The Sound of Cold

Much of Canada and the USA have spent the past week in the deep freeze. From unprecedented snowfalls to dangerously low temperatures, it’s pretty clear that winter is making its presence known. The most common phrase I’ve heard around the city this week is “IT’S SO COLD!”

When running some errands earlier this week, I was thinking about all of the ways we use the word “cold” in the English language. We use it to describe temperatures, temporary illnesses, and even fellow human beings.

Cold is probably one of the only states of being that incorporates all five senses. Because cold – in all its permutations – has a sound.

Sure, you can feel it in the numbness of your fingers as you run from heated vehicle to heated building.

You can taste the sweetness of an ice cream on your tongue.

You can see your breath make clouds in front of your face on the coldest day you can remember.

You can smell the most recent dusting of snow on the ground – or, if you have a cold, you wish you could.

But we often overlook the sound of cold, of coldness.

It’s the sound of packed snow and ice under heavy boots. The wheezing of reluctant automobiles to get moving. Chattering teeth and quick breaths and stomping feet.

If you’re “under the weather” (a term I will investigate at some point) and have a cold, it’s the sound of sniffling and Kleenex and mangled consonants. Of dropped voices and weary tones.

But what about “cold” people? Do they have a telling sound?

I think they do.

It’s the sound of despair. Of idle or indifferent chit-chat that purposefully goes no deeper than the surface. Of prejudice wrapped in the trappings of well-meaning “compliments”.

Would I have noticed these things if I’d focused on my tingling fingers or chattering teeth or stuffy nose or personal frustrations?

Maybe not.

Sometimes, it’s fun to discover – or maybe re-discover – something I hadn’t considered before.

Book Review: The Fault Tree

Who doesn’t like a good mystery? years ago, that’s all I read. One day I realized I was moving away from the genre because I got tired of the shoot-’em-up finales where someone always wound up dead. But years ago, when this book was first released, I read it and loved it because it featured a blind protagonist with a job and everything! I decided recently to re-read and review it on this blog… have my views changed?

 

The Fault Tree

By: Louise Ure

 

For one woman, the dark is a dangerous place to be, and it’s the one place she cannot escape. Arizona auto mechanic Cadence Moran is no stranger to darkness. She was blinded in a horrific car accident eight years ago that also took the life of her three-year-old niece. She knows she was only partially to blame, but that doesn’t make the loss any easier to bear. She’s learned to get by, but there are still painful memories. When she is almost run down by a speeding car on the way home from work, Cadence at first thinks that she is the victim of road rage or a bad driver. But that’s not the case. In fact, she is the only witness to the murder of her elderly neighbor, and now the killer believes that she’s seen the getaway car. Louise Ure paints the glare of a Southwestern summer with the brush of a blind woman’s darkness in this novel of jeopardy and courage…. and the fine line between them – as Cadence fights to stop a killer she can’t see.

 

(Second) First Impressions

 

The first thing I noticed was that this book had no cheesy title about sight, darkness, or vision. Most books that have blind protagonists fall into cliched titles like this, I was thrilled that Louise Ure chose to forego this. Instead, she uses the “Fault Tree” to symbolize guilt, punishment (by oneself or others) and pennence. The second was the fact that Cadence is a tough-talking blind woman with an unconventional job as a car mechanic. The third was the fact that she truly hadn’t come to terms with her blindness.

 

Word Pictures

 

Louise Ure paints verbal word pictures of the Arizona desert. It’s rugged, beautiful, harsh landscapes are described in ways that engage all of the senses, from the prickly cactus to the sounds of the night to the desert heat. Part of this, I am sure, was to get inside of Cadence’s head; partly, I am also sure, because this author loves this land.

 

Cadence and Discord

 

I’ve written above about how I love Cadence’s unconventional job. As a blind car mechanic, she doesn’t fall into a stereotypical job, and she’s a true part of the team at the shop. She uses her ears to listen for engine troubles, the other guys help her with visual work. Some might take offense to her nickname (“Stick”) and how incredulous the shop owner was when she applied for a job, but it’s a tough industry and it’s painted realisticly. Cadence travels independently, using her other senses to orient herself. She cooks well, labels things, and does other things that blind people all over the world do.  her brother created a special cane for her because she doesn’t like the white ones (this was, again, written at a time before coloured or customized canes were more common), and he takes her flying in an airplane to celebrate her birthday every year (something that comes in handy later).

That being said, I have HUGE problems with Cadence. This book may have been written before the iPhone became mainstream, but computers were definitely in use, and Cadence chooses not to use them. She touches peoples’ faces (sometimes without permission) and doesn’t seem to want anyone else to know that she’s blind. This last point puts her in danger when a killer thinks that she’s seen him leave the scene of a crime.

 

Other Frustrations

 

The heightened-other-senses trope. Can it just die already? Cadence smells things, feels things, hears things, and relies on them too much. Sometimes she’s right and (thankfully) sometimes she realizes that they’re just excess information. But the police either dismiss her outright or they think she’s got super-powers.

About three quarters of the way through the book, we know who the murderer is, and we know why. The last quarter is devoted to the police interviewing neighbors and family, while Cadence finds herself in the crosshairs of a murderer. Cadence shows terrific problem-solving skills to get herself and her niece out of a jam, but some of it stretches credibility.

 

Conclusion

 

It’s not a bad way to spend an afternoon, reading this book. You need to stretch credibility pretty far, but the descriptions of the Arizona summer almost carry this book. I found that Cadence, in particular, frustrated me. She would’ve frustrated me as a headstrong sighted character, too, but as a blind one she just made me want to shake her for making things harder on herself.

2.5/5 stars.

Removing the Bubble Wrap: Freedom to Fail

Tags

, , , ,

When you think of disability, what do you think of? Do you think of struggle, tragedy, inspiration? Do you think of incompetence or hope? Do you feel the overwhelming need to protect people with disabilities from all harm?
None of these – tragedy, protection, inspiration, incompetence – are what disability is about. It’s the only condition that transcends ethnicity, nationality, race, religion, gender, age, sexual orientation or economic status.
Disability IS humanity.
So why do we in the disability community – whether we’re disabled ourselves or are a loved one, teacher, spouse, or caregiver of someone who is – swing to the extremes of over-achievement and low expectations?

Those who know me well (OK, and if I’m honest, even those who don’t) learn pretty quickly that I’m a perfectionist. I like to do things well because I hate backtracking and doing my work over again. I’d like to think I’m more tolerant of the true limitations, weaknesses and eccentricities of those around me than I am of my own, but the jury’s still out on that. This isn’t to say I agree with lazy or apathetic attitudes (I don’t), but I realize we’re not all blessed with the same personality traits, gifts, skills and talents.
But why do we raise or lower the bar only because of disability? How can parents sometimes deliberately make their blind child stand out by not teaching them how to perform basic living tasks? And what makes us, as disabled people, feel the need to do absolutely everything perfectly by ourselves just because it can be done? Why do we believe the lie that we cannot fail at anything? Ever?
I’m currently working in a field that does not come naturally for me. It’s uncomfortable. It’s discouraging sometimes (okay, a lot of times). But in an odd, uncomfortable way, it’s also been the most empowering experience of my life. If one day it reaches the point where it’s not working out, I can honestly say that I threw my whole weight behind it… and I didn’t give up. I’ve been publicly compared to Rocky Balboa, and I wear that badge proudly, with the metaphorical black eye, split lip, and everything.
Why do I do this?
Because far too frequently, I’m not given the chance to succeed or fail on my own merits. I’m either not given an opportunity at all because of the preconceptions of my blindness, or I’m told that any effort I give is good enough. Both are wrong. Often times, people with disabilities are robbed of a crucial part of a growing process because these opportunities are denied us by those who “mean well.” We’re not wrapped in cotton, we’re not precious little beings who need to be patted on the head for every little thing we do that our non-disabled classmates, coworkers, or friends do just because its expected. We’re not achieving something simply because we do it “in spite of” or “because of” our disabilities. We are people, period, and we should be able to embrace our talents, be encouraged to make an effort to expand our horizons, and be met with the inevitable challenge of falling flat on our face sometimes.
So throw away the bubble wrap. We’re going to get hurt sometimes. But look back on your life. Tell me, what are the times you grew the most? Was it the time when things came easy to you? Or the times you looked yourself in the face (metaphorical black eye and split lip and all), squared your shoulders, and told yourself that you’d give it one more try?
Disabled people may need help with some things, with some tasks, with some alternatives. Or we may not. But what we need, more than anything, is the opportunity, on an equal and level playing field, to succeed or fail on our own merits, based on our own personalities, skills, talents and effort. No one should deny anyone else those growing pains and glimmers of hope, and disability doesn’t change that.

2016: The Year of the Marathon

Tags

, , ,

Ah, 2016.

I am SO glad to see the back of you. It’s been a hard year for many, from a surprise American election result to many celebrity deaths to the personal struggles that many (myself included) are facing.

While 2015 was the year a bunch of bad stuff happened, 2016 was the year of holding on, pushing through, and hoping for better things to come. I’ve affectionately dubbed this year “the year of the marathon” – a very very hard marathon.

While you are reading this, I am likely snug under piles of blankets after an evening of celebrating with close friends. This may or may not have included beverages, food, games, laughter, and a fire burning some horrible symbols of this year. But 2016 is now over, and 2017 is beginning.

Fire!

 

This blog has been a repository for some important thought processes. It’s enabled me to get out some frustrations, to let others know they are not alone, to speak some hard truths into the air. I’ve written more about my personal experiences, and I thank you for joining me on this wild ride of a blogging journey. No year on this blog would be complete without looking back on what’s happened before, so here’s a snapshot of what this year has brought:

 

Top 5 Posts

 

Most popular book review: Not if I see you First

Most popular in the “Empowered” series: Elegant Insights

 

Blogging Makes me Stronger… especially with posts like These

 

Part of the joy of being a blogger is the ability to look back over the course of your writing and see how you’ve grown. Many bloggers love it when their posts gain acceptance and popularity, but I find myself challenged by the posts that were hardest to write, or those that were not accepted as widely for a wide variety of reasons. So here are a few posts that have made me grow and have truly changed my perspective on writing or life this year.

  • The post with the content I still fully support, but the title that makes me cringe.
  • I was corrected kindly on my use of language on a popular post from last year.
  • Writing this made me cry… and now that I’m re-reading it… is someone cutting onions in here?
  • Sometimes… it’s all about perspective.
  • is it wrong to have a favorite blog post?

Bring on 2017!

 

I’m so proud of how I have come out stronger in 2016. A part of me wishes it didn’t have to come from necessity, but I’ve learned a lot about writing, myself, and life. Whether it’s running with Jenny in preparation for a 10K, creating pretty beaded things with my hands, career struggles, falling and getting back up again… I’m so ready for 2017 and what it has in store. Who’s with me?

Book Review: The Untold Story of the Talking Book

Tags

, , , ,

I remember taking a road trip nearly 20 years ago and wondering what in the world I would do during the 9 hours I’d spend in transit each way. I visited my father not long before I left, and he handed me three plastic cases from the local public library, each of which contained two or three cassettes. This was my introduction to talking books. Sure, as a child, I had books with songs or sound effects, but so did the neighborhood kids. Braille books were always available, but they were big and bulky and cumbersome to transport – if I finished the volume(s) I brought with me, I could find myself without reading material at all, and bringing more than one or two volumes would take up just as much room as a small suitcase. At eleven or twelve years old, those three plastic cases with their two or three cassette tapes were my entree into the world of a more portable reading solution.
Over the past twenty years, the world of audio books has changed drastically. From those first books – abridged, in my opinion, to their detriment – to the unabridged audio books on tape or CD that became popular (if costly) at the turn of the century, to the repositories of digital downloads for rent or purchase… no one can deny that audio books are here to stay.
When I first discovered Matthew Rubery’s “The Untold Story of the Talking Book” I waited for months to read it. Of course, I listened to it in audio format; it just seemed most appropriate.

 

About the Book

 

Histories of the book often move straight from the codex to the digital screen. Left out of that familiar account is nearly 150 years of audio recordings. Recounting the fascinating history of audio-recorded literature, Matthew Rubery traces the path of innovation from Edison’s recitation of “Mary Had a Little Lamb” for his tinfoil phonograph in 1877 to the first novel-length talking books made for blinded World War I veterans to today’s billion-dollar audiobook industry.
The Untold Story of the Talking Book focuses on the social impact of audiobooks, not just the technological history, in telling a story of surprising and impassioned conflicts: from controversies over which books the Library of Congress selected to become talking books – yes to Kipling, no to Flaubert – to debates about what defines a reader. Delving into the vexed relationship between spoken and printed texts, Rubery argues that storytelling can be just as engaging with the ears as with the eyes and that audiobooks deserve to be taken seriously. They are not mere derivatives of printed books but their own form of entertainment.
We have come a long way from the era of sound recorded on wax cylinders, when people imagined one day hearing entire novels on mini phonographs tucked inside their hats. Rubery tells the untold story of this incredible evolution and, in doing so, breaks from convention by treating audiobooks as a distinctively modern art form that has profoundly influenced the way we read.

 

A Note about Audio

 

Many of my readers access reading material through audio book libraries, whether through their state or federal library for the blind, through their local public library, or through online resources featuring books on CD or digital downloads for rent or purchase. The narrator of Rubery’s book, Jim Dennison, reads the book straight through, with neither dramatic flare nor flat intonation. It was mildly disconcerting listening to such a narrator reading a passage about “How to Read a Talking Book.” But Dennison is a good narrator choice for this book, letting the text stand on its own… and stand, it does.

 

Blindness is Prominent

 

Unlike many authors that include a few token quotes from blind people, Rubery shies away from making them out to be incompetent or demanding or whiny. He describes blind people as having particular needs (inclusion, literacy) and vastly different opinions of what that would look like. Some were portrayed as grateful for any literature at all, while others are more particular about the types of books available. Some wanted to read about those who went through the journey of blindness, while others preferred escapism. This provides a look into blind people as individuals, with different personalities, preferences and expectations. He also describes the challenges of learning braille later in life, or transporting braille volumes for those who read braille, or the limited number of books made available. In addition, he provides compelling scientific evidence (written in an accessible style) that reading with the fingers or the ears uses the same brain activity as reading with the eyes, putting the visually impaired only at a disadvantage to their sighted friends or family due to the lack of access to reading material.

 

Not a Dry (Audio) Book

 

Rubery not only discusses the history of talking books – from their inception to the present – but does so logically and with nuance. From the early days where the hope for talking books was surpassed by the technology available at the time to the present day where almost everyone has some form of talking book somewhere (on their phone, in their car), he takes us on a wild ride. I found myself most interested in the inception of talking book libraries in the 1930s. How were books chosen? Was there censorship involved? Were the blind needing protection from unpleasant topics? Did narration matter? With a finite supply of funds, what would appeal to the widest variety of people? When audio books became more popular, what made some publishers more successful than others? From “public” playing of talking books in one’s living room (a BIG no no!) to the idea that any form of “hearing” books being viewed by society as “lazy”, I found myself wrestling with some of those questions, even as I read an audio book while making dinner or going for a run.

And talking books are constantly changing, even today. Now, books on CD are still available for purchase by consumers and libraries, even as digital repositories are gaining popularity. Some audio books for adults have included (as they did for children all those years ago) sound effects and music to enhance the experience. Rubery provides a compelling case that there is room in the marketplace for audio books as they are, and as they will become in the years ahead.

 

Conclusion

 

A seasoned audio book consumer, I learned a lot from this book. From the little things (like why some libraries for the blind include warnings about violence or strong language in their book descriptions) to the big things (wondering how the printed word became so “sacred” after cultures used oral storytelling for centuries), there is much to take away from this book. Whether you read it with your eyes or your ears, it provides much food for thought and interesting discussion.

4/5 stars.

The Easy Life

Tags

, , , , , ,

One thing I’ve noticed over the years, particularly as it comes to interpersonal dynamics, is the idea that my life with a disability is so hard. I frequently encounter perceptions of strangers that I am unable to cook a meal, hold down a job, or raise a family, all because of my disability. Then there’s the confusion about what disability I actually DO live with every day. I, a blind woman, am perpetually told that I MUST need the elevator, rather than the flight of stairs to which I was asking directions. My friends who are deaf or hard of hearing have frequently told me of their experience of being spoken to in very. slow. and. measured. words – complete with sweeping arm and hand gestures – or having written conversations in what amounts to broken English because of the perception that they do not understand complete sentences. I’ve witnessed a friend in a wheelchair being spoken to like a small child, rather than the competent adult she is, simply because she is seated and therefore shorter than most adults.
Do you know what all this has in common? It’s someone else’s discomfort around disability… and not the challenge of disability itself. Most of us with disabilities have reached a place where the tools of disability are second-nature to us – how to navigate the world, prepare food for ourselves, take care of our bodies. We realize that many people haven’t gone through Disability 101 (a seemingly mandatory course in the school of Disability Acceptance that sometimes takes months, sometimes years to master), and we’re generally understanding of mistakes along the way. What doesn’t seem to make sense to us is the idea that a non-disabled person’s job is to make our life “easier” or “better.” Not only that, but the perception is that it’s up to the non-disabled person to decide what we require – a seat on the bus, a spot closer to the front of the lineup, an elevator instead of stairs – frequently putting us in situations where we have to firmly make our needs known because we were never asked in the first place. This then causes the “well-meaning” non-disabled person to call us ungrateful, rude, abrupt, or pushy for simply asserting our autonomy… because, after all, they “meant well.” We often are forced to have nerves of steel, to bottle up feelings of frustration and anger, not because our disability is so hard, but because it’s so exhausting being used as a “teachable moment“, or having to assert our desires and rights to work and play and access the same facilities that are so often taken for granted.

But you know what/ I’ve discovered? I can have nerves of steel, I can advocate perfectly for myself, I can say all the right things with a perfect tone… and I STILL am misunderstood. I hate that I have to write this, because admitting it means I need something from you. It actually IS your job to help make my life easier, and that of other disabled people in your sphere of influence. But you don’t get to pick and choose what would make our lives easier. In a beautifully eloquent post, my new friend Chris so eloquently wrote about the things that are easy – opening doors, giving us your place in line, offering your seat on the bus. In reference to the big things, the important things, the things that include us in society (work, education, opportunity) “… you’d gladly give me a seat on the bus, but how would you feel giving me a seat on the Board?”

What we want from you takes work on your part… and yet, it, too, is easy. It’s letting go of your perceptions and allowing us to be human beings, with the same hopes and dreams and desires and weaknesses that you have. Would you like to be the only person sitting in the living room during Christmas dinner preparations, twiddling your thumbs, offering to help and being told no, just sit there and look pretty? It happens to disabled family members all the time, and when we attempt to insert ourselves, it becomes an argument that ultimately makes everyone lose. Would you like to be told that you can’t get married to the love of your life? It happens to disabled couples all the time – either due to meddling family members or frustrating bureaucracy. Would you like to be told that your work experience is perfect but then get told that the company hired someone else, but that you’re so “inspirational” for showing up? I have lived this and witnessed this unprofessional attitude over and over again. How about stating a preference for certain activities and being told that it’s “so stereotypical” or too outlandish… for YOU, not for anyone else. Yep… lived that, too.

This is the big stuff, the stuff that makes life textured and complex. It’s frustrating that my own autonomy is so dependent on a non-disabled public listening and learning and letting go of their preconceptions. It’s frustrating that being treated with dignity and autonomy and respect, being provided with helpful information the first time we ask, being listened to when we politely self-advocate is the very rare exception to the rule. I’ve been offered more bus seats than I believe I’ve been thoughtfully considered for jobs for which I am qualified. I’ve been grabbed to direct me more often than I’ve been told that my husband and I are a cute couple just because we love each other, even as the ring on my finger is immediately obvious. I’ve been offered assistance and guidance for which I am extremely grateful, but I’ve also had it foisted on me. The little things do make our lives easier, and they do matter, and they matter a lot. But the big things – employment, education, love, autonomy, respect, consent – matter more, and those things truly do make our lives easier.

You’d gladly give me a seat on the bus, but how would you feel giving me a spot in your kitchen, an important position in your office, an evening babysitting your children, an opportunity where my skills and experience can stand on their own, a day at the altar… or a seat on the board?

Book Review: The Reluctant Midwife

Tags

, , , , ,

There are three topics that will almost always make me want to pick up a book: the Great Depression, midwifery, and Appalachia. Put them together, and I HAD to read Patricia Harman’s Hope River novels: The Midwife of Hope River (TMOHR) and The Reluctant Midwife (TRM). While TMOHR, in this reader’s opinion, has much more charm and depth, I am reviewing TRM due to its themes of disability that run through much of the novel.

 

About the Book

The Great Depression has hit West Virginia hard. Men are out of work; women struggle to feed hungry children. Luckily, Nurse Becky Myers has returned to care for them. While she can handle most situations, Becky is still uneasy helping women deliver their babies. For these mothers-to-be, she relies on an experienced midwife, her dear friend Patience Murphy.
Though she is happy to be back in Hope River, time and experience have tempered Becky’s cheerfulness-as tragedy has destroyed the vibrant spirit of her former employer Dr Isaac Blum, who has accompanied her. Patience too has changed. Married and expecting a baby herself, she is relying on Becky to keep the mothers of Hope River safe.
But becoming a midwife and ushering precious new life into the world is not Becky’s only challenge. Her skills and courage will be tested when a calamitous forest fire blazes through a Civilian Conservation Corps camp. And she must find a way to bring Isaac back to life and rediscover the hope they both need to go on.

 

A note about Audio

As many readers of this blog read via audiobook, I will say that the narrator, Heather Henderson, is competent but not stellar. There are portions that would have been conveyed more clearly with a second narrator; they are written in first-person point of view, like the majority of the book in Becky’s POV, but Henderson’s voice does not change enough to make this distinct shift. It’s not a bad audiobook, but these are quibbles to keep in mind.

 

Disability: Center Stage

TRM visits many characters first introduced in TMOHR. It is probably best that TMOHR is read first, but Harman deftly describes what the reader may have missed. In theory, four years have passed since the end of TMOHR, but so much has stayed the same, even as a couple of characters have married or moved on. There are several physically disabled characters in this book (TRM), many of them mothers or women who wish to become mothers, who had brief side roles in TMOHR. This is a terrific departure from most fiction, which seems to portray disabled characters as having no sexuality. What’s also refreshing is that no one seems to bat an eye at Lily, a blind woman (who possesses angelic qualities and finely-tuned senses of hearing and smell – with which I have my own quibbles), raising a child with her husband. Ideally, Harman could have further explored this avenue of Lily’s life – as it’s not uncommon for parents with disabilities to have to prove their fitness as parents – particularly since Lily interacts frequently with Becky Myers, the nurse/midwife. Another character, paralyzed due to polio, uses a wheelchair to navigate her home, and consults Becky when she believes she is pregnant. Again, no one seems to think twice about her carrying a child due to her disability (though there are concerns due to the polio itself and a painful loss of a child years ago). Spouses and employers seem to want to make accommodations as needed for loved ones or employees to maintain their dignity and independence – wider doorways in the home, lower countertops and workbenches, setting up work projects for a blind spouse on bed rest. Again, this is a refreshing dip of the toes in the water of disability, dignity, sexuality, and parenthood, which could have made this book thoroughly enjoyable, but…

 

Some Big problems

Maybe it was a reflection of the times. Maybe it was the author’s point of view. Maybe it was an ending that was too neat and tidy. But Becky Myers herself was truly unlikable and seemed to lack the compassion of those in the helping professions. She worries about everything and is truly inexperienced as a midwife, something I found bizarre for a woman who ran a women’s health clinic for years. When the doctor she’s been assisting for years develops disabilities of his own, she totes him around like a pet, speaks to him like a dog, resents his presence, presumes him incompetent… Becky may have nursing training, but either has no compassion for some of those in her care or hasn’t developed the skills to avoid burnout. Words like “cripple”, “wheelchair bound”, and “sightless” are used to describe the townspeople with disabilities.

Dr. Blum begins the book unable to care at all for himself, but slowly gains independence once others presume his competence. He poignantly describes having words to say but being frequently unable to express them verbally. But he himself is manipulative, knowing he can perform personal care tasks for himself but allowing Becky to do them for him, reads Becky’s journal without her permission or consent. Even so, he performs complex surgery when pressed into service and recovers too neatly and tidily, feeding the idea that illness needs to be cured completely in order to be happy…

 

Conclusion

TRM lacks the depth, humour and charm of TMOHR. Even so, it takes some important steps in the right direction, making physical disability intersect sexuality and parenthood. But it missteps in some painful, ableist ways as well. It’s worth a read particularly if you like TMOHR (which is warm and poignant a la “Call the Midwife”), but it’s worth noting some concerns about mental illness or other disabilities whose cause and symptoms are unknown or unpredictable. One can argue, maybe even successfully, that the language and attitudes were products of that particular time and place, but that can only take one so far. Some of the words, attitudes and ideas still persist today – even if beneath the surface – and it’s important to acknowledge that.

3/5 stars.

So… very… Tired…

Tags

, , , ,

My wonderful readers, you have been so patient with me. The past month and a half has been exhausting, exhillerating, frustrating, encouraging, and probably the most conflicted six weeks of my life. You have, without knowing it, given me the space I needed in order to get back in the saddle again… so here I am. I thank you in advance for your continued patience, because I am just… so… tired.

I’m tired of having to convince the general public that I deserve bodily autonomy.

I’m tired of having to convince potential employers that workplace accommodations are in my hands, they have to do NOTHING but respect me and train me the way they would a sighted employee.

I’m tired of being talked down to like I’m a child.

I’m tired of seeing organizations (albeit well-meaning ones) publish books about “how to talk” to me.

I’m tired of feeling like I am fighting all the time, but I feel like NOT fighting is giving up on myself.

And, most of all…

I am tired of blaming myself for being human, for being imperfect, for being angry and frustrated and exhausted.

I am just… so… very… tired.

Women On The Move: BlindBeader

A few months ago I profiled Steph, owner/operator/inspiration of Abigail Style. She asked me to contribute a post on her blog, so here it is! Thanks, Steph, for the opportunity to share a day in the life with you… thankfully, it was a good one!

Bold Blind Beauty

Perfection Doesn’t Make a Day Perfect

Intro: It’s been a while since I’ve posted a Women on the Move article and it gives me great pleasure to introduce you to a fabulous young woman, who among other things is a wife, animal lover, athlete, bookworm, jewelry designer, musician, and writer. Today, BlindBeader—as she likes to be called—gives us a glimpse into ‘a day in the life’ of one blind woman. Enjoy!

Blind Beader and her guide dog, Jenny at a pier in New York BlindBeader and Jenny in New York City

I’m curled up under blankets, snuggling with my guide dog and one of my cats. The two of them are besties, but it is uncommon for them to simply rest in shared space, so I’m thoroughly enjoying the moment.

It’s been a long day, but a good one, and I’m just resting in the knowledge that Perfect days do exist. It’s not that my day went without a hitch – in fact…

View original post 817 more words

Book Review: Not Fade Away

Tags

, ,

Years ago, I read “Not Fade Away” by Rebecca Alexander, who most recently has (among many other things) been part of the Foundation Fighting Blindness’ controversial “How Eye See It” campaign. I found her book compulsively readable, in a chatty, conversational style, even as I grew frustrated with her desire or need to hide her deafness or blindness or, alternatively, push herself SO hard. Without taking away from her own lived experiences (of which she is incredibly self-aware), I wish (and maybe she does in hindsight) that she’d made life easier on herself by reaching a place of acceptance earlier.

Last year, I introduced you to Tracy in my post written by deaf-blind women. She shares my overall impressions of the book, as well as some of Rebecca’s own lived experiences. She graciously allowed me to share her own review of “Not Fade Away.” Take it away, Tracy!

 

Tracy’s Review

“Not Fade Away” – about a woman slowly losing her hearing and vision – may read as inspirational to most people, but for me as a deafblind woman it just irritated me.
We have shared experiences in deafblindness (in her later years after she finally accepted it). We both have trouble hearing and seeing in dark, noisy places; we were reluctant to start using a white cane; we both have a cochlear implant; and we both have similar reactions from the public such as asking if we need a wheelchair. We both are uncomfortable about being called someone’s “inspiration” just for dealing with our everyday lives. I also connected with the author in her coping skills as a child. We both believed we weren’t good enough for our parents, escaped a lot into imaginary worlds in our heads, and made up stories to try and get other kids to like us.
The book is described as “a memoir of senses lost and found”, yet it reads like a diary in mixed chronological order of memories of her parents’ divorce, her brother’s mental illness, her eating disorder, her fight with self-image and such. Much of the reference to her Usher’s Syndrome was dedicated to how much she hated and all the attempts to deny it even when it was obvious to those around her.
I get that she doesn’t want her deafblindness to be at the forefront of everything, but denying that she has it is like denying she has a nose on her face – almost everyone can see that she does. She could save a lot of frustration by being upfront about it.
Maybe it’s my background of already been born deafblind and not having to go through the transitional period of losing senses that made for my jaded view of this book. Maybe it’s my nonchalant attitude on life. I’m not afraid of letting people know about my deafblindness and what I need for accommodations. This is who I am, it’s a part of me and if you don’t like it, fine, go about your own life, your loss not mine.
Even though the author never displayed a “victim mentality” that some people develop after a disability diagnosis, she went the opposite way of being an over-achiever so that when people find out she’s losing her hearing and sight that they’ll like her anyway.
I just wanted to shake her and scream “there’s nothing wrong with being deafblind! You are still going to be you and you can still do everything and you have done a lot more than most able-bodied people! So just ACCEPT it! Who gives a crap what others think or how they view you!”
She states in a chapter in the middle of the book “I have a true understanding of what it means to take each day as it comes, with its joys and sorrows and complications, and to make the most of it.” This irritated me because I felt that she never truly did learn this, as later chapters still show her denying and excusing her losing vision and hearing. She also said in a chapter near the end, “I was only going to make life harder on myself by not accepting help.” It would have made her life a lot easier if she’d accepted this 50 chapters ago.
We all know getting a “terminal” diagnosis is dreadful and life-changing. Everyone would go through the different stages of grief of denial, anger, bargaining, depression and acceptance. I just felt that the author spent about 3/4th of the book in denial.
This book just did nothing but aggravate me and left me confused – why couldn’t she just get around to accepting it?

 

Tracy and I both give this book a 3/5-star rating.