Five years have passed since Romy Shiller wrote "You Never Know", seven since the operation which changed her life. I met Dr Shiller via her first book and we've since become internet friends. A number of people wanted to know, "what happens next?" and she obliges. In "Who Knew", we meet a deeper, more mature Romy who continues her life as a writer, academic and pop culture critic and brings these skills to reflect on her own situation. This is a Romy wanting to be seen, and not afraid to challenge us.
It's an uplifting book. Romy says "In many ways I feel lucky". This dichotomy and honesty make the book fascinating. How would you or I cope in such circumstance? Here is insight. Romy's ideas stimulate me, it's not a mere "life story", she draws on many interesting concepts.
Romy is surprised when people find her inspirational, but there's no denying that element to her work. In this respect, it's perhaps we, the able-bodied who are impoverished. "Who Knew" hit me in exactly the right place when I was feeling down about my own circumstances and needed a friend. I don't pretend my life has the challenges Romy's does, but her thoughts helped me think about my own. Mine are mostly mental and emotional, not physical, though even that distinction is problematic. Coincidentally, I was reading a book on "embodiment" and "personhood" as discovered through robot AI research, which had tie-ins with Romy's thinking. Her reminder to fight to overcome our so-called limitations, to celebrate them and to see the glass half full was warmly welcome. Celebrating my difference is something I'm working on.
Dr Shiller enjoys her "different" status, but writes "it is hurtful that my diminished physicality becomes a sign to many that I am mentally impaired. There is a huge gap in what people might expect and the reality of my mind." Perhaps it's through my childhood friend David who "walked funny", or through a wheelchair-using friend who couldn't talk, but I never assume mental deficiency in anyone I meet. I wish others would learn to do the same. Romy has earned a PhD, written three books since her operation and numerous articles and academic works, which she's listed at the end of this book. This is part of the "see me" of the new Romy.
When you have "a belief system that values difference, marginalization, alternate realities, and transformation, [Romy's] reaction makes sense." I see a lot of growth in the current Romy- her views about her physical image have changed and matured. We see evolution in Romy becoming more comfortable being photographed- she's very honest about the dichotomies she finds in herself, both being a feminist and also a woman who is conscious of her physical image. She looks into her past and realises with chagrin that she was beautiful- yet couldn't see it at the time. Oh, the irony.
"I am far from bitter and regard my body now as an evolution or progression". The body changes and ages for all of us- are we able to say the same? Romy was also a stage performer who isn't able to sing in the way she used to: "I only hope they remember", she writes. Being remembered is also a theme of this book. There is a dislike of not being seen as you are, and a dislike of being judged which shows through in this Romy- and also optimism and humour.
Dr Shiller describes herself as a "popular culture critic", because that's what she is. She's not a body-in-circumstance, and her memoirs are only part of who she is, not the whole story. She covers many topics: Sexuality, drag, children, pop culture, Judaism, spiritualities, family, body image, love, feminism, friends. For anyone concerned with body image, sociology of the body, difference, personal growth or any other of the many topics Dr Shiller covers, this is a worthwhile book. Those coming across her work for the first time wouldn't realise her physical limitations, her mind and personality are still bright as a chip.
For Romy, the concept of "drag" is important. (Think "drag queens" if you need context.) Given this was the topic of her PhD thesis it's unsurprising the ways in which she's been able to draw upon these views of embodiment and self-projection to formulate her own ongoing project in "cyborg drag". I think the element of wanting to be "seen" also shows through here.
Do you need to read her first book before this one? I don't think so, though the first volume goes into more detail about her coma and immediate recovery and gives a larger context. 'Who Knew' contains more reflection and updates us on her physical condition where appropriate. Great news, Romy is improving! There's a greater degree of honesty, and it appears Romy is learning to be honest with herself too.
While still reliant on assistance she is more critical of family and some friends. In her first book, Romy writes of her family's support. She takes a more critical eye here and opens up about ways in which she doesn't feel supported by her family. I guess we all have family issues to some degree, why should Romy be any different? Perhaps Romy has gained more confidence in asserting herself.
This book finishes with more of a challenge than her first, is perhaps a manifesto: Don't forget me, don't take me for granted. She seems to say "See me, acknowledge me- who I am and what I've achieved. I'm still that person."
All in all, it's a great read and I'm glad to understand more of the life and mind of Romy Shiller.