Book Review: Girl, Stolen

It’s been a while since I read a novel featuring a blind protagonist. What with the holidays and busy work schedule and a TBR list that would take years to complete if I did nothing but read. But I promised to keep book reviews coming on this blog, and a short novel like “Girl, Stolen” seemed like a perfect place to get back into the swing of things.

Girl, Stolen

By: April Henry

 

Sixteen-year-old Cheyenne Wilder is sleeping in the back of a car while her mom fills her prescription for antibiotics. Before Cheyenne realizes what’s happening, their car is being stolen.
Griffin hadn’t meant to kidnap Cheyenne, but once his dad finds out that Cheyennes father is the president of a powerful corporation, everything changes – now there’s a reason to keep her.
How will Cheyenne survive this nightmare? Because she’s not only sick with pneumonia – she’s also blind.

 

Cheyenne

 

Cheyenne Wilder is a young woman who went blind in the same accident that killed her mother. The author does a generally admirable job of making her neither helpless and dependent nor otherworldly capable. She’s plucky and resourceful in some ways, frustrated and angry in others. There are far too many instances where Cheyenne fills the role of “helpful educator” – far too many to just be lulling Griffin into a false sense of security – but there are also poignant depictions of grief, frustration, and fear.

Cheyenne’s pneumonia seems to add an additional complication, until it’s dropped for reasons unknown (it doesn’t seem to really affect her mental capacity). As a blind reader, though, I’m glad the author chose to make Cheyenne emotionally and nuanced, with an additional “strike against” thrown in for good measure.

 

Some Plot Holes

 

It’s clear that April Henry did a lot of research on blind people. The skills many blind people learn – orientation and mobility, computer usage, life skills – are touched on with fairly good accuracy (though I wonder at the likelihood of a wealthy family sending a recently blinded teenage girl to train for these skills with middle-aged men). The stages of denial, grief, and frustration are well-drawn, but Griffin seemed too gullible and Cheyenne too resourceful given her weakened physical state. Also, the “bad guys” (with the exception of griffin) are drawn as big, angry and/or unintelligent, which made it hard for me to take them seriously. Also, to major corporations have presidents? I thought they had CEOS.

 

Light Read

 

There’s not a lot of heavy stuff in this book. In fact, there’s a lot more levity than expected. This is both a strength and a weakness. Most characters – human and canine – don’t act particularly believably in many spots, even while there are very poignant accurate portrayals.

 

Conclusion

 

It’s not a bad way to spend a few hours with Cheyenne and Griffin. Things tie up a little too neatly, but I found myself flipping through the pages. A little more research and less “education” might have made this a better read. But this reader found this book at just the right time.

3/5 stars.

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Is This OK With You?

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You’re in a party of six who walks in to a restaurant.
Everyone else is directly addressed,
But when it’s time to place your order, your companion is asked what you would like.
Is this OK with you?

You go to a big sporting or concert event;
There are only a handful of seats available to you, even if the rest of the venue has plenty of tickets for sale.
If you’re really unlucky, the only seats you can get are ones where you can’t see clearly or hear well.
You’re told that these are the only seats specially designed for people like you.
Is this OK with you?

You sign up for a course in an activity you enjoy,
And you are told it’s just “too hard” or “too complicated” to accommodate your participation.
But no one asked what, if any, accommodations are necessary.
Is this OK with you?

You apply for a job with a perfect resume, and get called for an interview.
Your qualifications, skills, and education are briefly discussed, and the rest of the interview feels like you’re having to defend yourself.
You have done nothing wrong, but you walk out the door feeling like you’ve been judged and found guilty.
You get a rejection email or phone call, if you’re lucky; you hear nothing if you’re not.
And sometimes, you’re told it’s because you’re just too much of a hassle.
They don’t put it that way, but that’s what the silences say between their words.
Is this OK with you?

You’re told that you’re not working/able to work because you’re just not trying hard enough.
You don’t have the heart to reply that you’ve had three interviews this month that went badly.
Or that you “wasted your time” by taking care of yourself and your family, volunteering in your community, attending school…
But you should just “keep on trucking” and “keep your chin up,” because that perfect job will come along.
And if it doesn’t, it must be something you’re doing, and you’re “a drain on the system.”
Is this OK with you?

You’re told that your symptoms are all in your head,
That you should just think positively, or do more yoga, or eat better,
And then you’ll be ALL right.
Is this OK with you?

You walk in to a grocery store to buy a quart of milk,
And are loudly demanded to show your ID, leave your medical equipment outside, or get out of the store.
You’re the only person being singled out like this.
Is this OK with you?

Someone stops you on the street and asks if they can pray for you.
They don’t ask what you need or want prayer for; they just pray for the most immediately obvious things.
Then they go on their merry way, asking you to be blessed, and you go your way and feel empty inside.
Is this OK with you?

You’re on your way to run an errand and are stopped by a stranger.
You’re told how inspirational you are for getting out of bed in the morning,
That they would kill themselves if they lived your life.
Is this OK with you?

You’re told that you can do anything you set your mind to.
Except this, and that, and that other thing.
Those would be too hard for you.
No one asked what you thought.
Is this OK with you?

At family gatherings, you’re told that it’s a good thing you are single.
If you have a child, it might “turn out like you.”
If you don’t want children, it’s “completely understandable.”
But when are your siblings/cousins marrying and having babies?
Is this OK with you?

You’re told to accept any attention you get,
Even if it’s negative, detrimental, or not desired.

Even if it’s against all social propriety, against your own wishes… people just “want to help” and you need to suck it up and let them feel good about themselves.
You should be grateful people want to connect with you at all.
Is this OK with you?

You’re told not to let the “little things” get to you,
To give people the benefit of the doubt because they just don’t know how to talk to you.
Is this OK with you?

I – and people I know and love – have lived all of these scenarios and more.
Some of us call ourselves “disabled people.”
Others prefer to be called “people with disabilities.”
even in this small way, we are frequently told how we should refer to ourselves.
And – in all these ways big and small – it’s not OK with us.
It’s not OK with me.

Book Review: Sensing the Rhythm

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I first heard the name of Mandy Harvey when I read and reviewed Erik Weihenmayer’s latest autobiography, No Barriers. I first heard her sing a couple of months later in a heart-stopping video performance on America’s Got Talent. When I discovered not long afterward that she had written an autobiography of her own, I scooped it up quickly. As a disabled person myself, and an (albeit out-of-practice) musician, I was interested to hear the story behind the voice and the performance that made me stop and take immediate notice.

Sensing the Rhythm

Finding My Voice in a World Without Sound

By: Mandy Harvey and Mark Attberry

 

The inspiring true story of Mandy Harvey—a young woman who became deaf at age nineteen while pursuing a degree in music—and how she overcame adversity
and found the courage to live out her dreams.

When Mandy Harvey began her freshman year at Colorado State University, she could see her future coming together right before her eyes. A gifted musician
with perfect pitch, she planned to get a music degree and pursue a career doing what she loved. But less than two months into her first semester, she noticed
she was having trouble hearing her professors. In a matter of months, Mandy was profoundly deaf.

With her dreams so completely crushed, Mandy dropped out of college and suffered a year of severe depression. But one day, things changed. Mandy’s father
asked her to join him in their once favorite pastime—recording music together—and the result was stunningly beautiful. Mandy soon learned to sense the
vibrations of the music through her bare feet on a stage floor and to watch visual cues from her live accompaniment. The result was that she now sings
on key, on beat, and in time, performing jazz, ballads, and sultry blues around the country.

Full of inspiring wisdom and honest advice, Sensing the Rhythm is a deeply moving story about Mandy’s journey through profound loss, how she found hope
and meaning in the face of adversity, and how she discovered a new sense of passion and joy.

 

Initial Impressions

 

I chose to listen to this book in audio format, narrated by Mandy herself. Mandy’s narration lends additional warmth to her breezy, accessible style of writing. I was immediately transported to an unforgetable performance where, without words, all musicians knew exactly where to be and what to do.

We are taken on Mandy’s journey with her – from the rapid decrease in her hearing to her time of depression to her discovery that she could still sense the rhythm of music. I laughed and cried with Mandy, and some portions of her journey really made me think. Even though the publisher’s summary talks a lot about inspiration and overcoming adversity, I found this short book more approachable and relatable than I expected to.

At the end of each chapter, there’s a section called “Making Sense of Your Rhythm”, which I personally found repetative and the only real drawback to the book. These sections summarize – and sometimes re-state word-for-word – portions of the chapter that has just been read. There are some questions to ponder, but overall I didn’t find those portions useful (though perhaps a print or eBook would include space to write down reflections and answer additional questions).

 

Disability Identity

 

Mandy chooses to communicate using sign language, something she thought was important to use during her performance linked above. Her deafness is as much as part of herself as her musicianship, though she’s received threats from some in the deaf community. Her thoughts on using identity-first language – referring to someone as a “woman” or a “sister” or a “colleague” and then only including the disability identifier if it’s relevant to the discussion – almost completely changes the person/identity-first language debate on its head. Months later, I am will pondering the implications of including disability descriptors of people in my life in this way.

And yet I found myself feeling a complicated sense of sorrow and frustration when Mandy relates her experiences in early college as her hearing loss was progressing. She asked for an accommodation to learn an assignment and was denied that request. When students stood up for her, she admitted feeling like a burden, feeling uncomfortable, feeling like her hearing loss made her stand out. I found myself relating to and frustrated by her feelings of her disability experience and the reactions of those around her.

 

More than Disability

 

Yes, Mandy is deaf, and yes, she’s a musician. But she has some insights about life that are not exclusively disability-related. In particular, I found her formula for success to be an incredibly insightful look at talent and determination. Her hard-won insights on supporting a loved one through a life-changing event – based on what she found helpful and what she didn’t – may not be revolutionary, but they are told in a gentle and powerful way.

Mandy neither makes herself out to be a saint or a martyr, but as a woman who has made mistakes and chosen to learn from them. There are some portions of her book that some might find preachy (Mandy is a born-again Christian), but they are generally interwoven with her own lived experiences, adding to their tapestry rather than jutting out at odd angles.

 

Conclusion

 

I usually prefer longer books and getting to know characters and real people. But Sensing the Rhythm is a short tome that I’m glad I picked up. I personally would have liked to hear more about Mandy’s band, how she works with them, more about recording music as well as performing. And the “Sensing your Rhythm” portions don’t detract from the book, but they don’t add to it either.

It’s not a literary masterpiece, but it can be as easy or as profound as you, the reader, make it out to be.

Much like all of us.

 

4/5 stars.

To the Parents of Blind Children, Part 2: Your Child Deserves More

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I stated in my previous post that I am not a parent. I will probably never know first-hand what challenges a parent faces. Throw an unexpected disability into the mix, and I can honestly say I have no idea what decisions I would reach or mistakes I would make. We are all human; mistakes are inevitable. But they don’t have to determine the course of a child’s life.

I’m a blind adult who has experienced the joy of being a child, whose parents truly did some amazing things to make sure I was as happy, healthy, and autonomous as possible. It wasn’t until I started high school that I began to realize that not all of my peers – especially my blind friends – were given such opportunities and freedoms. As I grew older – through my twenties and now that I’m in my thirties – I frequently notice a truly stifling dynamic toward blind children by their parents. Will some parents be helicopter parents anyway? Absolutely! But when there’s a clear difference in how siblings are treated along disability lines – something I observe regularly – it becomes abundantly clear that blind children are frequently short-changed.

It doesn’t have to be this way. Your blind child deserves so much more…

 

Your Child Deserves more than A Diagnosis

A diagnosis of vision loss can be devastating, or it can offer a sense of relief. it should neither be hidden from your child nor the focal point of everything they do. I have several friends who struggled so unnecessarily as adults because their parents chose to withhold their child’s vision-loss prognosis from them altogether or denied their child’s expressions of frustration about not being able to process visual information. Others struggled to learn the life skills their siblings learned by imitation because their parents feared their lack of vision would make the tasks impossible. Many have expressed to me that they would have felt less alone if their parents had chosen to be open about their medical information, and they would’ve felt more secure in the world if they didn’t have to learn basic tasks as an adult because their parents were so “stuck” on their blindness. Growing up is enough of a challenge without having to overcome years of denial and lowered expectations.

Vision impairment or blindness is not the only aspect of your child’s growth and development. Just as your height or race or gender is one aspect to your humanity, your child’s blindness is only one lens through which they experience the world.

Your Child Deserves More than Hope for a Cure

I’m one of those people who would not want a cure for blindness if such an opportunity presented itself. Even with my limited vision, I find visual input extremely overwhelming, and the idea that I am broken because my eyes are is truly bizarre to me. And yet I truly respect the desire that some have to regain the use of vision they or their children have lost, or halt the progression of the deterioration of their visual world. Ultimately, the hope for restoring or improving vision should never be at the expense of showing a child how to live confidently and successfully in the here and now; in no way are the two mutually exclusive. Just as a child with diabetes can hope for advances in science and technology to improve their condition and the care of it as they grow older, they still have to learn to monitor what they eat, be aware of their body’s signs of illness, and advocate for what they need if they need to, a blind child can do the same. Why does blindness sometimes facilitate hope for the future at the expense of the present?

But some parents (and medical communities) look into the future and see only fear. The fear of blindness itself. Some fear blindness SO much that they gamble with their child’s life.

One cause of blindness in children is retinoblastoma, a malignant tumour that begins in the retina. Because the tumour can spread to other parts of the body, it is frequently necessary to choose between radiation and the removal one or both eyes when the child is very young. Some parents – on the advice of a medical community that frequently view life without vision is worse than no life at all – choose to take drastic measures to save their child’s vision rather than their life. Is vision really worth more than a full and complicated and messy life? More than a life like the one that you live?

And yet, there are some parents who I can only applaud. They are choosing to treat their daughter’s retinoblastoma with a revolutionary treatment. I not only admire them for their hope and belief in the progress of medical treatments, but because they want to save their daughter’s life and her vision (because, at this point, her vision seems unaffected by the tumor). A quote from her mother in the above article has stayed with me since I read it: “I know that Dania will be successful in whatever she does and if she does have her eye or if she doesn’t have her eye, I think she’ll be fine.”

She will be fine.

Vision is never ever ever worth more than a life.

 

Your Child Deserves More than Isolation

Sure, some kids are introverts, some are extroverts. I happen to be an incredibly outgoing introvert, which confuses people on many levels; it wasn’t until I was in my mid-twenties that I truly began to embrace my introverted personality, and I find myself better for it. These days, I’m an adult, and I choose when and with whom and for how long I interact. But when I was growing up, I was greatly encouraged to be social, and there were many neighborhood children who were willing to hang out with me. Sure, I didn’t “get” cartoons – even as a child, my idea of “entertaining” TV was an episode of “Jeopardy!” with my parents before bed – but when I had more vision I was more than content to rollerblade or ride my bike or traipse around the neighborhood with my friends. When it came to school, I was content to do my own thing on the playground – sometimes with other kids, sometimes without – but I didn’t make a solid group of friends until high school. I hung out with the science nerds who were more content to get good grades than to party on the weekends, and that suited me fine.

But even as a teenager I noticed how frequently my other blind friends isolated themselves behind books and games and computer screens – not necessarily because they wanted to, but because they felt too awkward to approach their peers (and, in Canada, most of your peers are people who can see). Sure, even the most outgoing person faces insecurity about how they are perceived, and I would never presume that unhealthy or bad “friendships” are better than no friendships at all. But many of my blind friends were left on their own in their rooms to read or chat online or otherwise isolate themselves while their siblings were encouraged or supported to go out there and hang out with their peers. As an only child who saw many sibling dynamics play out, those between my blind friends and their sighted siblings – and how their parents frequently treated their social development – stood out in stark contrast to me.

Of course, social development can never and should never be forced. I hated it when a teacher singled me out (on the rare occasions they did) for other students to work or play with me. My friend Meagan has poignantly described the dynamic she faced as an introvert who was strongly encouraged to go make new friends, and I would never belittle “Internet Friendship“. But she also describes the socially awkward behaviors that continue into adulthood when there is no sense of meaningful communication of any type with a peer group. And all children deserve the opportunity to socialize naturally (not forcibly) with their peers.

 

Your Child Deserves More than Learned Helplessness

I wrote above about how I have witnessed a troubling pattern of parents doing everything for their blind child. Of course, there is always a learning curve to mastering new tasks  – whether you’re sighted or blind, a child or an adult – but never giving a child the freedom to succeed or fail doesn’t enable them to learn the skills they will need for adulthood. My friend Holly wrote about parents being completely unaware of the advances in technology that have enabled blind people to live, study and work independently and effectively. Of course, not everyone is going to be aware of everything out there, and not all technology is great, but even having an awareness of what’s on the market can greatly increase the future prospects for your child. But a more troubling conversation was detailed in Holly’s post, particularly as it pertains to parents cleaning up after their blind child, even going so far as to enable their child to spit toothpaste into the bathtub instead of the sink because it would be easier to clean. When it was pointed out by blind adults that such behavior is not only socially inappropriate, but sets a very low expectation for a blind child, there was a tone of defensiveness so strong that some chose to leave the conversation altogether.

OK, so you don’t go that far… but how often do you swoop in at the first sign of your blind child struggling with a skill or task? Do you tell them you don’t want them to cook in your kitchen, travel independently, or try a new hobby they might enjoy? I know many blind children – who are now blind young adults – who still struggle to learn new skills or try new things because they spent so many years being told “no”… for no other reason than because they are blind. Some teach themselves how to live independently, others learn these skills at a training program far away from home, and still others simply allow this dynamic to continue.

It should never be this way.

 

Conclusion

Do you hope for good things for your sighted children? An education, a place of their own, a life partner, children, travel, a good job, a healthy social life, hobbies they enjoy? Most parents do. Any and all of these things are possible for your blind child as well, and you have the power to either stifle them or feed them until they grow into beautiful fruition.

There are many blind adults who have come from environments like mine, like Meagan’s, like Holly’s, and those that have struggled with the family dynamics I’ve listed above. Many of us are open to talk, to listen, to answer questions. Some of us may know what it’s like to be a parent; some of us don’t. But we know what it’s like to be blind, and many of us would be open to helping you help your blind child flourish and succeed.

To the Parents of Blind Children, Part 1: You have SO much Power

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Parenthood is a joy and a challenge for most parents. You question yourself, second-guess decisions, worry about your children, and hope that they grow up to be happy, healthy, productive members of society. But what happens if your child is born blind, or becomes blind due to illness or accident, or whose vision decreases over time? Do those worries disappear or amplify? Do those hopes diminish?
I may not be a parent, but I’ve been the child of parents. You may not be blind or know blindness firsthand, but I have, and so have many others who have contributed ideas to this post and the ones that will follow in the coming weeks. You may only recently have received news that your child won’t see the way “typical” children do. You may have fought for a diagnosis or it may have been immediately apparent. Whatever the case, you, as a parent, have both the responsibility and the power to teach your blind child ways to adapt to a world that doesn’t keep them in mind.

 

You have the Power to Educate

 

Education is a hot-button topic for many parents. Do you send your child to a public or private school? Is homeschooling the best option? If your child is blind, will they receive an equal education at a school for the blind or at a mainstream school? Many parents of blind children emphasize academics; they realize that blindness does not in and of itself impair intellect, and greatly encourage academic pursuits. Most encourage braille literacy, with which I am in full agreement. As important as education is, it’s also important to listen to your child, to learn their gifts and talents and skills, and not push academia for its own sake. Maybe they want to work with their hands, to become a stay-at-home parent, to create or invent things. If you have sighted children that have the space and encouragement to try new things, to succeed and fail, then don’t deny this to your blind child. Education is important, but higher education is not the only way by which your blind or visually impaired child can succeed.

 

You have the Power to Empower

 

Education itself is not limited to the classroom. Children frequently want to explore their surroundings, to learn new skills, to ask questions and get answers. Often times, it’s parents that quell a child’s curiosity because something’s too “dangerous.” Of course this happens with sighted children, too, and of course some activities are dangerous or scary and should be approached cautiously. But experiencing new things is scary for everyone, sighted or blind, and sometimes we do those scary things anyway. You worry about your sighted child riding his bike for the first time, or taking their driving test. Of course you worry when children are young and impulsive and inquisitive. It’s only natural. But blindness doesn’t make a child more of a safety risk than sighted children. You can empower your blind child by harnessing his or her curiosity in productive ways, encouraging them to dream, and letting them make mistakes without swooping in at the first sign of trouble. You, parents, have the power to clip your child’s wings or let them fly.

 

You have the Power to Inspire

 

When you think of famous blind people, who comes to mind? Stevie Wonder and Ray Charles both made enormous contributions to the music world. Louis Braille invented the braille code, which allows blind people all over the world to read and write in a wide variety of languages.

But beyond them, blind people have always lived among us. Would you be surprised to know that the inventor of cruise control was blind?

Many of these stories have in common a determined parent (sometimes more than one) who encouraged their child to learn, to dream, to work hard, to persevere.

Blind people are currently holding down successful jobs, serving in political office, raising families, running businesses, volunteering in their communities, climbing mountains… the list is endless. There are blind people in your own community who are shattering stereotypes, working publicly or behind the scenes to make the world a more accessible and inclusive place. And you have the power to encourage your own blind child’s hopes for the future and the world in which they will grow up and live.

 

You have the Power to Foster Independence

 

Most blind or visually impaired children are provided with aides to daily living by state, provincial or federal sources. Whether this independence comes in the form of a white cane or a monocular, or later a guide dog, it’s your blind child’s ticket to independence and self-sufficiency.

Not only that, but skills like cooking and cleaning are essential to being the member of any household. Sighted children model what their parents do; blind children need that instruction as well, because most will want to live independently. Not all will be great gourmet cooks or the best housekeepers in the world, but it’s important that they know the skills. And if you can teach and model for a blind child’s sighted sibling, you should do no less for your blind child. Siblings notice inequality, and rightfully would be frustrated at lowered expectations for their sibling. If you’re unsure where to turn, there are blindness organizations with trained staff to help; if those services don’t work for you or your family, the Internet and social media have opened up a wide variety of tutorials and social networks and can get you in touch with blind people themselves who’ve learned to live life non-visually.

 

You Have the Power to Advocate

 

As your child grows up, they will likely encounter misunderstanding, inequality, and ableism. When your child is too young to understand these things or express their feelings articulately, it’s up to you to include them in school or church or extracurricular activities. As they grow older, they will begin to model advocacy from what you taught them, and if you teach them both in word and example that they are equally as gifted, valued, and important – with the responsibilities that accompany that knowledge – as their sighted siblings, classmates and friends, the more they will believe it themselves. They will then go on to advocate competently and articulately for their needs as they continue on their life’s journey.

 

You have all of this power! The power to shape your blind child’s life just as you would have if he or she were sighted. My next post will address what is sometimes accepted as a cheap substitute for this power.

 

I would love to hear your stories about how you were raised as a blind child. Or, if you are the parent of a blind child or children, what do you wish you had been told at the beginning of this journey? Do you wish your relationship with your parents/child(ren) (as applicable) were different? Parents, are you using the power you’ve been given as a parent, or are you trading it in for a consolation prize? As a blind child, did your parents empower you, or did you need to fend for and empower yourself?

Your stories are important – as parents, as children. Lack of sight does not mean lack of potential, lack of dignity, or lack of worth.

The Intrepid Journey 2018: Preparing by the Seat of My Pants

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A dream of a solo journey through Montana was born while driving down a highway in the summer of 2017, passing cities I thought might be fun. I hadn’t even unpacked my bag from that trip before I started looking up bus routes to make this next trip happen.
Four months later, I’ve waffled almost constantly between excitement, ambivalence, and apprehension. The first thing I booked was my train ticket from Seattle to Whitefish, Montana, splurging on a sleeper car; it seemed like an appropriate celebratory purchase when my work position went from a term contract to a permanent position. Any time I had some extra spending money, I put it into bus tickets – as of this writing, five of them had been booked. My wonderful husband gave me an Alaska Airlines gift card for Christmas, so I’m just waiting for my flight from Edmonton to Seattle to possibly decrease in price; and I’d have no money at all if I booked my flight right now from Denver back home. But that will come.
As for accommodation, my goal is to meet people, which pretty much rules out the segregation and sterility of hotels. An accommodating AirBNB host in Cheyenne put up no resistance regarding Jenny, though he did express concern regarding me navigating his basement steps (and lest anyone think it’s a blind thing, he posted about it in his listing itself, so I doubt it). A friend in Denver has offered to put me up for a weekend (though I won’t identify them at this point). I snapped up pet-friendly accommodations within my (admittedly cheap) budget in Seattle, Helena and Great Falls, with hosts who appear to be more than welcoming. Just this morning, I booked my one night in a hostel in Whitefish – who can go wrong staying in a spot with storage for bags and a vegetarian restaurant and smoothie bar?
And then there’s Missoula.
I’ve had service dog refusals before, but I’ve had two notable AirBNB hosts in Missoula who have been incredibly unwelcoming and rude (not to mention discriminatory and in violation of AirBNB’s inclusion policy regarding assistance animals). Correspondence with AirBNB on this issue has given me little more than reiterations of the policies I already know.

So I promised myself – both as a way to save my pennies for now and a way to preserve my own mental well-being – to put my 25-AirBNB-listing Missoula wish list (and my smaller ones for Bozeman and Billings) on hold temporarily.

And it’s a darn good thing I did!

I got a call from Greyhound this afternoon, telling me that my scheduled trip from Missoula to Great Falls had been canceled outright, and my revised trips from Helena to Bozeman and Bozeman to Billings (thanks to cancellations of my purchased daytime routes) would involve arriving at the bus station in Bozeman in the middle of the night. I had hoped to avoid overnight travel altogether as much as possible, and I found myself standing in my bedroom, laughing uproariously at the absurdity of all this; if I didn’t laugh, I guarantee I would’ve been crying. The Greyhound representative refunded those tickets that had been impacted by the route cancelations, and I’m in contact with Jefferson Lines (the partner company) to see if there are plans for revised daytime schedules in the near future.

My sister-in-law, Sarah – who many readers got to know through my Epic Road Trip of Awesome series – recently described me (and this journey) as “intrepid”. I am resolute and dauntless about this trip, even though I have no idea how it’s all going to pan out. Never has it felt more true – or more freeing or more scary – at this moment.

So, I’ll be putting bookings on hold for the time being, just to wait and see how the stars align in the next few months.

But, hey, I’ve got some extra cash thanks to those refunds, and can start saving more. Maybe I should book those flights!

2017: The Year of Self-Discovery

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I LOVE self-reflection. It’s sometimes painful, sometimes astounding, frequently necessary.
I described 2015 as the year all the bad stuff happened, and 2016 as the year of the marathon (where I pushed myself to my physical and emotional and financial limits) 2017 was the year that gave me room to breathe, to reflect, to learn more about myself. Some amazing people entered my life, some amazing people faded from it, and we welcomed new human and feline loved ones from some unexpected corners. I experienced life more freely – the beautiful and the painful, the exciting and the frustrating. My current (and long-fought-for) employment went from a term contract to a permanent one, my hands have created some pretty beaded things (that people actually wanted to buy!), I got a tattoo, I’ve gone on an amazing road trip, begun plans for another one, read some books that made me think… and wrote. A Lot.

Now that I’ve wrung in the new year with friends new and old, continued our new New Year’s Eve tradition of a bitterly cold backyard fire, and contemplated drinking gallons of coffee on an equally frigit New Year’s Day, here are the posts that have made the rounds from the Life unscripted blog.

 

Top posts from 2017

5. This post from nearly three years ago still seems to resonate. For the record, not everyone can or should work a guide dog.

4. I write a lot about Jenny, my guide dog, but she celebrated a big birthday just after I started that new job referenced above.

3. One of the things I’ve done this year (and hope to write about in 2018) is take some self-defense training. This is why.

2. Another thing I got to do this year was give a speech and have a conversation with some amazing thinkers and professionals. Who knew that someone would ask a question that would make me think?

1. This post from last year – the most popular post from last year – keeps getting views and shares. The more fake service dogs and fraudulent handlers – and legislation to combat them – get before the public eye, the more important this issue becomes.

 

Top Posts WRITTEN in 2017

5. I got pretty personal in this post. I’m also honored that so many terrific women chose to trust me with their own stories of gaslighting.

4. This may be the only semi-political post I’ve written on this blog, except for maybe the one about voting.

3. I still can’t give Jenny cake on her birthday.

2. I had planned to write about my self-defense training, but maybe I should keep the conversation going about the absolute necessity of consent.

1. We’re all scared of things, but as I said in my speech, we can’t project that onto others.

 

Stretching and Growing

By far, I had the most fun writing this post. But if you’re not interested, that’s OK.

This year seems to be the year of attitude adjustments.

 

It also seemed to be the year where I’m trying to figure out how I can best advocate for myself without alienating my loved ones.

I’m pretty proud of this post, where I talk about succeeding and failing on my own merits.

 

So… Next Year?

I’m already super excited for 2018! Many of you have reached out in comment sections, through twitter, by email and through other social media to tell me what this blog means to you. You are all the reason I write.

Those of you who wrote me privately and told me you enjoyed my Epic Road Trip of Awesome series? Fear not! I’ll be blogging my 2018 road trip series as it happens!

The book reviews will be returning on the last day of each month; some readers have asked if I will review more than books about blind people. The answer is… maybe. I read a lot of books, and if I reviewed them all, I’d have no time to write anything else. I’m choosing to write reviews primarily regarding books with blind characters because there’s so much mystery and “other”ness surrounding blindness; I not only want to point out how an author or editor could do better, but also to thank writers for providing food for thought or nuance to their portrayals.

As for anything else… what would you, my readers, like to see? I plan on asking more questions as I continue to grow as a woman, an advocate, and a writer. So if there’s a topic you’d like me to touch on or explore, please let me know!

However 2017 has treated you, I’m glad you’ve chosen to share it with me. I wish you all kinds of great things for 2018!

“You’re SO brave!”

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“You are SO brave!”
I hear this phrase a lot. Maybe not as much as I used to, but I do hear it, usually relating to the fact that I’m a blind person who works, has a thriving jewelry-making business, and/or gets out of bed in the morning. I don’t think of myself as particularly brave for doing any of these things, and yet many people bestow this attribute on me.
But there was a time in my life where I heard that phrase – “You’re SO Brave!” – a lot more frequently. I hated to hear it, because I thought it was inaccurate, but looking back, maybe not so much.
This morning, I got an email wishing me a happy 13 years of patronage at the Edmonton Public Library.
THIRTEEN YEARS!
It seems like so very long ago, when I packed up everything I owned, effectively transplanting enough furniture to fill an entire apartment, and sinking my entire life savings into rent for my apartment’s six-month lease. I did this, moving to a city where I knew a grand total of one person – not well – with no job, no work experience, and nothing but a hope and a prayer that I would get one in the near future.
Thirteen years ago – almost to the day – my friends and I stayed up until 2:00 in the morning, eating junk food and drinking pop (we were straight-laced kids) and playing endless rounds of card games. I remember thinking it was pointless to try and get any sleep, since I had a flight to catch at some horribly early hour. Thirteen years ago – almost to the day – I slept through the entire flight, and my mom had to wake me up so I could get off the plane. My furniture hadn’t arrived at my apartment yet, so Mom and I slept on the floor in sleeping bags and I tried hard not to kick the lamp we bought and set on the floor to provide a little light into my apartment’s dark corners. I had the power turned on, but before I contacted phone and Internet providers, Mom and I took the train to the downtown branch of the Edmonton Public Library. I’m such a bookworm that I had a library card before I had phone, Internet, food, and more clothes than those that fit into my wobbly rolling suitcase.
My furniture took over a week to arrive, so Mom left me alone in that apartment for five or six days, where I slept in the sleeping bag on my living room floor until she arrived again on the same day my furniture appeared.
None of this made me feel particularly brave, and yet, over and over and over again, I heard it. “You’re so brave!”
The one person I knew in Edmonton took me under their wing. I was welcomed into their home and community for holidays, gatherings and a Christmas production where everything went horribly wrong. When they would introduce me as their “friend from Vancouver,” who moved to Edmonton for job prospects, and was building a life here, I heard it.
“You’re so brave.”
Months went by where I lived on very little. My parents helped me out when they could, but I lived on a lot of noodles and the kindness of neighbors and newfound friends – some of whom would invite me over for dinner or bring me oranges from their grocery shopping trip. The first job I got was a part-time gig, but it enabled me to renew my apartment’s lease for a year, spring for the occasional pizza, and explore other opportunities (some of which fell flat on their face). Some months I barely made rent – one memorable month I supplemented my income by making balloon animals at a downtown Canada Day festivity. I paid my rent at 10:00 PM on July 1 and lived on heaven-knows-what until I got myself another job later in the month.
Many friends and family back home – and new acquaintances and friends in Edmonton – told me I was so brave for doing all this, but for me it was a matter of emotional survival. The more I heard it – “You’re SO brave!” – the more I wanted to scream. To me, it was about simple mathematics: cheap rent plus job opportunities equals hope. Living at home minus career opportunities equals despair. To me, at age twenty, bravery had nothing to do with anything; to me, I couldn’t just keep doing the same thing over and over and over again an expect different results, so I made a change.
A big change.
A brave change.
Over the last thirteen years, I’ve borrowed hundreds – no, thousands – of books in various formats from the library. I’ve worked an amazing amount of jobs and gone through stretches of unemployment. I’ve married, bought a home, built a life.
And you know what?
I was brave.
But I’m glad I didn’t see myself that way all those years ago. Because if I had, I might have talked myself out of it in the first place. Or held myself up as some inspirational figure. Or denied myself some opportunities because they were “beneath me.”
To me, all those years ago, I did what needed to be done, and in hindsight, I did something brave.
Even now, as I’ve explored new career paths, begun planning an amazing trip, I don’t see myself as brave. Maybe that’s the point. Maybe in the moment, we shouldn’t see our spontaneous or daring actions as “brave.” Maybe, the next time someone comes up to me and tells me I’m brave for getting out there and living my life with blindness, I’ll remember this time in my life, smile at them, and say thank you.
Because they would not be entirely wrong.

What about you? What has made you brave? What has stopped you from doing something possibly scary but that you know will make you grow? What will light that spark in you?

Living in the Middle of the Road

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It’s funny, the patterns you see, when looking back. Almost exactly two years ago, I wrote a blog post about how not everything is a fight. Even though they were absolutely right on this count, the person who inspired that post had their own agenda, their own reasons to grind me down. In response to their comments – some that were accurate and some that were cruel – I tried to buckle down, to keep quiet, to not speak out about anything; in effect, I tried to become a quiet little mouse who never uttered a word as it came to perceptions of my blindness. I lost part of myself in the process. I believed most of what this person said – much of it to my detriment – and it took me years to realize that they could be right about one thing and yet still be very very wrong about everything else.

Somewhere along the way, I’ve met some amazing people who’ve helped me become a strong and forceful disabilities advocate. They are compelling and fearless and take no prisoners. I owe a great deal to them, for their willingness to stand up for people with a wide variety of disabilities – not just the unique challenges and triumphs their own disability(ies) present. They’ve made me feel welcome, and since then have encouraged me to share my perspective and kindly corrected me when I made mistakes that hurt them.
And yet, in between those two extremes, is the middle of the road. In many ways, I’ve found myself swerving from one extreme to the other, using bravado and force to overcompensate for the pain of passivity, of having my face shoved into the shoulder of the road.
Recently – and it’s not the first time – a loved one told me that I shouldn’t be upset when someone is surprised that I hold the job I do, and chooses to express this shock with sickly-sweet tones that one usually only hears directed at very young children. This was on top of a bunch of other little things that made the whole day just go sideways, even if nothing itself was earth-shakingly bad. To be honest, I’m still reeling from the comment itself, and the later understanding that I’ve been overloading a loved one with too-frequent complaints about how people respond to my blindness. They have the luxury to decide whether or not to hear about it; but it is such an integral and frequent part of my day that I don’t think twice about sharing it. In the moment of impact, it just didn’t feel fair.

But is it really unfair when I am expecting them to help carry my own burden for me when they’re not willing or able to do so on a regular basis? If I expect understanding from others, should I not offer it in return?

I chose to take that hurtful comment and seek out some self-reflection with the help of trusted friends. As of right now, however, I have no easy answers.
Have I been angry?

Yes.

Have I had cause to be angry?

Yes.

Do I expect others to be angry on my behalf?

If I’m honest, yes. Because I highly doubt they’d put up and shut up about being denied opportunities, infantilized, bodily manipulated, and underestimated on a very frequent basis.

Is that reasonable?

I don’t know.

Is it reasonable for friends and family to not want to hear about it all anymore?

I don’t know. I can’t choose to ignore it all, but I can choose when and with whom I open up these dialogues. It is my responsibility to be considerate and not over-burden loved ones with my own emotional baggage, no matter how reasonable and justified the baggage is. But it is also theirs to remember that no one likes their bruised feelings and interpretation of events dismissed out of hand, especially when they’re releasing some pent-up tension, as we all do.

Is it understandable for frustrations to boil over into a lack of empathy, cruelty and harsh words?

Yes, on both sides of the issue.

So what does this mean for me?

I don’t know.

 

My blog May look different in the coming weeks or months. Maybe I will take a break. Maybe I’ll do something radical and remove myself from disability spaces. Maybe I’ll do none of these things. Maybe I’ll do all of them.

I doubt I will ever be content sitting on the sidelines long-term, because allowing others to speak for me will limit my own opportunities, and those for the people who come behind me. But I can’t keep swerving between hostile aggression and docile compliance, because neither accomplishes anything. And I can’t keep coasting through, keeping my head down, allowing my presence alone to be an example, because where I am and what I do are only part of my story.

So I’m going back to the proverbial “driver’s manual”, to figure out the best advocacy “vehicle” for myself and my loved ones. Maybe I change what I say and how I say it. Maybe I choose my battles more carefully. Maybe I emotionally check in with my friends and family to see if they’re in a space to carry a particular burden with me. Maybe I take some time out to just exist, particularly on days where everything just goes sideways and I wouldn’t respond objectively anyway. Maybe I have all the tools I need, but I need to teach myself how best to use them. I’m not doing anything drastic, nor will I suddenly become a door mat.

But I am so very tired, on all fronts.

And maybe for now – on this leg of my journey – it’s time for someone else to take the wheel for me.

“Sorry, not Interested!”: How Disability advocacy Is a LOT like Telemarketing

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Not long ago, I spent several months as a business-to-business telemarketer. It was, by far, the most challenging – and in a way the most empowering – job I ever had. Sales doesn’t come naturally to me, but it was a skill I wanted to cultivate. But as with my ability to grow plants (I think about them and they die), my sales skills looked a little bit scraggly by the time another – more well-suited – opportunity came along.

But during those few months, I couldn’t help noticing how telemarketing is a lot like disability advocacy, and in some unexpected ways.

 

Read your Audience

 

When you make a sales call – any kind of sales call – it’s not enough to be friendly. In fact, if you’re too friendly, you can come across as sleazy or a pushover. Conversely, you can’t be too aggressive, because pushiness can be spotted a mile away. No one will buy your product or book an appointment with your service if you make them feel like you’re only in it for the sale. Even slight word changes can be the difference between making that sale and pushing a prospective buyer away.

Similarly, there are so many ways to do disability activism, some more successful than others. The “friendly educator” may get some individual positive results by remaining peaceful, while still feeding into the narrative of disability equating to docile compliance. But the chip-on-the-shoulder anger – over everything – can create equally damaging results, thrusting aside barriers while simultaneously alienating the very people to whom we are advocating.

Whether in sales or activism, it’s important to read an audience. Some people will respond to friendly coaxing; others do require a more forceful approach. In either arena, I have found that reading a situation will likely provide better results than a one-size-fits-all methodology.

And yet, no matter how one presents oneself, it’s important to be authentic; people can see a phony mask of sincerity or bravado a mile away, and few things shut them down more quickly.

 

It’s Hard, Dirty Work

 

When I was making sales calls, I felt a certain sense of shame surrounding the work I did to make a living. There’s a huge stigma around cold-calling unless it’s only one part of multi-faceted job duties. It’s not a warm-and-fuzzy industry, and it has been given a bad name by disreputable companies with pushy sales tactics and unethical practices (for the record, I worked for a company that strongly stressed ethical conduct). You make call after call after call, hoping to build enough trust and rapport with each contact to get that sale. If you are successful enough at it, your success can buoy you up when inevitable rejections drag you down. But your job – day after day after day – is to try and try and try again.

In a similar way, unless disability issues directly affect someone, few people seem to want to discuss activism. The main disability narrative – of recipients of charity, of helplessness, of pity – doesn’t leave much room for strong, vocal or visual opposition. And when this gets brought up, it frequently feels like we’re speaking into an echo chamber and hearing the sounds of crickets in response. Sometimes it feels very very thankless and exhausting, and many people seem to think that it’s our full-time job to educate the public on an on-call basis with no compensation – material or otherwise – for it.

 

You’re doing it Wrong!

 

There’s always a peanut gallery. It can be both a huge benefit – for encouragement and solidarity – and soul-destroying because of all the second-guessing. In sales, you’re either not pushing hard enough, not creating your own opportunities, not getting the job done. On the other hand, you’re wasting your time on prospects that are just too polite to tell you “no.” In disability spaces, I’ve seen so much finger-pointing. We’re “too pushy”, “too soft”, too understanding, or won’t just let it go, cut our losses and move on. And while I’m all for “best practices” (they’re important to provide some guidance) we all have our unique style of doing things that can still get the job done even if our colleague doesn’t do things exactly the same way. In fact, my successful sales style – and activism style – will differ from someone else’s. And I think they should; that doesn’t make any particular style wrong or bad, just different.

 

Some people Just Won’t “Buy it”

 

In sales, you can do everything right, and still your prospect isn’t interested. It’s not personal, not about you, and there’s nothing you can do about it.

Sometimes you make your “sales pitch” at inopportune moments, and sometimes – no matter how gentle you are – any pointing out of inequality or access concerns are just not ready to be received. This doesn’t mean we stop trying; it may mean we need to reflect on our strategy, ask some probing questions, or – in some situations – make an executive decision to cut our losses and move on.

 

But There are Those that Will

 

Acceptance can come from some truly unexpected places. I called one company just after they’d watched a Youtube video put together by the company I was fundraising for. They were so startled by the coincidence that they threw a huge commission my way; it was the biggest sale I ever made, and it came out of nowhere.

Sometimes, it’s easy for people with disabilities to constantly be in “fighting” mode (to maintain our right of equal access, personal autonomy, or basic human respect), and we can lose sight of the people in our lives who do “just get it”. Sometimes, they come from unexpected corners – from the teacher who asks great questions to the parent who both nurtures and empowers to the friend who knows how to do just the right things at just the right time to the stranger who asks how they can help and respects our reply. Sometimes, we write off opportunities so easily because we feel so discouraged by all the rejection and mental gymnastics just to get through the day. And yet, those moments of brilliance, of comeraderie, of success, spur us on to keep trying.

 

So What do we do from Here?

 

Even seasoned sales reps need to fine-tune their pitch to connect with prospective donors or buyers or customers. Just because something used to work doesn’t mean it will be effective next month or next year. Similarly, I do think disability activism may need a facelift as well, to allow each of us to self-advocate in the way we do best without pointing fingers at how wrong everyone else is. Sometimes aggression is necessary, and sometimes it gets in the way; sometimes we swat flies with a sledgehammer when luring them with honey would’ve been better, and sometimes we let things go that we probably shouldn’t. But the best salespeople – and the best disability activists – are always learning and questioning, fine-tuning their craft. Even though my days as a telemarketer are over, I’m still an advocate for myself if no one else. Everyone hears “no” sometimes, and, in my case, far too often it is because of my disability; but hopefully with more of those great people who do get it, we’ll soon live in a world where there will be more “yes”s than “No”s, and the “no”s are based on facts and bad timing, not negative perception.