Our son, Jonathan, who is now 26 years old, has, somewhat precariously, embarked on his journey of romance. This is a new arena for me, coming from a very proscriptive path of coupling practiced in the Bruderhof. Sometimes I wish Todd were here to be a sounding board – to continue his listener job – for Jonathan. He does have my partner’s ear if so inclined. But mostly, he’s on his own. Once in a while, Jonathan will ask about how his father felt about women, love, and partnership.
Oh, don’t get him going again, I laugh to myself! This is what his whole memoir would have been about if Deborah hadn’t prodded him to expand his scope. Yes, Todd did kind of obsess about being able to have intimate, sexual relationships. And he also sometimes obsessed about me leaving him, especially when life got stressful – and it all seemed to center around needing to be loved and to love.
I have pondered why Todd was like this for many years. I thought, maybe his early beginnings made him fearful of being abandoned. Maybe his determination was so strong to prove his manhood because of the people around him who doubted it and his ability to give anything to a woman. I was inclined to reinforce the proving part – because inevitably when we were out in public together, some clueless soul would give some oblique reference to Todd as my son, my brother, or someone for whom I did caregiving. It was never an automatic assumption that we could be lovers, intimate partners, parents of children. People had to be educated. Once, someone asked my sister-in-law, Sue, if I did everything for Todd. She laughed and said, “Yes, Everything!” It so helped to have supportive family and friends!
That was in public. In the privacy of our own space, I viewed our relationship as fitting the mold of most relationships in meeting both our needs – the need to communicate, the need to assert autonomy, the need to be appreciated and appreciate, the need to be loved and to give love. We both thrived from being together. We had our patterns of dependency and co-dependency, our stretches of discomfort where we lashed out at each other. But we were both determined to make it work – and gave what we had in full measure, both good and bad. Still, it’s been hard to explain the normalcy of our relationship with other people, who view our life through other lenses. It has seemed like we were such an odd couple.
Then a few weeks ago, my brother-in-law, Benoy, called me up to say I had to listen to an NPR show about a man who was disabled who was married and had kids. That will always pique my curiosity. I was too late for the show and got online, where I read about Ben Mattlin, who had just got a book published titled, “In Sickness and in Health: Love, disability, and a quest to understand the perils and pleasures of Interabled Romance.” Interabled Romance! That’s what it was – just like interracial romance, international, inter-whatever! And, as I knew from being in the “disability” world, it’s not an uncommon thing , but now someone has done extensive research and written about it!
I laughed and cried through the one or two days it took to read through the book, which I could hardly lay down. Mr. Mattlin not only writes about his own romance, marriage, rearing children, and becoming old together, but also has interviewed fourteen other couples. I could have been reading about Todd and me in so many of these couples – their relationship with each other, their families, their friends, in public, with their attendants, with the health and finance systems, and with the world. I stuck so many markers in this book, to re-read the passages that Todd and I would have been discussing and re-living…
About being in an interabled relationship and how people viewed us:
“Frankly, it’s often bugged me that people don’t see what I do for [my wife]” (p 54. I can see Todd nodding his head vehemently at this one).
“A lot of people feel that, with an interabled couple, the abled-bodied person is some kind of hero just because he’s with you.”…”It doesn’t take a hero to be with somebody”….”that’s basically saying it takes an extraordinary person to deal with someone like me, when really it’s just that we’re both in love.” (p 55)
About the kind of people we are:
“…the difference between do-gooders and extroverts, between those who need to feel needed and important and be incessantly thanked, and those who are simply socially aware and engaged. The former may never fully respect disabled people as equals, while the latter treats them as no different from anybody else.” (p 207)
The hard balance of providing care, attendant care and sense of self-reliance/privacy:
“Nevertheless, having a lover be one’s caregiver isn’t exactly ideal either. It can take a toll on the able-bodied partner and rob the disabled person of a feeling of autonomy.” (p 41) “It’s a constant balancing act…privacy versus making sure both partners’ physical and emotional needs are met.” (p 42)
Fussing about the inadequacies of “the system”:
“…the boundaries and stipulations [of Medicaid rules] are woefully out of date. They make independence conditional.” (p 40)
Remembering the difficult times:
“It’s hard when two people need attention or sympathy at once and neither one has the energy to accomplish anything.” (This about a couple with acquired disabilities, p 165)
“To the outsider their relationship might appear to bend under a never-ending strain, but to them, when it works, there’s a kind of rhythmic hum, a harmony…a blending of two lives.” (p 181)
And reflecting how disability affected our lives, but how we would not have it any different:
“It strikes me how few people…[wish for change in their situation]..’to be cured’ or even ‘to have never become disabled in the first place.’ It’s as if their disability experiences have become part of who they are now. Making life easier is always the wish, but not so much through eliminating the diagnosis as shoring up the support systems.”( p 74)