By Ben Mattlin
In early March, an angry, dysfunctional couple spewed their venom on the Dr. Phil show. That’s not unusual. What was, however, was that the young man—Bailey—was quadriplegic and the young woman—Harley—was not. She was the principal provider of his personal care.
“You can be his caregiver or you can be his lover. You can’t be both,” declared the host, whose full name is Phillip Calvin McGraw and who holds a PhD in clinical psychology from the University of North Texas but is not actually a medical doctor. “This won’t work,” he concluded. “One hundred out of one hundred times, this won’t work.”
The Internet reacted (#100OutOf100). People like me were offended. It was a patently absurd generalization. And I know that for a fact, because I wrote the book on it.
In In Sickness and In Health, I interviewed more than a dozen interabled couples. Many of them used outside help or didn’t need much personal-care assistance at all, but in some cases, one partner provided for the other one hundred percent—for decades. So much for this won’t work.
I admit I questioned them about this. The conventional wisdom says that having a lover provide all the help is a recipe for disaster. But these couples insisted that it works for them. In fact, they said it brings them a higher, deeper degree of closeness, understanding, and intimacy than many other couples enjoy.
Sometimes couples have no choice. They can’t afford to hire aides, and there is nobody else to help. Yet they make it work. For others, though, it’s the most desirable option. They choose it.
As a rule, I don’t watch Dr. Phil. But I watched this episode. I’d heard about it in advance from a friend—a couple whom I profiled in my book, actually. Hannah and Shane. They had been invited to be part of the program, but when they heard what it was about, they refused. Indeed, they were so offended they posted a vlog about it.
“The girl was dealing with caregiver burnout, having trouble taking care for him all the time. And he was dealing with mental health issues and sadness and guilt, and apparently was taking out his anger on her. So, it was a really toxic relationship. [The producer] wanted us to give advice to them about how we make it work,” Hannah and Shane explained.
They decided that it sounded as if the couple in question was dealing with “way more than just [being in] an interabled relationship. Being abusive and having those issues has nothing to do with having a disability.”
Hear, hear! It’s too easy to blame disability for all of one’s difficulties. Disability is a terrific scapegoat.
Hannah and Shane knew they weren’t qualified to give advice to the TV couple. They also understood that Dr. Phil’s guests are frequently “exploited and sensationalized [to make] drama for television,” they said.
Most of all, they were concerned about the program’s message vis-à-vis disability.
They made the right choice, I think, though I’d be awfully tempted to confront Dr. Phil head-on.
My wife, ML, and I have often been tempted to get rid of all hired assistants. They never do as good a job as she can do. We often find ourselves working around their schedules and limitations, which is unpleasant and invasive. It would be nice to preserve our privacy.
We even did it once. When our daughters were small, we figured that the only way ML could stay home with the kids was if we fired my helpers. People warned us that it was a mistake, but we knew it would only be temporary, till the kids were in school.
Was it tough? You bet! ML had to do everything around the house and was constantly pulled between the kids’ demands and mine (let alone her own). I suffered too. I had always had outside help. Without it, I couldn’t always get my needs met. I lost a great deal of my sense of autonomy.
ML and I did fight a lot during that time. She became increasingly depressed.
After two or three years, however, I insisted that we hire someone part-time to help me. I had to ask my father for extra financial support. It felt like a good compromise.
Once the kids were safely in preschool, she took a part-time job that was close to home. I increased my attendant’s hours. As the kids spent more time in school, ML spent more time at work. We survived the period of no-outside-help, of one hundred percent interdependency, and came out feeling closer and happier and stronger than ever.
So I agree that having one partner provide one hundred percent of the custodial care for the other may not be ideal. It isn’t easy. It’s an arrangement that probably shouldn’t be entered into without a lot of communication and understanding—without some parameters, so it doesn’t feel like an endless trap. But it’s not necessarily a death sentence.
Essayist Melissa Blake wrote in the blog Rooted in Rights that the show contained “more ableist tropes than should ever be allowed in 2019 . . . Why are we still buying into the ‘burden’ narrative when it comes to people with disabilities?”
I agree. As a society, we should’ve learned by now that there are many flavors and colors and shapes of love. As long as no one’s getting hurt or abused, there are no hard and fast rules. It’s wrong to try to limit the bonds of affection, the types of love that we deem acceptable.
Dr. Phil should know that. He should know that sometimes the worst obstacles that troubled couples face are the burdens of prejudice and smallmindedness. Saying that only couples that fit a certain model—a Dr. Phil model—are acceptable is nothing short of bigotry. It’s like saying that interracial couples are doomed because, well, they might not share certain traditions or the kids won’t know which tribe they belong to. These are arguments that used to be made and have by now been debunked.
I only hope that the notion of interabled romance is becoming better understood and more accepted, despite trash TV like this. Shame on Dr. Phil for trying to set the clock backward.
About the Author
Ben Mattlin is the author of Miracle Boy Grows Up and In Sickness and In Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance, and a frequent contributor to Financial Advisor magazine. His work has appeared in the New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, and Vox, and on NPR. He lives in Los Angeles, California. Follow him on Twitter at @benmattlin and visit his website.