Off to an interesting meeting today, to learn more about alternative communication
Matt, the main character in my new novel (Opus XIII) is suffering from cerebral palsy. This is a condition that comes in many “flavors”. You may have seen characters with CP on TV, e.g. the teacher’s son, Walter Jr., in Breaking Bad or the main character in the new Netflix show Special. Not unlike autism, CP comes on a spectrum and in recent years, thanks to advances in medicine, we are able to help people with CP to live much fuller lives than in the past. For some, the damage from CP is so big that they are almost completely disabled, in some cases, they can’t communicate verbally. This is where alternative communication comes in.
I’m about to learn more about alternative communication
I’m sure you’ve seen how Stephen Hawking used a synthesized voice to communicate with the outside world. Mr. Hawking didn’t suffer from CP, he had MND. Over the years, you can read it in the Wikipedia article, he used different forms of alternative communication. Here’s a snippet from his appearance on Star Trek TNG:
Today, I have a meeting I’m really looking forward to. It’s with an expert on alternative communication at Dart, which is our local West Swedish center for alternative communication here in Gothenburg. I can’t wait to learn about how methods are developed and to see how I might be able to help Matt to break out of his shell.
(Almost) every case is different
You see, each person with a severe communicative disability is different. Okay, they all can’t speak, some might even be deaf, which makes things even more difficult. As babies and toddlers, our brains quickly learn. We recognize our names, realize who’s a mom and who’s dad, recognize them by putting a face next to a name repeated. My six-year-old son just recently entered a phase where he’s fascinated to learn that pappa and daddy not only have “titles” but names, too. He finds it titillating to call us Alex and Hans. Endlessly amusing.
We also learn to recognize objects, as they’re shown to us: forks, teddy bears, spoons, cups. You get the gist. And a healthy baby will repeat those words and will continue to do so for the rest of their lives as they learn new words. Now imagine if you can’t speak. You can’t repeat what your parents are telling you to. You just can’t get those words over your lips. In time people will realize that something is wrong, and they might take you to a doctor to learn more.
In time, with a lot of research, specialists at places like Dart will be able to find a way to help you break through that barrier. But how?
Not reinventing the wheel
I won’t spoil the story for you, but Matt is particularly challenged. There are a great many ways to help patients with communication challenges. Some might be able to use their hands to move a device that looks similar to a computer mouse to point to objects or letters and make words. Others use an eye tracker to see what the individual is looking at. However, not every method works for every patient and to make voluntary movements (rather than erratic ones which are common in CP patients), it will take a lot of time to determine what might work and what might not.
Unfortunately, not every patient with CP gets help. A while ago a friend told me about someone they met out and about with their parents, a young woman, severely physically disabled, unable to communicate. Just imagine the horror of being trapped inside your body, unable to speak, unable to communicate, make yourself heard, tell the world about your desires, your dreams, your hopes. Would you go crazy? In a way, this is what interests me the most about Matt’s journey.
For me, as an author, I’m not up to the task of inventing a communicative method of my own. Hence my meeting today. I have realized, thanks to Matt, what works for him. Now I need to find out just how I can use that to help him communicate, for the first time in his life. I can’t wait for that day when I get to write those chapters. I’m not quite there yet.
Realistic, believable, credible
At the end of the day, I need the story to be realistic enough to be credible to the audience, believable. Unlike the snippet from StarTrek above, this isn’t science-fiction. I can’t just “pretend” this or that, can’t simply attach a diode to Matt’s head which allows him to communicate freely. We’re just not there (yet?) The story I write is about Matt, it’s about someone who–for now–is relying on me to speak on his behalf. I want to write a story about a human being with a particular set of challenges and it won’t be until the end of the book that Matt gets to speak within quotation marks with his own words. Until then, he relies on me, on the things he tells me.
Books are important. The stories we tell are about seeing ourselves through the eyes of someone else. We want to read about “ourselves”. We crave to have our own life validated through the characters in the books we read. We need to see that we are not alone, the only one in the village. This is particularly important for minorities. And in a way, we’re all part of a minority, some may just be smaller than others. Sex, gender, age, creed, skin color, ethnicity, hair color, glasses, LGBTQ, disabilities, etc. All of these in infinite combinations. We’re all some of that, somewhere, somehow.
So is Matt. This may be his story, but it has to be relatable enough for abled people to maybe learn something and for people with disabilities to feel validated, seen. Maybe that’s a tall order. Maybe I’m not the right person to write about this (I’ve had this argument before), but I am an author. It’s my job to tell other people’s stories. Research helps me make sure I get it right.
I can’t wait to present you with this story, eventually, when it’s done. I expect it to be released next spring. Until then, we have the finale of The Golden One to look forward to.
Happy Release Day to me: the Golden One–Deceit is out
Early reviews for Deceit are very encouraging.
‘Tis time again. A new book drops at midnight PST, which is about an hour from now. I feel pretty good about this book because the reception by readers has been very positive. Yet still, despite all of this, I can’t entirely shake that nervousness that always beleaguers a writer on release day. Which is odd, right? ARCs have been out for weeks, people have been reading the book, it’s been on sale for a month and we have an idea of how it does. Still. Nervous. Even though it’s my umpteenth release day.
A lesson in philosophy dressed as action-packed fantasy
What’s Deceit, or indeed the Golden One, about? On the surface, it’s “young adult” (read: teen literature) fantasy, a shapeshifter story. But dig a little deeper and you’ll find a discourse about humanity’s treatment of Earth, how we treat the one home we have, the very fact that we are literally defecating our own living room, our bedrooms, not to mention our kitchen. If an individual were to do that, we’d commit them to psychiatric care, provide them with all the help and assistance they need. But on a planetary scale, we simply shrug and say “at least he shat in the corner!” or worse, we pretend it didn’t happen.
Another encouraging review.
The way the climate is changing all around us reminds me of the old folktale of the frog and boiling water. Have you heard it? Throw a frog in boiling water and it’ll jump out immediately, but put a frog in cool water and heat it gradually and you’ll have a nicely cooked frog before you know it. Mind you, this story is a fable and not true, but maybe that’s because frogs are smarter than humans?
The Golden One is a mirror of how we treat our planet, and it seems to me, as an adult, that the young generation is the one we need to turn to because my own, and the ones who came before me are utterly unable (or unwilling) to tackle the challenges we face. To hear that Greta Thunberg was nominated for the Nobel Peace Prize is a great symbolic step. She and the kids fighting for the planet are the real heroes out there.
No, it’s anything but boring…
Think this sounds rather dull? Don’t worry. The Golden One is action-packed, exciting and there is always something going on. Who is “good”, who is “evil”? Just that question will keep you busy during the second installment of The Golden One. Jason and his friends struggle with this question and they don’t really know the answer. Not even at the end. And what is driving people to do what they do?
Even though from my husband, but this is the reaction I wish all readers had…
Deceit is also a reflection of adult life vs that of children, the different perspectives we have, and what drives us. Without the burden of grown-up responsibilities, children are able to view the world differently. They have the luxury to see patterns that transcend our adult ability which is clouded by having to earn a living, making sure that we (and our progeny) have clothes to wear, a roof over our heads and food on the table. Kids take that for granted, at least in most of the world today.
Release day, so what?
Yes, it’s release day today. For the rest of the almost ten billion people of the planet, it’s just another Thursday, another day to go to work, another school day. Sunny in some places, rainy in others. A handful of people look forward to Deceit. I am very happy about that, of course, and I nurture a dream that more and more will discover the story of Jason and his four valiant friends. This is certainly a story worth any attention it gets. I say that in all humility.
Tonight, I’ll be celebrating the release of Deceit with a few friends and we’ll look at the final cover for the series, for the third book, Reckoning, which will release in September. Another release day, waiting for me…
Gender equality is critical, not just to elevate women, but to free men as well
I always feel conflicted on this day. It’s such an important opportunity to talk about all the work we still have ahead of us, in terms of gender equality, women’s rights etc. all around the world. Just this morning I heard a story on the news about how a new right-wing party wants to tear up the current abortion legislation in Spain, turn back the dial some forty years. So sad, and so very sad that many women support these policies. No one should ever be allowed to make any kind of decision about your own body than the person themself. Alas, women’s bodies still seem to be the property of someone or something else.
My mother feeding me. 1967. Photo: private
It’s not about vaginas v penises, not really…
Gender equality isn’t really about our sexual organs or biology. Yes, undoubtedly, biology plays a role and has played a role in the past. Today though, it’s more about values. We have men with vaginas and women with penises (and people who do not fit on the binary scale), so we can forego the “biological” part, because unless you know the person in front of you is trans, you’ll treat them according to how you perceive them, not what they may or may not have between their legs, what hormonal levels they exhibit in a blood test or even how they perceive themselves…
The real difference is in how we value that which is considered “male” and that which is considered “female”. Sadly, female attributes are considered less valuable, less desirable, than male traits. As a gay man, someone who’s often been described with female attributes in order to be ridiculed, derided and diminished, I know a little bit about it. My community has made the most of this, taking these so-called undesirable traits, elevating and celebrating them. #Drag When we call each other “bitch!” it’s a compliment, not a slur. We’re fierce, strong!
Unfortunately, for society, this skewed value attribution is detrimental. Boys are still (sadly) raised to oppress whatever traits that might be considered female: show emotions, cry, care etc. Instead, they’re pushed to compete, struggle, fight and overcome adversity, to “be a man”. Mind you, these traits are not “bad” per se, but unless they are balanced by empathy and caring, they become dangerous. A man who fights and competes to advance is potentially dangerous if he doesn’t feel empathy for those around him or care for those he competes with. A woman, similarly, is a walking target for abuse if she doesn’t compete or fight for her place if all she does is feel empathy and make excuses.
Ying and Yang. Only together can male and female attributes form a complete human being, regardless of how we identify.
Male and female traits, in a way, are like Ying and Yang. Only together do they make us whole as human beings.
Equality isn’t women’s struggle. It’s a human struggle
I often look to my own parents to see how gender inequality can destroy lives and affect people across time and even generations. My mother was raised in a conservative Catholic home (they all were back in the 1940s.) When she got married, she’d advanced to a purchaser for a local clothing store and had a (potentially) rewarding professional career ahead of her. She had an amazing sense of fashion and was always dressed meticulously. My dad, a carpenter, wanted to move away and she gave it all up, for him (of course.) When they got married, my mother knew nothing (sic!) about sex. Nothing. Imagine the shock.
She raised me and my brother to be different than what my dad had been raised to be. Not that my father is a bad person. Quite the contrary. But just as my mom was a victim of societal expectations (and she played her role well), so was (is) my dad. He worked very hard, built a very successful business, providing for us, and became a person of great influence in town. We often jokingly refer to him as the “King of Samedan” because of that. Part of that image was also to be successful in sexual matters, and affairs with several women were the result, in part because my mom couldn’t due to her upbringing.
I don’t know when my mother first found out about those affairs. I recently learned they began in 1981, but the first ‘clash’ didn’t come until 1985/86 when I was in the US. I missed it all. I couldn’t miss how their relationship had changed when I came back though. But my mother wouldn’t leave him. Threaten? Yes. But a good woman doesn’t leave her man. It’s how she’d been raised and she was unable to break out of the expectations of what it meant to be a good wife, a good mother.
Grandfather and grandson feeding the birds together. Those two… Photo: private
When my mom died, five years ago, my dad was devastated, even though he’d continued to stay in touch with at least one of the women he’d had affairs with through those years. I know because both my brother and I got an offer to inseminate her Lesbian daughter just a couple of years before mom passed away… We both politely (not really) declined. My dad could not cope with being alone after her death, he’d burn the water on the stove… It didn’t take many months before he considered at least four (!) different women and we all joked about what he’d labeled “Beuteschema”, i.e. target audience, to translate it a little bit less offensive than the German term.
Fast forward and my dad is dating the “other woman” and they spend a lot of time together. He’s grown a lot as a person in the past few years and is a lot more open about his emotions, and he’s an amazing and loving grandfather. But there are still lies, there are still cover-ups, and there are still other women that I’m not supposed to know about. His male ego still needs to be stroked. He needs to feel that power rush of being valued by women. Mind you, it takes two to tango, and cheating isn’t a male thing, but I believe that men cheat for different reasons: for them it’s the fear or loneliness, of asserting their power, having something pretty by their side, being looked after, cared for, while women do it to be seen, valued, affirmed. Two sides of the same coin. Ying & Yang all over.
To break the cycle
Unfortunately, this behavior, the effects of the inequality my parents suffer from, also affects their children. Having been my mother’s confidant for decades, I am the living memory of my mother’s pain and the betrayals against her. Every time I see my father’s new woman, I remember all the countless times my mom cried and lamented at being cheated on. It makes family gatherings very difficult and had it not been for my son and his right to spend time with his grandfather, I have a hunch I would avoid the pain if possible. Alas…
Here’s to a better, brighter future, regardless of gender.
So how do you break the cycle? I’ll be honest, I see little hope for me to ever feel differently about what happened between my mom and dad. And I doubt my feelings toward the other woman will ever change. What I can do is try and make sure that I raise our son to be different, to help him be a true human, someone who competes and fights, someone who is truly whole and who doesn’t judge others based on their biology or gender attributes, but based on their heart and mind. It’s an uphill battle because society doesn’t change at the pace we’d like it to (quite the contrary.)
Countless times have we had to point out that “no, that’s not a girl/boy thing” when he came home to tell us about something at school.
I try very hard to break the cycle. I’m a faggot, I’m in touch with every feminine side there is, and I celebrate those traits, every day, just as I relish my masculine characteristics. I can wield a hammer as well as I can stir a pot with a spoon. Let’s all work toward this common goal. Not just today, as we wear purple to honor our sisters, but every day of the year. For all of humanity, women, men and nonbinary people alike.
I wish you all a most auspicious International Women’s Day 2019.
I recently began writing the second book in the series about Valerius and Evander. Let’s be honest, it’s only really a series if you have more than one book, so duh, given that we called it a series, I needed to continue writing about the two princes whose love story was at the core of book one. I see Valerius and Evander as a way to use to “tool” of a fairy-tale to tell young kids (as a bedtime story) about diversity. Reception of the first book was really great, from both parents, librarians and some of the kids themselves. My son loves it (which is the most important praise.)
The second book deals with becoming parents. A challenging topic for every grown-up. I mean there has to be a reason we invented the stork, right? We use it because we feel uncomfortable talking about sex with children. And because it is difficult to explain the whole eggs and sperm concept to children.
To be honest without overwhelming children (or bore parents)
At first, I had this idea to explain all the various ways in which a gay couple (Valerius and Evander) could become dads. I introduced a Lesbian couple to explain the womb and IVF and surrogacy and suddenly I felt lost. I can barely grasp these concepts myself, from a medical point of view, even though I’ve done it myself in real life and wrote a book (primarily for my grown-up son, but also for adults interested in surrogacy and IVF) about it. However, this is all so very difficult and complex that I finally ended up abandoning the concept. The two queens are still in the manuscript (for now), but they might yet be bumped, as their presence fills no real “need” purely from a storytelling aspect.
Writing for kids, particularly very young children is challenging. As an author, you want to make it fun and exciting while at the same time tell the story and convey whatever lesson the book is meant to tell. Children’s books tend to be a bit on the educational side, and whenever I talk to schools and libraries, it’s what they tell me: we need this or that, we have no books on this or that.
Front cover of my coming children’s book The Dragon Princess, releasing September 20, 2018
Focusing on the child, the story, rather than the procedure
What I ended up doing was just writing. I subject Valerius and Evander to a challenge, or two, and then help them figure it out. In this particular case, it’s an orphanage. In the realm of the fairy-tale it’s workable, even though in our modern day and age, most societies don’t have orphanages anymore. We use foster care instead. To use children in an orphanage allowed me to talk about the plight of children who most commonly end up in LGBT families: orphans or abandoned kids.
To talk about why some parents can’t raise their own kids isn’t easy, and this is the most difficult aspect of re-writing and editing right now. I have enough text to fill the book, but is it the right text? The right words? It’s about teaching the kids new words, but also help them understand societal phenomenons and to enable a discussion between parent/teacher and child when reading the story together. In a way, I have to go back to being a teacher and use pedagogy all over again. Fun, yet difficult because in my daytime career, I used to work with adults. The irony…
So what is Valerius and Evander 2 all about?
The story highlights the wish of our Princes to be parents, that which we label as involuntary childlessness. While recognized and part of the medical profession’s arsenal when it comes to het parents, for gay couples, this is still a territory mired with discrimination and–frankly–lack of understanding and deeply rooted homophobia. That’s where the book starts. Easy, right? It then moves on to show how children are a natural part of society and how they are literally everywhere: in towns, on meadows and even in the forest. To use animals helps to keep things grounded for the kids.
That’s when the orphanage comes in and gives the two princes something to sink their teeth into, but as they busy themselves with helping those kids, their own needs are put on the backburner, which, eventually, leads to the big conclusion of the story, and a chance encounter… To find out what that is, you’ll have to wait for the book to be released.
I still feel that I’m a long way from being done with this. The first book in the series took almost three years to be done. Oddly, it’s so easy to write down the story in a rough draft, but incredibly hard to rewrite, to make sure it’s understandable, relatable and on par with the level of understanding we can expect from a four-, five-, or six-year-old child. Once the text is finalized, edited and proofed, I’ll contact Felicity for the illustrations. That’s when the real magic happens…
Are you looking forward to it? Any other topics you would like to see Valerius and Evander to tackle?
A few days ago, I was invited to join Pen Sweden, a club within Pen International. I was deeply honored to be considered for membership of such a prestigious organization. As a writer, my pen, my keyboard and the words they create are my way of changing society for the better. I have always held a deeply felt conviction that we must speak up. Speak up about injustice, speak up against prejudice, persecution, speak up against racism, homophobia, misogyny. Pen International takes all of our pens and turns it into a powerful force to be reckoned with.
I first heard of Pen…
I will never forget the first time I had heard of Pen International. Salman Rushdie published the Satanic Verses and as a result, some priests in Iran were in desperate need of a diaper change. To have, as they believed, Islam sullied on the day of their greatest triumph was considered blasphemy. Shortly after that, a fatwa was issued against Mr. Rushdie. Mr. Rushdie deserved, the claimed, death for his words. That was in 1989. I was twenty-two years old at the time, I was working as a banker in Zurich and had never heard of Mr. Rushdie before. Yet somehow I noted the strong and global reaction by the literary community and the strong condemnation of the fatwa by Pen International.
Around the world, authors and writers rushed (no pun) to his defense and that was the first time I heard about Pen International. I have held this organization in the highest regard ever since, for speaking up in the face of death threats, and I have followed their work from a respectful distance. This is particularly true considering how some authors and some literary organizations with power, e.g. the Swedish Academy, who awards the Nobel Prize for literature, acted. They refused to speak up which led to some of the members to leave the academy. The final “empty chair” wasn’t filled until late last year when the last of the “Rushdie” members was finally allowed to officially leave the academy and a replacement was voted in. Almost thirty years later.
There is a risk associated with speaking up
To speak your mind, to exercise our “freedom of speech” is not without risk. Maybe the Swedish Academy was afraid of what might happen if they spoke up. Terrorist regimes, like the one in Iran, do not shy away from using violence against dissidents, even abroad. Just last fall, Scandinavian police forces stopped a plot by the Iranian secret police to kill exiled Iranians in Denmark. 2018. Iran is not the only country that has little regard to our human rights: Saudi Arabia and Khashoggi, China and Gui Minhai, the Swedish author and publisher who was abducted in Thailand and taken to China against his will, Dawit Isaak, a Swedish journalist who’s been imprisoned without a trial in Ethiopia and so on and so forth. Unfortunately, the list is so much longer.
A few years ago, I spoke up against the human rights violations in Russia, particularly for the LGBT community on this blog. Suddenly, I noticed that I no longer had readers in Russia (even though I had many Russian readers in the past.) It seemed that my criticism of the Sochi Olympics and the horrific treatment of its queer citizens had scared the government there into blocking my blog from reaching Russia. As feeble as my pen may be, it had stung someone somewhere.
Things in our society are far from perfect, but…
Last night, my husband and I had a discussion with our godson about equality in Sweden, and while we may be frustrated with the lack of progress here and there, and rightly so, our life here is still infinitely better than that for many other people elsewhere. Personally, I see no conflict between working to improve things locally with speaking up for those who are infinitely worse off elsewhere.
In Sweden, we lament the lack of progress in fathers taking their six months of parental leave. In most countries of the world, the concept of paternity leave is completely foreign.
In Sweden, we are frustrated by the fact that we still haven’t had a female prime minister. In Saudi, women can’t even leave the house without the approval of a male.
In Sweden, we are frustrated about the red tape that queer families have to cut through to legalize their families and children. In fourteen countries, simply being queer incurs a death sentence and in another eighty or so, it will land you in prison. Marry? Children?
In Sweden, I may be frustrated by angry and pointless letters to the editor. In many other countries, such letters are inconceivable, dangerous.
I add my voice to the chorus
The work of Pen International and its national chapters is incredibly important. We speak up for those who have been silenced. We speak up for those who have no voice, and we are a constant reminder to those who oppress, discriminate and hate, that they are seen and recognized for who really they are and what they do. “Freedom of speech” is such a treasure and the very foundation of a free society. And never before has it been more threatened than before, by novel concepts such as AI, fake news. Coupled with state disinformation campaigns, blatant political lies they become a real threat to the fabric of our societies. I can only hope that my pen will continue to be an annoyment to those who deserve to be annoyed by it, as tiny as the sting may be.
The answer is – sadly – still the same. A more important question would be: will this (ever) change?
I’ve written about pen names in the past. Pen names can be necessary for authors to protect their lives, their families and loved ones. Pen names can differ for authors who span across different genres, to keep audiences separate. Or they can be used to dip their toes in a new direction. Sadly, there are also criminal elements out there (there is no other way to describe them), people who know that their writing either isn’t good enough or not popular enough, and who use their pen names to catfish for money. There is a new case of this almost every month. It never ends. To use a pen name, let me be crystal clear, is totally okay. As I’ve said countless times before, people have good reasons why they choose a pen name.
The Cover of my coming fantasy novel The Golden One – Blooming, the first in a trilogy about seventeen-year-old Jason Mendez. The book releases in exactly one month, November 15th.
But why would women choose a male pen name?
However, one thing that puzzles me is this: so many female authors choosing male pen names. Why? When Karen Blixen couldn’t publish her first book in the U.S., she was forced to choose the male pen name Isak Dinesen to get it out. That was 1934. Almost a century ago. Today, when the majority of readers are women, and the majority of authors, too, and no publisher would refuse a woman to be published under a female pen name, why is this still a ‘thing’? Mind you, this isn’t about trans or gender queer people. I would never presume to question their right to choose a pen name that better fits their gender identity.
But just last week I was asked about this again, since yet another female author was ‘caught’ using a male pen name, despite identifying as female. Sadly, the answer is as simple as it is sad: “male is better than female”. Or so it is still perceived by society, which includes most women. That makes me sad, very sad because as a gay man, I’m all too familiar with that axiom. My worth as a human is considered less because many of my “gay traits” are considered female, and the typical homosexual is still viewed as effeminate, weak, passive. Needless to say, I disagree with that assessment.
What message do they send girls?
It’s sad that readers will rather read a book from a male author than a book written by a female author. VERY sad. Pathetic even. And for women to choose a male author over a female author? What did Madeleine Albright say about that special place in hell? I can understand how an author might deliberately choose that male pen name to be more attractive to their potential readership. Money. But they are doing their gender a huge disservice, cementing the status quo.
What message do these authors send to girls? Male is safer? Male is more financially rewarding? Male is better? Even women prefer male? Is that really the message a mother wants her daughter to hear? Surely not? Unless you’re a Christaliban, of course…
Will this change? Ever?
It is frustrating that we still, in 2018, must talk about this. Despite great strides we’ve made toward gender equality in recent decades, despite the energy from the #MeToo movement, and the lessons we should heed from the Trump election and the Kavanaugh hearings. How can women ever expect to achieve true equality if they themselves keep betraying their own?
I wonder. I have no answers. Do you? What is your take? Why do so many women choose male pen names?