YOUR book Reviews: All about Guide Dogs

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I know, I know, book reviews are usually published at the end of the month.

But it’s almost the end of April… that counts right?

I’m publishing this blog post today because it’s International Guide Dogs Day!

 

I had a book review all ready to go today on the blog, and then I decided not to publish it – that whole nugget of wisdom “If you don’t have anything nice to say…” is applicable here. I realized that I didn’t want to commemorate this day with a blog post of a book that I found light, fluffy and aggravating in equal measure; there’s got to be more enjoyable books out there featuring guide dogs.

So, I’m coming to you, my readers…

What are some of your favorite reads featuring guide dogs? Are there some books that you recommend with caution? What about those that could be better?

If you’ve ever worked with a guide dog, known someone with a guide dog, or just love stories about dogs… chime in here!

I can’t wait to get some great recommendations!

 

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The Intrepid Journey 2018: Opportunity Knocks

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I hate the saying “everything Happens for a Reason.”

 

Sometimes, there is no reason.

 

But, in many things, I find myself embracing new opportunities where once I had seen closed doors.

 

Does opportunity knock, or do we make our own?

 

Are both true?

 

I’ve made a decision since last I wrote: I’m skipping Missoula. Sure, I booked a bus ticket to Missoula (and not using it will leave me out $30), but other bus route cancellations have made visiting there impractical. I’m spending an extra day and night in Flathead County, making my way to Great Falls by train and bus a couple days earlier than originally planned, which leaves me some time to spend in Butte! I’ve heard both amazing things about Butte, and have been told by other people to skip it. But since I was able to easily find accommodations in Butte (compared to the hostile reception by multiple Missoulian AirBNB hosts), and there’s a ton of historical stuff within walking distance, I figure I can’t REALLY go wrong. I’ve also been able to locate places to stay in Bozeman and Billings, which now completes the accommodation search. YAY!

 

Transportation is still a concern (though research has told me that there may be schedule changes later this month); and here I thought that would be the easy part of trip planning!

 

WRONG!

 

But… opportunities.

 

Wonderful opportunities.

 

I’ve been toying with the idea of running a half-marathon for the past couple years, and I happened to Google what races might be running in Montana while I’m in the State.

 

And I found one.

 

I have signed up for the Montana Marathon in Billings! It’s a day earlier than I planned to get there, but there’s a half-marathon! I’m tired of saying that someday I might run a half-marathon… I am going to run a half-marathon five months from today! I’m still working out some logistics – when I will get into town, who will be my guide runner, and how I plan to train both at home and away – but this is honestly the most right-feeling thing about this trip. It’s yet another way I will grow and stretch and push myself and meet more people… I couldn’t be happier!

 

Without the canceling of bus routes and shuffling my itinerary and putting it all back together again, this wouldn’t be possible.

 

So I’ll be running mile after mile, doing squats and planks and stair-climbs, thanking Opportunity for knocking when I was in a position to answer.

 

Please consider supporting this trip and help making it the best it can be!

Book review: “Carry On” by Lisa Fenn

I first heard of this book during the lead-up to the 2016 Paralympic Games in Rio. Fellow blogger Beth Finke caught an interview with the author on NPR and used it as a launching point to discuss the wonder and beauty of cross-disability assistance. I know I’m late, but I decided to read this book during the leadup to the 2018 Paralympics. I was hooked!

Publisher’s Summary

In the spirit of The Blind Side and Friday Night Lights comes a tender and profoundly moving memoir about an ESPN producer’s unexpected relationship with two disabled wrestlers from inner city Cleveland and how these bonds – blossoming, ultimately, into a most unorthodox family – would transform their lives.

When award-winning ESPN producer Lisa Fenn returned to her hometown for a story about two wrestlers at one of Cleveland’s toughest public high schools, she had no idea that the trip would change her life. Both young men were disadvantaged students with significant physical disabilities. Dartanyon Crockett was legally blind as a result of Leber’s disease; Leroy Sutton lost both his legs at 11, when he was run over by a train. Brought together by wrestling, they had developed a brother-like bond as they worked to overcome their disabilities.

After forming a profound connection with Dartanyon and Leroy, Fenn realized she couldn’t just walk away when filming ended; these boys had had to overcome the odds too many times. Instead Fenn dedicated herself to ensuring their success long after the reporting was finished and the story aired – and an unlikely family of three was formed.

The years ahead would be fraught with complex challenges, but Fenn stayed with the boys every step of the way – teaching them essential life skills, helping them heal old wounds and traumatic pasts, and providing the first steady and consistent support system they’d ever had.

This powerful memoir is one of love, hope, faith, and strength – a story about an unusual family and the courage to carry on, even in the most extraordinary circumstances.

Lisa’s Story

This story is deeply personal. While it is interwoven with strong and sharp threads of Leroy’s and Dartanyon’s stories – and those of other key figures – this is Lisa’s story. From early childhood memories to blustering and fumbling her way to a dream job to high school wrestling matches and beyond, We get to know Lisa as a warm-hearted woman who yearns for a family. And she definitely gets her wish!

We’re introduced to athletes, to coaches, to parents and siblings. We laugh, we cry, and we hope and despair. But, make no mistake, this is Lisa’s story.

Sports – The Great Equalizer?

I’m not huge into wrestling, but Lisa’s writing puts the reader in school gyms, locker rooms, and world-class sports venues. You can definitely feel her respect for athletes in their own right, though there’s a strong undertone (sometimes voiced by coaches and observers and sometimes by Lisa herself) that athletes with disabilities are not talented in their own right… they’re talented “for a legless kid” (as someone referred to Leroy). The reactions to both young men – men of colour, living in poverty, and with disabilities – are almost exclusively related to their disabilities (as many of their peers are both people of colour and living in poverty); some are astounded that they can wrestle at all and use them as “inspirations”, others don’t want to challenge them out of fear or ignorance, and still others give them the respect of laying it all on the mat. And yet, it’s clear that wrestling – and Lisa and ESPN’s exposure – gave both Leroy and Dartanyon opportunities that they otherwise wouldn’t have had.

Disability as Inspiration or Tragedy

As much as I enjoyed this compelling read overall, I had a hard time escaping the prevailing theme that disability was something to be pitied or inspirationalized. In Lisa’s career as a sports editor, she interviewed athletes from all walks of life, including a hockey player who – years before the interview – became injured and paralyzed just seconds after stepping onto the ice during his first major game (you could almost hear the sad cellos playing in the background). Leroy and Dartanyon’s wrestling coach contacted the local newspaper to write a story about his two disabled wrestlers (clearly without consulting them); Lisa was unable to explain why she thought it was a story that needed national attention, but to her it was, so she dropped everything to fly back to her home city and interview these kids. When the resulting ESPN story aired, the resulting letters and responses left this reader with the distinct feeling that Leroy and Dartanyon were meant to be viewed as recipients of generosity and catalysts for people to look outside themselves, rather than talented athletes in their own rights.

And Yet…

No one can ignore the confluence of race, poverty, and disability, and how Leroy and Dartanyon’s families – neither of which were what many would consider “stable” – shaped their high school and college/university experiences. Dartanyon, in particular, frequently refused to be “pitied” as a blind guy, even though he could’ve made use of adapted services, because he didn’t want anyone to treat him differently. Leroy didn’t have the luxury of being able to blend in, but it is clear that his school and training environments are not well-equipped for many students (lack of uniforms and sports equipment) and definitely not set up with wheelchair-accessible buses or classrooms. It’s hard to look away from the reality that many cards are stacked against these young men’s lives and journeys. Lisa is tireless in her desire to provide for Leroy and Dartanyon, even as her adopted and biological family with her husband keeps growing. It’s heart-warming and frustrating and an important conversation – nature and nurture and empathy and personal responsibility. It made this reader uncomfortable, and maybe that’s a good thing.

Conclusion

This book is part memoir, part sports journey, part family history. There are some deeply uncomfortable mentions of ableism, racism, and inspiration porn (based on the depiction of the ESPN piece, “Carry On”, this reader has no desire to see it). And yet, this autobiography is compulsively readable, uplifting in places, and thought-provoking. It’s definitely worth the read.

3.5/5 stars.

I’m a Real Runner Now!

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Today is March 19. It’s the last day of winter, which has felt like it’s had a hard time making up its mediorological mind. We’ve had weeks of frigidly cold temperatures, several large dumps of snow, and weeks where the snow melts and it feels like spring is just around the corner.

Now that spring is actually around the corner – according to the calendar, at least – I can claim something I’ve wanted to for years.

I’m a real, honest to goodness, winter runner!

What made it all happen? Was it my desire – voiced every winter when I stopped running as soon as the ground froze – to run year-round? Or when I started contacting running groups to network with other runners? Was it the purchase of layers of clothes or spikes for my shoes? Was it reading the facebook statuses of friends who ran in sub-zero temperatures and desperately wanting to join them?

It was all of these things and more.

For years, I’ve run with my guide dog during the spring and summer and autumn months. For years, it’s been an incredible journey. For years, it relieved my stress and my pain – from a sudden job loss to months of job-hunting to the death of a beloved pet. One day this past January, I was waiting for a taxi (which you do in -35C) and noticed a runner on the path. I wanted to stop them and ask what they used for gear, but I was cold and tired and didn’t want to interrupt their pace. Besides, I’d already purchased pants, a face mask, shoe spikes, and a bright yellow jacket that makes me visible for blocks; I think I wanted the connection more than I wanted to swap gear stories. I’ve been unable to connect with local running groups because of their location (too far) and their speed (FAR too fast). Unfortunately, I think for me, at least right now, winter running is a solitary pursuit. I want to continually challenge my body, to fly with Jenny down the streets of my neighborhood, to feel the burn in my legs and my lungs as I pushed myself to my limits. Even on my own, I wanted the fair-weather journey to continue. I’ve been sidelined by blizzards, illness, and injury, but those can no longer stop me.

I am a winter runner!

I realized I was a winter runner just yesterday. It wasn’t my fastest winter run (a 5K in February) nor the coldest (a -20C run in January that presented tiny ice crystals on my eyebrows), but I think it was my favourite. My shoe spikes cut through the layers of ice and kept me upright. My legs burned as they forced my feet to shove aside the wet, slushy snow. My toes got soaked when the ice cracked beneath my stride and unearthed an inches-deep and very wide puddle. It was a sunny late-morning that would later give way to clouds and more snow flurries, and I felt like the sun had come out just for me, to cheer me on and push me forward. I came home with freezing toes, burning legs, and pants that were soaked halfway to my knees. Jenny shook droplets of water from her hips to her toes, ran upstairs and brought down her tug rope.

I wanted more.

So, now that I have proven to myself that Jenny and I CAN brave the cold… I refuse to allow myself any more excuses. We’re getting out there, hitting the road, and nothing can stop us!

The Intrepid Journey 2018: Back to the Drawing Board

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Well, not quite… but mostly.

 

Since my previous post about my three bus cancellations, I’ve been waiting… and waiting… and waiting. In addition to the three tickets I was alerted had been changed canceled, further research has shown me that one more ticket had been altered, making my accommodations in Helena nearly unusable. I was able to get that ticket refunded as well, but that leaves me in a position of having multiple accommodations and no safe way to get from one to another, unless I book alternate arrangements and/or change my accommodation bookings.

I’ve booked one flight – the one to get me to Seattle – and one bus ticket that appears to have been unaffected by route and schedule changes. Beyond that, I’ve been doing mental gymnastics trying to figure out whether to keep my existing schedule and hope transportation figures itself out or making changes, forfeiting one unaffected bus ticket and hoping things don’t change further.

I am tired.

I’ve also decided to create a crowdfunding page. Many readers have read my Epic Road Trip of Awesome series and expressed their enjoyment of it. Because I plan on blogging about The Intrepid Journey, I’m asking faithful readers to consider supporting this trip to help make it the best trip it can be. 🙂

Please consider supporting this trip and sharing the crowdfunding page (even sharing can help out!)

I’ve got a generally clean slate, and that is both exciting and aggravating.

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.

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.