A frank, humorous exploration of interabled dating, love, and marriage
Ben Mattlin's wife, ML, recalls falling in love with his confidence and sheer determination. On one of their earliest dates, he persuaded her to ride on his lap in his wheelchair on their way home from an Elvis Costello concert. Thirty years later, they still travel like this from time to time, undaunted by the curious stares following them down the street.
But In Sickness and in Health is more than an "inspiring" story of how a man born with spinal muscular atrophy--a congenital and incurable neuromuscular condition--survived childhood, graduated from Harvard, married an able-bodied woman, built a family with two daughters and a cat and a turtle, established a successful career in journalism, and lived happily ever after. As Mattlin considers the many times his relationship has been met with surprise or speculation by outsiders--those who consider his wife a "saint" or him just plain "lucky" for finding love--he issues a challenge to readers: why should the idea of an "interabled" couple be regarded as either tragic or noble?
Through conversations with more than a dozen other couples of varying abilities, ethnic backgrounds, and orientations, Mattlin sets out to understand whether these pairings are as unusual as onlookers seem to think. Reflecting on his own experience he wonders: How do people balance the stresses of personal-care help with the thrill of romance? Is it possible that the very things that appear to be insurmountable obstacles to a successful relationship--the financial burdens, the physical differences, the added element of an especially uncertain future--could be the building blocks of an enviable level of intimacy and communication that other couples could only dream of?
We meet Shane Burcaw, a twenty-three-year-old writer, who offers a glimpse of his first forays into dating with a disability. There's Rachelle Friedman, the "paralyzed bride," as the media refers to her, and her husband, discussing the joys and challenges of a new marriage and a growing family. And Christina Crosby and her partner, Janet Jakobsen, reflect on how Crosby's disabling accident called for them to renegotiate their roles and expectations in their long-term relationship. What emerges is a candid glimpse into the challenges and joys of interabled love--from the first blush of sexual awakening to commitment and marriage and through to widowhood.
I was really excited to read this book. It's relatively rare to find writing about disability from the perspective of people with disabilities, and this book covers a topic I've never read an entire book about: relationships between people with disabilities and their non-disabled partners.
However, this book turned out to be an enigma. Despite the fact that he is a professional journalist, Ben Mattlin is...not a good interviewer. At least, not in this context. There is simply too much of him in the text, by which I mean that even apart from the chapter he dedicates to discussing his own marriage, the entire book is peppered with his reactions to every interview response uttered by his interviewees, and these responses are often skeptical and sometimes downright condescending. He relates just about everything to his own experience, often in an envious or disbelieving way. The most egregious example of this happens in the last chapter, which is an extremely touching portrait of a (non-disabled) woman reflecting on her late husband, who was a prominent disability activist and a quadriplegic. Mattlin becomes so jealous of the man as he's described by his wife that he ultimately dismisses this as "the reminiscences of a widow wearing rose-colored glasses." Yikes. YIKES.
(And it's not like Mattlin lacks for venues in which to discuss his own life and thoughts and feelings! He has also published a memoir.)
Mattlin seems to literally approach each interview with a predisposition to disbelief and challenge everything he's told. When he hears positive things he's (as he himself describes it) "skeptical"; when he hears negative things he seems to assume that his interviewees are insufficiently woke and have internalized ableism. Many of his questions start with "But--," "Don't you--," and so on.
It would probably be an appropriate way to interview, for instance, a Trump White House official. It's a downright bizarre and insensitive way to interview people with disabilities and their partners about their own experiences.
Maybe he's concerned that he's getting sugarcoated responses. Sure, but that's a problem familiar to every beginner journalist. You're supposed to establish trust with your interviewees so that they feel comfortable speaking openly. At first I thought that perhaps he just couldn't find enough people who are sufficiently comfortable with that, but at the end he mentions that he had so many volunteers he had to turn many of them down!
This is one of the best relationship books I've ever read--for anyone, interabled or not. While the book describes numerous couples in which a disability was either there from the beginning or occurred during the relationship, the key to the survival of the relationship seems to be in the commitment of the parties. (It goes without saying, but things change drastically over time: you don't have one marriage so much as you have multiple marriages to the same person, all of which are a bit different. Sometimes the differences are physical and sometimes they're mental, but you have to find peace with them all to keep going.)
My perspective is that I've been married 25 years; in that time, we've had to deal with numerous (usually) invisible disabilities. This leads to handwringing. If I suffer 10-15 debilitating migraines a month but manage to get some things done, is it disabling? If I've dealt with depression and anxiety my entire life and it gets better and worse, but I somehow manage to get through it, is it disabling? My conclusion is yes, because I'm not living the life I could otherwise; there's so much I wish I could do but can't. Is that true of everyone? We all wish we could do more, so...I don't know. Hence the handwringing.
I wish everyone could read this book. I'd learned from interabled couple friends about just how hard it is in the US to manage carers and government benefits, but I don't think I truly had a handle on it until I read In Sickness and In Health.
Mattlin shares the stories of interabled couples that he meets through interviews. Most of the stories have a common theme: that interabled relationships tend to be closer and more dynamic than relationships between able bodied couples. Throughout some of the interviews, he polices the language of how disabled people view their own disabilities and makes some incredibly insensitive statements about young people with disabilities, stating that young people aren’t concerned nowadays with disability activism but only if they’ll ever find someone to have sex with. His interviews also tended to highlight wealthy professionals with disabilities, leaving a void for accounts of the majority of the disabled population that struggles to have accessible living spaces, let alone paid attendants. I don’t believe this book was a fair representation of what interabled romance truly looks like for the majority of us.
Author Mattlin, who has spinal muscular atrophy, takes the reader through the stories of interabled romance: the joys, the trials, the highs and the lows of couples where one is able-bodied and the other is disabled. From raising a family to the perceptions of outsiders to the financial costs to the decisions they make, Mattlin strives to give the reader the stories of these couples that is beyond the "inspiration porn" or other awful tropes the media sometimes uses.
Divided into 3 parts the book looks at various couples of a variety of backgrounds, ethnicities, abilities and orientations. Most of these individuals are just regular people who you might now: your neighbor, a relative, your co-worker, a fellow member of your Meetup group, a classmate, etc. Through a series of essays we get glimpses of each couple and their lives.
I have to say, I'm disappointed. I was looking forward to the book and did find it very informative. This is definitely an area I don't know a lot of about and did learn a lot. And I definitely want to read more of these stories and hope we get more.
But I found the writing really pedestrian. I found the review in 'The Washington Post' very helpful since it reflected some of the concerns I had. The tone and snark wasn't a bother but the constant telling-style was.
I also have to give a bit of a side-eye to the chapter on John and Alison. The John here is John Hockenberry, who was accused by several women of sexual harassment and inappropriate touching. To be fair these allegations came out after the book was written, but the WP reviewer is right that Mattlin does seem a little star-struck (and that is made clear in the text). I'm not saying Mattlin knew and I'm not sure what he/the publisher should (or could) have done but I just felt a bit skeptical with that chapter.
But as I don't share the experiences of these individuals I did appreciate overall what the book was trying to do. Glad I borrowed it from the library and would recommend that method if you're interested.
In his new book Ben Mattlin addresses inter-abled relationships in all their complexity and normalcy, fighting the idea that interabled couples are either tragic or noble. The book consists of fourteen interviews with inter-abled couples, including himself and his wife Mary Lois, which should create quite an objective picture of the "perils and pleasures" of interabled relationships. The text is however crowded with Mattlin’s presence, him thinking, realizing, mentioning, pointing out, suggesting, … in such a scale that you could hardly call the discussed cases interviews. There is also very little space left for the reader to form their own opinion. Which, in my opinion, is a missed opportunity.
This is a topic that comes up frequently enough where I work that I was happy to see a book discussing it. I've worked with people with all the conditions described, but I highly appreciate the way the author makes the medical information understandable and relatable. I learned more about the difference in experience between someone with a congenital disability (e.g. SMA) vs can acquired disability (e.g. SCI), a topic I've only explored a little. I'd be interested to hear a TBI perspective.
The narrative linked the vignettes smoothly, which is rare in this format. I also enjoyed the level and of writing throughout; it's clear the author enjoys writing and is not just writing a book because someone said his experience would make a good story.
I hope this book will find a wide audience among both able-bodied and disabled individuals.
(originally wrote this review in February of 2021 and never published it to Goodreads. The situation in my life has changed due to the untimely passing of my partner, but the review of Ben Mattlins' book is still the same).
I highly recommend this book to anyone out there that has any questions about disability in general. Don’t join Facebook forums, don’t feel judged for asking the wrong questions, just give this a read. I was a caregiver for ten years when I read this book. I met my partner who is disabled, and being with him was what opened my mind up in ways that I never experienced with a decade of caregiving. The raw emotional upfront from the both of us and how it is more than just a physical limitation in his life. When we decided to create a union together, it made me engrained in it too. Not in a pitying “I see you struggle, honey” kind of way, but in a way where he acts innovative and has to cleverly form ways of independence for himself. In a way where you don’t help him just because it is your job, but because you are doing it out of love. I love how Mattlin pointed out that we as able-bodied person get as much out of the relationship as our partner does. I frankly get tired of people assuming I cannot love him wholeheartedly because of his disability. It is exhausting to live under a stigma and make me appear as some kind of hero because I am not, I am simply a woman in love and that is exactly where I want to be. I am in a group on Facebook regarding relationships and disability (which I will keep nameless to protect the group) and it blows my mind how people get on that forum and correct each other’s political wording and nomenclature instead of stay on topic. This is something I loved about Mattlin’s book, he spent very little time on PC and most of the time in the book interviewing other couples and debunking myths that occur with them. In the most subtle of ways, the author expressed his ideas and asked all the right questions to both people in the relationship. He spent a lot of time making sure that both sides were heard and many of them proved that caregiving is nothing but a tiny part of the relationship. That other than the normalcy of that in the routine, that our relationships are no different than anyone else. Ben (can I call him that?) used real-world examples and changed his male and female roles (abled/disabled) for interviews so you can get a perspective from many couples who come from all walks (or rolls as my partner calls it) of life. He also added his own piece of information to many of the interviews and talked about how his experiences differed or were similar. But this piece isn’t all analysis, there are stories in there that will make you smile and laugh.
Reading an advance copy of this book was a privilege. Remember when people only associated with others of their own race, attending school and socializing only with their own “kind”? Mixed relationships were rare. Well, until the law and society mandated that disabled people be permitted access to the outside world, including obtaining an appropriate public education with non-disabled students, they were hidden away, rarely had peers who weren't similarly disabled or had romantic relationships with those without disabling conditions. Ben Mattlin is a financial writer who has spinal muscular atrophy, a condition requiring he use a wheelchair and other adaptive technology, and also requires extra assistance from others. His family acknowledged his special needs while insisting that he live in the mainstream, not the shadows, as chronicled in his book Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity. He attended a “regular” school, beginning in the 1960's, and did marry someone without a disability, with whom he has two children. Partially in response to the curious and inappropriate inquiries of others as to their romantic and sexual life, he has compiled the narratives of several such “interabled couples” [Mattlin's term], starting with himself and his wife. The reader has the opportunity to learn about a variety of such relationships, as Mattlin's skill at exposition isn't limited to his writings on financial matters. Because he's writing as a participant as well as an observer, Mattlin never falls into the trap of seeing a non-disabled person as a "saint", or a disabled person as an "inspiration". Everyone is just living their lives as best they can. He injects just the right amount of humor throughout, and the reader will almost believe s/he's met the subjects and that the writer is a friend, too. This is a book which any interabled couple considering a life together could purchase for both worried families. Too bad it isn't coming out until after Christmas.
I received a copy from Beacon Press in a giveaway. Time to leave my honest review!
Wow, I just put the book down. I loved it! I myself am in a hearing-deaf relationship (I'm the hearing half), which is what drew me to this book about inter-abled romance.
To be honest, I did not know much about SMA before picking up this book, and I have to say, the author does a marvelous job describing it in scientific detail as well as his experience. Each chapter consisted of stories/interview of disabled people (if they were single) or inter-abled couples (one disabled, other able-bodied). Ben also related his own life experiences as a disabled man, being married to a non-disabled woman. I learned a lot!
I love to expand my horizons by reading books from different genres. I must say this is the first book I went into reading for understanding and instead found a new point of interview through the lives of fascinating people. Mr. Mattlin tackles a subject some would find difficult but asks the questions which provide the biggest impact on the readers. I love how the romance of interabled couples is discussed and the emphasis on how both parties in the relationship choose to stay and no one considers themselves heroes. If you are a romantic at heart then read about Ben and ML, Felicia and Juan, War Veteran Jared and wife Alisha, and the many other couples who have their own story to tell. I highly recommend the writing of Mr. Mattlin not only because it explores true romance and love, but also because the voices of the individuals can teach the world to stop looking at people and pitying them because they are different. Delane Reviewer for Coffee Time Romance & More Delane Reviewer for Coffee Time Romance & More Full Review @ Coffee Time Romance & More
I really struggled with this book. I expected stories of inter-abled couples describing their lives, but it was more like Mattlin interviewed couples and then wrote his opinion about them. And I was very turned off by his opinion.
He asked a lot of questions about bathroom stuff. Like, a surprising amount. Like he placed a huge importance on whether or not the spouse helped with bathroom stuff. It's different for everyone, dude!
He also seemed to be constantly looking for reasons to compare his relationship to the people he was interviewing. And he regularly inserted his own judgement into the interior monologue of the book. It was aggressively judgmental and very off-putting.
I originally read this book to look for inspiration on constructing stories on inter-abled couples, but the whole book left a bad taste in my mouth, and I DNF'ed about 3/4 of the way through.
I picked this up mostly based on knowing some interabled (as the author calls them) couples. The author has used a wheelchair most of his life, and his wife does not. He compares their experiences to those of other interabled couples, including topics like romance, kids, travel, personal care, finances, and aging. Some couples have always had one partner with a disability, and for some the disability occurred during their relationship. Although each couple faces their own unique challenges, the author uses this to help prove the point that ALL couples face unique challenges and that we are all more alike than different. Overall I liked it.
Ben Mattlin is a dynamic and witty narrator throughout the book. I appreciated the openness of the various people telling their stories, and the weaving of tales of love with the necessities of care for those with disabilities and how people’s everyday lives/health are managed. I easily and quickly read through the first 2/3 of the book, but by that point it became a bit redundant so getting to the end took more effort. Still, it was a worthwhile read and a good start to learning about interabled relationships.
This book is a series of interviews with couples where one member has a disability. They talked about things such as how the disability effects the relationship as well as how the able-bodied person does or doesn't take on caregiver roles. I thought this was interesting but would have enjoyed seeing a wider variety of disabilities. The majority of the couples featured had a member in a wheelchair.
This is by far the best book I have read about love and relationship while having a disability. Love the term Interabled. Very positive way to describe a relationship between a person with a disability and an able-bodied individual. This book not only talks about interabled relationships but also interracial ones.
I highly recommend this book for all, disabled or not. It does a beautiful job of interpreting the vow of in sickness and in health.
I listened to the audiobook and it was exactly as expected. I decided to listen to it on Audible based on my pre-reading about the author and book summary and my experiences as a teacher. I suspect it was verbally narrated rather than written down because he said he wrote it with no one around and without use of his hands.
It is a collection of conversations that he has had with inter-abled couples like himself with the purpose of humanizing people with disabilities and inter-ability couples
Really nice read, and made me think more about how I interact with my patients. Parts were sometimes judge-y, like saying the husband with two hip replacements and busted shoulders was not really disabled (although he considered himself to be so, and at another part of the book, notes that disability is a mind frame)
When I found this book, I was very excited because I don’t hear much about couples in interabled relationships. Reading stories of other couples and how they’ve navigated their marriages and dating relationships with a disability, was almost comforting and definitely relatable, especially because I’m learning how to navigate this myself.