I have been following Shane Burcaw on Instagram for a few years and was excited to see he has a new book out – Strangers Assume My Girlfriend is my Nurse. I flew through the book on the plane (excuse the pun!) – it was so easily readable, and relateable. I am loving #OwnVoices Books!
Shane has a blog, he and his fiancé Hannah Aylward have a YouTube channel – Squirmy and Grubs – and their respective Instagram accounts are wonderful (and have huge followings). This book is a wonderful extension of Shane’s online presence. Strangers Assume My Girlfriend is My Nurse is Shane’s third book.
Shane is in his 20s, he lives with a degenerative disease that results in a visible difference. He addresses this up front,
“First of all, I have a disease. The disease, which I was born with, is called spinal muscular atrophy. It causes my muscles to waste away as I get older, so I was never able to walk or even crawl. I’ve used a fancy schmancy electric wheelchair since the age of two, and as of writing this at the age of twenty-five, I’m starting to lose more important muscle function, like my abilities to breathe and swallow and speak. Fun, right?”
He writes about his body and the barriers he experiences in a self deprecating way, but never with internalised ableism. The book is very, very funny. Shane is a great writer – thoughtful and able to articulate the universal feelings of being disabled well.
Shane’s impairment as well as his access and care needs are vastly different to mine, but I related so much to his experiences of low expectations, curiosity and sheer rudeness of others. He too has experienced exclusion and bullying, prayers from strangers, and the assumption that his life is terrible because of his visible difference.
He uses humour to counter this – he developed this strategy in the playground when kids asked him about his body and his wheelchair.
“These questions cut deep, not because I was ashamed of the chair, but because I was aware that other kids viewed me and my chair as different. I didn’t want to be different. The different kids didn’t get invited to sleepovers. The different kids played alone on the playground. My sense of humor was thus born out of necessity, as a way to overcome that first social barrier created by my wheelchair.”
I really resonated with this – I had to develop confidence and humour to allay people’s fears and to show them I was more than my appearance from an early age.
The other thing I found really interesting was his struggle with his sense of identity as a disabled person (but never shame) and as disabled writer. There was discomfort yet power from meeting others with Spinal Muscular Atrophy when he was in his 20s – they taught him to become less defined by his disease. I really admired this admission and growth, and it’s something I also grapple with too. How do I just be Carly when so much of my identity and work is linked to ichthyosis and disability?
Shane does a great job of explaining systemic barriers he and other disabled people experience – like the airline industry’s inability to accomodate disabled passengers well, the ableist concept that disability is a worse fare than death, and of course, the low expectations from services such as restaurants (he still gets children’s menus!). He writes about the issue with inspiration porn, but without naming the term Stella Young coined. He gives examples like strangers being inspired by his relationship with Hannah, and strangers buying him gifts. In the past, Shane has been criticised by a disability activist for perpetuating inspiration porn, but I feel he’s grown in this aspect in this book, and is now firmly against it. This really demonstrates that disability activists should be given the chance to learn and grow.
He also writes a lot about “making it work” – with adaptive technology like Alexa, as well as Hannah modifying a child’s booster seat for airline travel, introducing him to soft stretch skinny jeans from the girls section of H&M for ultimate comfort, and his Dad teaching himself how to take Shane’s wheelchair apart and put it back together should an airline ever dismantle his wheelchair again.
Shane has an incredibly supportive family and partner, but he has been troubled by the burden complex for years (something I was often worried about in the workplace).
“People are programmed to feel bad for me, knowing nothing about the quality of my life. At times, the outside perception that my life is negative and sad became so powerful that I internalized it and developed harmful beliefs that I was a burden to even the people who love me most. It was largely my responsibility to shake off that idea and prove my worth, to show people that I am just as funny, intelligent, sexy, hardworking, adventurous, and successful as anyone else.”
Shane also writes in great detail about sex – both with partners and masturbation.. He shouldnt have to, but but he is incredibly generous with explaining the mechanics of sex in a factual and humourous way. The beauty of Shane’s writing, social media posts and videos addressing questions about sex is that he does it on his own terms, with humour, and often boldly hinting at how inappropriate this level of intrusion is.
He met Hannah, now his fiancé, in 2016, after she watched a documentary about him online. She got in touch via email, and they bonded straight away. Their love story is just wonderful. He details their adventures through the book – navigating a new relationship and people’s ableism, cute dates and finding his own manly independence and travelling the country as a couple.
Hannah is incredible as a caregiver. Not in a pitying way, though. Through recalling anecdotes, Shane shows Hannah as practical, loving, and always willing. She is his caregiver, but also his lover. He continually describes the closeness that has been created by Hannah caring for him. In a recent video, the pair addressed the offensive claim made by Dr Phil that “100 out of 100” couples in interabled relationships (as Shane describes his) will fail, because the non disabled partner can only be the caregiver or the lover – not both. Hannah is very much both. Their relationship is stunning. They are #RelationshipGoals.
He describes their love – a lot of which is linked to caregiving:
“Here I was in the midst of a full-on catastrophe, ravaged by what was about to be an atomic finale. I was cold and sweating and scared and naked and vulnerable, and yet, I felt no semblance of the embarrassment that you might expect. In fact, as she lowered me onto the toilet, and the guttural splashes filled the room with sounds and smells, she began to laugh and rub my back while keeping me steady atop the toilet. Love is a difficult feeling to describe, but I can assure you it feels something like that moment, when the whole crazy mess of it reduced me to shaking laughter in her arms.”
Shane worried that Hannah wouldn’t be comfortable with intimate and time consuming aspects of caregiving; he worried he would be a burden. But she always reassured him that he wasn’t, and their relationship felt so very easy and comfortable from the start.There is a chapter in the book where Shane experiences what it might feel like for Hannah to be his caregiver – and he writes,
“Suddenly, it seemed so obvious to me what she had been telling me all along. When you love someone with your whole heart, there’s nothing you won’t do to keep them safe and comfortable. It’s not a sacrifice and it’s not a burden; it’s a natural instinct.”
He explores the prospect of a cure, or a drug that has the power to halt the progression of SMA – but not guaranteed to provide the same outcome in all patients, and this leads to an introspection on how others see him – if even those close to him were excited for a cure for him, did they faintly harbour ableism too. Shane articulates my thoughts and feelings on this so very well:
“It wasn’t until I began receiving the injections almost a year later that I finally pinpointed why I felt so ambivalent about the drug. The potential to be “cured” of my disease had the unintended effect of causing everyone around me to see anything less than a complete cure as an unfortunate failure, which totally opposed the healthy embrace of my disease that I was working so hard to adopt.”
Strangers Assume My Girlfriend is My Nurse is a collection of essays rather than a memoir. Sometimes they end abruptly, other times they read like a holiday diary. I feel this keeps in style with Shane being a blogger, but it might be off-putting for readers who prefer a more consistent flow.
I really enjoyed this book. It’s activism, but not angry activism. It makes learning about ableism accessible to non disabled people. It models great behaviour. I laughed a lot, admired the writing, and empathised with Shane’s exhaustion at others’ reactions to his body. I think it is especially a great book for young Disabled men to see themselves and know what’s possible for them (travel, a career, romance, pride in self), and also for parents of disabled kids and adults. Thank you, Shane – and Hannah too.
Shane has also written Laughing at My Nightmare (also the name of his not for profit company/) and a picture book called Not So Different: What You Really Want to Ask About Having a Disability.
(I acknowledge this is the second post in a row that’s a book review. It’s so important to me to read books by disabled people, and to review them when I can.)