Romance Books: Don’t Fetish Disabilities

Something interesting has happened as publishing looks more and more to getting diverse characters on the page. This isn’t something I noticed right away, but one that has built up over time.

I write characters with hearing loss. I write romance. I’ve seen agents and editors looking for deaf characters, yay! But then I stop and take a closer look, and the requests almost always come in this form:

Disabled Hero.

I write “disabled” because it’s not always hearing loss alone. This isn’t something limited to ears, it’s something much wider across the disability community. And I can’t help but wonder:

Is this a fetish?

I’ve had a hearing loss my entire life. I write hearing loss characters as my hero and heroine. I’m growing stronger in my own identity as I see my ears as strong and attractive.

But publishing is starting to tell me it’s only attractive in males. Not females.

Why can’t my heroine be the one with the disability? Why can’t it be a book that empowers disabled readers to feel strong, confident, and sexy?

Because that’s not the fetish.

The fetish is the male character who could be played by Nyle Dimarco. Now, don’t get me wrong, I love Nyle. Not only is he extremely attractive but he’s also a strong advocate for the Deaf community.

Let me break this down further: when you give the heroine a disadvantage, that disadvantage is scrutinized to the best of feminine intent. Because females are hardest on other females, make no mistake about it. But when you give the hero a disadvantage, then it’s remarkable and sexy, and…

No. We need to embrace diverse characters through all genders. We need to accept that male or female or other, a Deaf character has a history of oppression and strife. More importantly, most are happy and healthy adults, proud of their ears.

This isn’t a story of overcoming a huge hurdle. Honestly. The biggest hurdle I faced with my own hearing loss is accepting myself as I am, of being proud of my ears. This isn’t something an outsider can do.

And let me add to this, because I grew up in the hearing world: I often felt I wasn’t worthy of finding love. I’ve been a hopeless romantic from the start, but I really wondered about dating with a hearing loss. And before you wonder why, show me my role models? As someone who grew up in the hearing world, the only other people I knew with a hearing loss were elderly. I didn’t have young role models. I didn’t get a chance to read books like SIGNS OF ATTRACTION, I didn’t have the ability to know my own worth.

(And I know there have been books with hearing loss in them for a long time. The few I’ve found often have a very negative portrayal, so I honestly tread very carefully while reading them.)

Fortunately for me, I found a great guy in high school and latched onto him. However, that means I never fully came to terms with my hearing loss on an attraction level, not until I put it into my stories.

Will male characters really make that difference for me? Especially when they’ll often be alphas completely comfortable in their own skin? No. It will be great to see, but it won’t be what I need.

If you are looking for a disability to be in one gender, but not the other, ask yourself why. And then ask yourself what you are telling the many, many people out there who have that particular disability. Are we only worthy if we happen to be male? Are we only worthy if we look like Nyle Dimarco?

Because we’ve played this game our entire lives: Are we only worthy if we can benefit from hearing aids? Are we only worthy if we can speak? Are we only worthy if we don’t need accommodation? Are we, are we, are we?

The answer is yes, we are. Now help me show that in our books and movies and television. Check yourself, ask questions to the minority group. Be the role model as well as the love interest.

Writing About Disability: An Insider’s Confession

As a writer with a disability, I have a confession to make. Whenever I see a book has a character with a hearing loss, my first reaction is not “Yay! Diversity!” It should be, but life has taught me to be cautious.

My first reaction involves the urge to step back and walk away. My first reaction doesn’t know if the author did his/her research. My first reaction doesn’t want to be right.

Having had a hearing loss all my life, I know one fact very, very well: people think they know hearing loss. They don’t. Hearing loss is one of those topics that everyone knows about. It’s common knowledge. But this “common knowledge” rarely involves the truth of not hearing.

Case in point: I started learning ASL when I was in college. My mother mentioned this to a family member. The response? “Shouldn’t she learn to lipread?”

1) I wasn’t taking ASL for my own benefit, not at first. 2) I’ve been lipreading my entire life; it’s not an exact science. In fact, the lips only show 20% of the words, the rest is inferred. 3) If I managed to communicate well, why did I need lipreading?

Nothing against the masses, just the simple fact of what a common notion does when put into action. I’m sure those with other disabilities will say the same. The public knows about the variety of disabilities one can have. But unless we’re actively involved, we don’t know shit.

Back to writing. Sadly, most books I have picked up with a character who has a hearing loss lead me to banging my head with my Kindle. True fact. There aren’t many, but after you read a few that are so far off the mark it isn’t even funny, you grow leery. I oftentimes try and research if the author has any personal experience prior to picking up the book.

This doesn’t mean an author can’t do research and do it right. One can. It’s been done. However, it takes the right type of author, the right type of research, to make it happen. I read a more recent novel with a Deaf main character (capital D to denote someone culturally Deaf, not just a person with a hearing loss). I bit my lip, shut down my apprehension, and read.

On the whole, this author did her research. So points for her. And she had the character in a career that many wouldn’t think to put a Deaf person in, so double points. BUT, and this is capitalized because it is huge, there were many instances in the novel that were so far off from reality I ended up banging my head with my Kindle. One small example: the continued use of first names in ASL, as in “Hi Laura, how are you?” Nope. ASL only uses sign names for those not present, or when teaching a baby their own name.

At the end of the day, research is great, but you can’t know everything. In my own research in areas I don’t have personal knowledge on, I seek out personal experiences. Since I look at the world differently due to my ears, I try and find the little nuances that make the research ring true. I won’t get it all right, and that’s okay. I don’t expect someone to get it all right with hearing loss. Even if I’m banging my head with my Kindle, if the author shows respect and understanding, that’s half the battle. And that warms my heart.

But when someone gets it wrong, the damage is huge. Even in fiction, people read novels and acquire knowledge they previously didn’t have. So if a novel depicts false information, then that false information spreads. To be fair, I feel the same way about social workers receiving a bad rap in novels, since I worked as one for a decade.

I will probably always need a moment before checking out a novel with a character who has a hearing loss. The fear of it being done wrong is huge. I do hope, with the push for diversity in books, more and more people will do their research, will put respect first in their art.

In some ways, I want to leave the disabled characters to those of us with personal knowledge. This may be selfish of me, as I write about characters with a hearing loss and I’m damn proud of my work. But like many minority groups, we want our own voices heard. Not yours, not your interpretation of what our world should be like. The truth. From us.

You might be able to walk a mile in someone else’s shoes, but can you put those shoes on as they do? Can you walk and interact and have your outsider status be invisible? Can you say with 100% conviction that this is right? Think about this the next time you write about someone different than yourself.

I know I do. My goal is to make those other disabilities appear as truthful and fleshed out as my hearing loss characters. The bar is set high, since hearing loss is my life, my degree, my work. I know I won’t be 100%. But I aim for damn close

Do you?

This post also appears in support of the #WriteInclusively movement. Click here for more information.

Where My Imperfect Ears Have Taken Me

I have a disability. I don’t consider myself disabled. To me, my disability is my identity, a positive part of who I am. This is a very foreign concept to most people. You couldn’t pay me to change my ears, to become hearing.

To many I’m pitied. How can I be happy to have a hearing loss? I stumble over how to explain this, how to show this. Really, how does one show they are comfortable in their own skin? Just by being themselves.

How about a listing of positive parts of my life that came to be because of my ears:

  • My acceptance to college: I went to a college for younger scholars. Halfway through my interview I mentioned my hearing loss. My interviewer was impressed, having had no clue I struggled to hear. This is how I went from my sophomore year of high school directly to my freshman year of college.
  • My journey into Social Work: I graduated with a degree in Deaf Studies and began searching for a job with individuals with a hearing loss. I stumbled across social work and my next two jobs were based, in part, on my own ears.
  • My bridal party: Out of the two ladies who stood with me when I got married, I could hear the most. Some of my best friends have hearing loss, people I wouldn’t have met with “normal” ears.
  • My writing: I made a promise to myself years ago that all my novels would have at least one character with a hearing loss, and I’ve held up my end of that promise so far, with no desire to go against the grain. This lends a unique attribute to my writing and has become my niche.

Have my ears made my life more difficult? Definitely. Am I stronger because of those struggles? Hell yes. Would I change my ears if I had the power to do so? No. I’m perfect with my imperfection.

Differently-abled is Beautiful

As a writer with a disability (and I struggle to accept this label, always have, I feel different, not disabled), my craft has grown to including main characters with different abilities. Some, like my hearing loss, are invisible and not easily seen. Others are more obvious.

I have a hero who is missing a leg. I’ve done a lot of research and have nothing but respect for those who use prosthetics. Since I write romance, I’ve taken the mystique out of it. I’ve needed to know how the limb works, how the prosthetic is put on and removed, etc. And in all my research not once has the stump or prosthetic felt unattractive.

It’s not. Different? Yes. Unattractive? No.

I hope my writing shows this, and my readers swoon over heroes who are not the run of the mill. Furthermore, I hope to give those that are different an opportunity to view themselves in the positive. As they should.

Don’t believe me? Check out these photos posted recently from photographer Michael Stokes. They depict wounded veterans, showing off missing limbs and prosthetics. These men and women are fit and toned. They are confident, they are attractive, and they show us just how beautiful different can be.

Oh, and hot, definitely hot. (swoon)

The picture below is one example, one that reminds me of the hero I’ve written. Click on the picture and see the rest. I think you’ll agree. Be sure to wipe up the drool when you’re done.

http://www.boredpanda.com/veteran-amputees-hot-calendar-photoshoot-always-loyal-michael-stokes/

 

Hearing Loss, Hearing Aids, and Swimming

As a kid, I loved going to the pool or the beach. I remember having a blast at water parks. Hearing aids are not water proof, so each time I went the hearing aids stayed at home or locked up some place dry.

My hearing for my childhood was mild/moderate. So I heard less without my hearing aids on, but I was still able to communicate in spoken English.

As an adult, however, things have changed. I feel hesitant going to the pool or the beach with my son and I struggle to communicate in spoken words at these locations more than I remembered. I chalked it up to the loss of innocence and being more aware of things. The addition of wearing glasses and not always wearing my contacts helped.

A few weeks ago a light bulb flashed over my head. I suddenly realized why I no longer enjoyed water like I used to. While my left ear still has a mild hearing loss, my right ear is now moderate to profound. Without my hearing aid on I don’t hear spoken English unless it’s really loud. Even then the sound is off, consonants missing. I listen with my left ear and, in many ways, always have.

So the reason I don’t enjoy the beach and pool like I used to is because my hearing is different. My good ear remains the same, but the change in my bad ear is enough to force me to struggle. My family and friends understand, but a stranger? Forget it. And even though I’m comfortable with my hearing loss, it doesn’t also flow in a conversation.

I know ASL, but at home I speak most of the time. I’ve known my husband since before I knew ASL, so it’s natural for us to communicate in English. He took a few ASL classes for me, and we’ve tried to implement SimCom (simultaneous communication in both languages) at home. But English is the language I use on instinct and since I understand him most of the time, our attempts slid away.

When my son was born I was determined to make him bilingual. First problem: my son is hearing. I have a tendency to sign to those who need it, not just because. But I tried with him. Second problem: he doesn’t hold eye contact well. It’s hard to sign to someone who isn’t paying attention. To be fair, he did pick up some ASL. He counts in ASL, he knows the alphabet, and he signed a few words before his English picked up. He’ll sign “please” to butter me up with an angelic face. So even though I had the best intentions, I stopped signing.

The only person I can blame is myself. A social worker by nature, I put others communication needs before mine. I match my communication style to those I talk with. I don’t put what I need first. And because I don’t put my own needs first, because I fall back on what is easy and simple, I can’t go to the beach and switch to ASL with my family.

My fault.

I’m trying to change my ways, force my hands to move more at home, expose my son to signs again and hope my family will follow suit. I haven’t mentioned this to my husband yet, so I hope he a) will see what I’m doing and b) read this and understand where I’m coming from.

English is my native language. I’m comfortable communicating in spoken language. But it comes with its own trial and tribulations. I’ve spent my life dependent on my left ear. In the back of my mind, I’ve had a little voice whispering, “What happens when it changes?” My hearing loss is stable, everything that has happened to my right ear stems back to surgery and blows to the head (I’ve fainted a few times, I don’t recommend it). Yet older adults can have late onset hearing loss and I suspect I’m not immune, even if I’m already used to it.

Instead of being frustrated and not enjoying the times when my hearing aids are off, I need to make changes. I need to sign more often. I need to push past the ease of English, when I like to talk a mile a minute, and slow down enough so my hands can follow. Above all, I need to put my communication needs first. It won’t be easy, I’m sure there will be ups and downs until new habits are formed. But if I don’t make those changes I’ll continue to find myself in situations where my hearing loss frustrates me. And as an ASL user this shouldn’t happen.

My Niche: Differently Abled Characters

Back when I first started writing I knew two things: I wanted to write romantic stories and I wanted to have characters with a hearing loss. At the time I felt supporting characters were best, but have since changed my mind and put those characters front and center.

I’ve written a total of three stories where one or two main characters have a hearing loss. I love it. The action puts a huge part of myself onto the page. And I know I add authenticity to the characters when writing about something I experience firsthand.

And then the characters began to grow, and I ended up with dual disabilities. I researched the second, wanting to give it the same realism as the hearing loss.

And in a moment of clarity I realized something: I want to write differently abled characters. Not just hearing loss, though I still have plans to have at least one in each novel. People with disabilities are strong, powerful, intriguing people. We come from all walks of life. We are misunderstood, picked on, teased, under appreciated. And I want these characters to be my main characters.

My mother-in-law will probably tell me: I told you. Back when I was still in college, earning my degree in Deaf Studies, she told me I should work on being an advocate for all disabilities. At the time I couldn’t wrap my head around this, as I saw the unique differences between each disability and didn’t know how I could champion all of them.

I know now. This means each character will take extra research, and nail biting, to get right. It will be worth it. I’m already researching something brand new to me, excited to look into a different world and let it breathe on a page.

I’ll have an added challenge here, as I write romance. I’ll need to make each disability attractive. Fortunately, beauty is in the eye of the beholder. And I experience this first hand. I’ve struggled with my hard of hearing characters. Even though I have a husband who tells me how beautiful and desirable I am, I still feel like that awkward teenager who couldn’t get a date due to her ears. As I write a character who wears hearing aids, a subconscious undesirability bleeds through onto the page. I have to force myself to overlook this personal character weakness. It’s been an experience, trust me.

This is my niche. I’m excited. I feel as though I’ve found my calling, my purpose. I can’t wait to see where my research leads me. The only question left: will there be an audience?

Well, what do you think?

The Story of my Hearing Loss: Part 1

I’ve been writing a lot about hearing loss in the past few months. Sharing bits and pieces of myself in my characters, but not sharing my story. How I came to be who I am, which is an adult who is comfortable with her own hearing loss. The story is a long and winding road. Today I’ll start at the beginning.

I was born with what is called bilateral conductive hearing loss. Meaning my ears were not the same. I had nerve damage in both ears, bone damage in one. My left ear heard better than my right from day one. Only about 10 decibels separated the two, not a significant difference. And yet I learned to depend on my left ear over my right.

As an only child in a loud family my hearing loss wasn’t immediately discovered. My hearing loss is mild/moderate, meaning I was able to acquire language without hearing aids, I was able to hear and understand, even if not in every environment. In fact, I passed two hearing tests. In preschool tests were given to three students at the same time, facing each other.

Little known fact about kids/adults with a hearing loss: we’re very good at following the leader. We take our cues from our environments to figure out what is going on, and fill in the gaps from what our ears don’t hear. It’s as natural as breathing.

So there I am, watching my peers hear the beeps and raise their hands. I raise mine. The following year I had a one-on-one test. Each time the tester looked at me for a response I raised my hand. To this day I know when I’m supposed to be hearing something, and have to stare at a corner of the sound booth when taking a test.

It was my kindergarten hearing test that discovered my loss. The kind of test where there is a board blocking the tester and testee. I failed. The school sent a letter home to my parents, notifying them I failed.

I’ll save for another day my kindergarten teacher’s reaction. I’m sure she’s to blame for some of my insecure quirks.

My mom opened the letter, and was rightfully upset that no one bothered to call her about this. I got a hearing test and what do you know, I have a hearing loss. I was five and a half years old. The solution to my hearing loss? Hearing aids.

A story for another time, why hearing aids was not enough.

I was a go with the flow kind of kid. Learned how to take care of my hearing aids. Understood they couldn’t get wet, no one else should touch them, etc, etc. I went home and what felt like the following day for me (but my mother remembers it differently) I ran through my neighbor’s sprinkler. With my hearing aids on. I also remember being the bathtub and quickly yanking off my hearing aids and handing them to my mother.

To me, hearing aids were just something I now wore. I don’t remember any transition. Then again, I was young and I have an awful memory. My mother remembers me asking what the noise was in my room shortly after getting hearing aids. It was nighttime sounds. I had never heard them before.

And before anyone feels bad for me for not hearing nighttime sounds: I really don’t care whether I hear them or not. 

I never accepted myself as being disabled. I used the term “hearing impaired” but never felt impaired. To me, having a hearing loss was just who I was. Who I am.

In reality, having a hearing loss in a hearing world is not easy. More on that another day.

I’m Not Disabled—And Neither Is My Character

I have a hearing loss. It’s a part of who I am, the same as the color of my eyes or the curl to my hair. Throughout my life it’s been both positive and negative. Regardless, it’s always been an IS.

I never identified with being disabled. Sure, I’m different than the norm. I have trouble hearing in certain situations. I wear hearing aids. But disabled? No. Even as a small child I never accepted this term. Different? Yes. Disabled. No.

I’ve been thinking of my hearing loss a lot lately. Because I’m revising a novel to make one of my main characters Hard of Hearing. I thought this would be easy. I don’t need to research hearing loss, or hearing aids. I don’t need to figure out what something sounds like. I was wrong.

Hearing loss is such a wide-open field. I had to decide what type of hearing aid my character wears. Both ears or one? Does the loss affect speech? How well does a character hear in a variety of different situations? How well does the character hear without hearing aids on?

Many questions, and it took me some time to figure out what the right combination was for the character, and what worked best for the plot. I’m still debating if the character has colored hearing aids or not. Personally I’m not opposed to color and hope to have purple in my next set (I currently have one in the ear hearing aid in flesh tones, and one behind the ear hearing aid with a clear shell and the inside mechanic visible).

The ultimate problem was simple: hearing loss is a part of my daily life. Reading captioning on the television: normal. Missing something that is said and needing it repeated: normal. Mishearing something and making a fool out of myself: embarrassing but normal. In writing a character with a hearing loss I have become extra aware of all those little nuances in my daily life that differ from a hearing persons. And I have the added challenge of putting those nuances in a plot.

No one wants to say “what” a million times a day. I do. No one wants to read “what” multiple times in each scene. It’s a challenge to keep the hearing loss front and center for the reader without making it too little or too much.

A large part of myself ended up transferred onto the page. I had a scene in mind for my character to be without hearing aids. The scene spoke to my own insecurities and all of a sudden I’m the one on the page. Exposed. It won’t read that way when someone reads it (unless they remember this blog post and put two and two together), but it reads that way to me.

And I’m thrilled. That little part of my soul is going to live in on with my character. I’m connected. I feel what the character feels and I know it to be authentic.

The challenge remains. I have to show a character as different, as the disability, even when I don’t feel disabled. I need to keep in mind what makes the character different from a hearing person. I’m excited. I can’t wait to share this with others and see what feedback I receive.

I’m finding my niche. It’s a part of who I am. It’s real. It’s true. It’s me. Time will tell how it transfers once off my laptop. I’m excited for the journey.

“Fix Me” – Learning to love imperfection

We have a “fix me” epidemic in this society. The old saying “If it’s not broken, don’t fix it,” no longer applies. Instead we are looking for problems to fix, looking for ways to come to perfection. There is a catch; perfection is in the eye of the beholder.

Walk through any gallery and strike up a conversation about any given work of art. Chances are the two people will not agree. Yet we as a society have a so-called “common view” of what perfection is. Perfection is a tall, skinny person, with aesthetic features, good sight, good hearing, good health. No sicknesses or disabilities.

Ignoring the fact that this aesthetic person will be different for each individual, although most will agree with magazine’s “most beautiful” sections, this description is but a small portion of our society. Yet, we all want to fix anything else: obesity, paralysis, blindness, deafness, anything not normal. We want to fix too much.

On the outside, on the aesthetic realm, I am told I meet “perfection.” Humble as I am people say that I am thin and good-looking. I, on the other hand, notice the 20 pounds I’ve put on since college, the cellulite on my thighs, and the old lady’s nose on my face. Still I meet some sort of mold. Until what is not instantly visible is identified. In one ear I have a purple hearing aid mold attached to a clear mechanical shell, on the other I have a small beige in-the-ear hearing aid. I am Hard of Hearing. Not hearing impaired. I have a disability, not a handicap. And unlike the current epidemic I don’t want to be fixed.

Give me hearing aids, I accept those, keep the knives and needles at bay. I am Hard of Hearing, just like I am a woman, just like I am Jewish. It is part of my identity; it is part of who I am. To “fix it” robs me of being me.

There are a lot of surgeries out there to correct hearing. I’ve had one on my right ear. I was eight; I thought I was making my left ear better. The surgery failed and took my right ear from moderate, to profound. Granted, the loss was not overnight, but the surgery did weaken the ear enough to cause future damage. Yet in some ways I am happy I’ve had the surgery. Unlike most people I have one less bone in my body. The incus, the second smallest bone in the body, is sitting in my living room, glued onto a piece of paper mapping where it used to be in my ear. Luckily no one has yet to suggest that I put the bone back in.

It took me many years, but I am happy with who I am. On the inside. On the outside I’d still like to return those 20 pounds back to the refrigerator. Yet people still ask me if I can get surgery to improve my hearing. The key word here is “can,” they assume I want to be fixed. Luckily there is no surgery out there that works for me. The controversial cochlear implant is for someone with far less hearing than me (my left ear, sans its hearing aid, is still listening to hum of the air conditioner in the background) and I don’t see ENT doctors frequently enough to have to field off any mentions of surgery.

Don’t get me wrong; some people want to be fixed. And if they want it then they should be fixed. I have a friend who recently got a cochlear implant and is thrilled. I couldn’t be happier for her. What bothers me is a story I saw on the news. I missed most of the story, and the captioning was scrambled, but apparently some family flew to Massachusetts to have their baby implanted. My view is against the implant but I don’t doubt the family their decision and this may very well be the right choice for them. But I can’t help but feel like the spotted eagle. I can’t help but feel like me and my kind are going to be extinct.

Perfection has its drawbacks. If we can’t accept someone in a wheel chair, walking with a cane, talking with their hands, then how are we supposed to accept one another? How are we supposed to move forward as an open-minded society? The more we fix the more problems we will face. Soon we will back to fixing religion and skin color. It’s only a matter of time before the wheel spins full circle.

When people meet me and find out I have hearing loss they feel bad for me. Yet my ears have got me where I am today. My first post-college job was directly related to my hearing loss, and I worked with clients with a hearing loss. That lead me to move into elder services since so many have a hearing loss. I can relate to others with a hearing loss on a one-on-one basis. So don’t feel bad for me. I am proud of my ears, even the left one that just decided to kick into tintinitus at this moment (we’ll duke it out later).

This brings me back to the “fix me” epidemic. Doctors take one look at me and they want to find a cure for my ears. We are so concentrated on fixing things to our own vision of perfection that we don’t take the time to pause, step back, and see what that person wants. Maybe the lady in the corner with the big nose likes her nose? Maybe the gentleman in the wheelchair is proud of his accomplishments? Maybe the obese woman enjoys being cuddly? And maybe this author enjoys the fact that her ears are less than perfect? Maybe we all need to find out own realm of “less then perfect”. I can assure you that it is a lot better than mere perfection itself.