say, “Oh yes…” and try to look tragic for them, sort of in support of their compassion, and I would say thank you, but the truth was, it was always a complete surprise to me that anyone thought our lives were tragic.  My parents certainly didn’t.

BB: Despite your busy life, you have been involved in every program and legal maneuver in support of people with special needs from ARC to the Columbus Community Center to Project Turn. Yet, ironically, every one of those efforts was anathema to Irene. You’ve listened to the social workers at times, and to your own instincts as often. Can you talk about the process by which you finally came to realize that it was Irene to whom you needed to listen?

TD: Dad and I did what we could to get these programs in place, thinking they’d be good for everyone with a developmental disability.  Once again, everyone has individual needs, and not everyone fits a program. Irene actually spent over 18 years at Columbus, and a few years in the other sheltered workshops around town as well.  While there, she spent more than a little time alone in the time-out room because her tantrums were so out of control.  Part of this is due to her brain damage, part to wanting her own way at all times, as three-year-olds do.  This was in the days before the miracle drugs that even these folks out.  Nowadays, professionals are coming to believe even more in smaller facilities, with few or no time-outs, and if they are time-outs, they should be of short duration.  I just returned from the Arc of the United States’ convention, and a whole plenary session was devoted to the ways we who mean well still abuse the human rights of individuals, even in community programs, by treating them in ways that diminish them.  I came back realizing that fairly often I discuss Irene’s program with her staff as if she isn’t sitting right there in the room, and we don’t include her.  That’s going to stop. So there’s a national consciousness being raised about this that’s wonderful.

BB: Irene has a magnet on her door that says, “Normal People Worry Me.” Has your sister given you a new way of judging what’s “normal?

TD: Yup.  We have a new magnet I found that we both like better, and it’s above the old one. It says, “The only normal people are the ones you don’t know too well.”

BB: Your book is in some ways a chronicle of homes you created for Irene—but also of homes you created for yourself. Despite your devotion to your sister, the work you put into creating a good life for her, you managed to create what sounds like a wonderful life for yourself. Did Irene in fact help to make that possible? And was one of the reasons for writing this book a desire to make people understand the complexity, the good and the bad, of life with a so-called special needs person?

TD: I have had a magical, fairy tale life, and have no idea what I did in the last life to deserve it. A lot of it is due to my husband, a maddeningly mentally healthy human being who has boundaries, never holds grudges, has not a pessimistic bone in his body, and insists on our own life together.  I love to think the worst will happen, I adore holding grudges and nursing them along, and I am an impulsive, loose cannon who hardly ever thinks before acting.  This man, I now realize after 49 years, has centered me and kept me sane, and is my Rock of Gibraltar. Irene has made me half compassionate and responsible (Lord, I have to be if I run her program), and half crazed and loony. The reason for writing this book was to get a lot of it off my chest and also, in some immortal words of this year, give a little shout-out and a wink to all those who have this in their family.  The shout-out is, oh honey, I’m so sorry.  The wink is, but ain’t it been kinda fun in a lotta ways that outsiders won’t understand?

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