Monthly Archives: October 2016

Book Review: Not Fade Away

31 Monday Oct 2016

Posted by in Book reviews, Nonfiction

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

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

 

Tracy’s Review

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

 

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

An Open Letter to Potential Employers: I have a Disability, and I Expect YOUR Professionalism

21 Friday Oct 2016

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It’s a pleasure to make your acquaintance. We’re in a unique situation where we can both benefit each other. You are offering something I need – a job that will, hopefully enable me to serve your company/school/agency well while financially providing for myself and my family – and I have the qualifications that you are seeking. I also happen to be disabled (or have a disability, depending on my choice in language).

Why am I writing to you today?

Last week I discovered an anonymous rant from one of your contemporaries, bemoaning the lack of quality applicants to a job posting. Resumes that had been slapped together, unprofessional interview attire, or (my personal favourite) an applicant’s Mommy walking into the interview with them would leave anyone frustrated and lamenting the quality of prospective employees. Support was fast and furious from other frustrated people – those looking for work in an overcrowded job market, and those charged with making hiring decisions. I understand that you want qualified, professional, competent people working for your company/school/nonprofit, and you receive dozens – if not hundreds – of resumes. But I have one question before I continue: will you read this letter all the way to the end, or will you dismiss me (as many employers have before you and will again) because I don’t fit the perception of your dream candidate?

October is national Disability Employment Awareness Month. Did you know that almost 90% of people on the autism spectrum are unemployed? How about more than 60% of those who are blind or visually impaired? Those are simply two groups of people with disabilities, and there are many more (even those who would never disclose them to you). It’s not because we’re not able or willing to work… it’s because perception (not disability itself) stands in our way.

Did you know that people with disabilities have markedly higher job retention rates, better attendance, and stronger safety practices than their non-disabled coworkers? Did you know that workplace accommodations are generally affordable (if not at minimal cost), and state and provincial governments may cover the costs of those that are more costly? Large corporations (Apple, Tim Hortons) have already started to include people with disabilities as part of their hiring process, both because we are qualified applicants and because we represent the communities in which they do business.

Back to the professionalism bit. I send in my nicely written and formatted resume with the education and/or work experience and/or skills that you are looking for. I pass the phone/email screening stage and get invited for an interview. I’m dressed up neatly and professionally, arrive on time, shake your hand firmly, answer all of your questions. Maybe I walk in with a cane, or roll in using a wheelchair. Maybe a service dog sits by my side, maybe I hear best with a hearing aid. Perhaps I stim, or struggle with multiple sensory input. Maybe none of these things mark me as being disabled. But that’s all you notice and fixate on. It’s like my resume – with all of that education or experience – doesn’t exist. All you can see is the eyes or legs or ears or brain that don’t work “normally.” Little matter that my resume includes years of relevant qualifications, I get asked how (if I’m lucky) or am told I can’t (if I’m not) use a computer, serve customers, carry things, sort items, dial a telephone, navigate the workplace independently. Someone I know even had a prospective employer ask her how she got dressed for the interview.

And you have a professionalism problem?

But it’s never too late to implement changes to hiring practices, to change the conversation regarding disability in the workplace. We can all benefit each other – you get a qualified employee who represents the community you serve, I have the opportunity to use my education and/or professional skills to economically benefit both your company and myself. You deserve the best, the most qualified applicants. Sometimes, that person is me. You want a professional job applicant? I’m right here! Maybe with a wheelchair, cane, or service dog, maybe without. I’d like to meet a professional interviewer and employer, who will see my documented skills and my hard-won experience for the positive traits that they are. Such employers are out there; you can be one of them. Some disabilities are obvious, others are hidden, but we all want the same things: professionalism, respect, and a fair shot. Are you up to that challenge?

 

Respectfully,

Disabled Job Applicants Everywhere

The Empowered Series: BlindAlive

15 Saturday Oct 2016

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It’s no secret that health and fitness are important to me (in case you don’t know, I present my history of playing goalball and running). One of the challenges of working out and being visually impaired is that it’s often a challenge to find someone to effectively describe techniques so that exercises can be performed safely. I’ve been fortunate in many ways, but not everyone receives helpful instruction in posture or physical education, and many blind people aren’t given the tools to exercise effectively and safely.

Enter Mel Scott of BlindAlive!

 

About Mel

Mel, 50-something, lives in Pennsylvania. She spent 30 years as a massage therapist and believes in the importance of fitness. She was diagnosed as a child with Retinitis Pigmentosa, and currently still has some vision (though she prefers to navigate the world with Jingles, her guide dog). Using that vision to read or watch videos, however, is no longer an option. Mel grew increasingly frustrated by many workout videos that show exercises but don’t describe them, leaving her to guess at her form. One day, while riding her exercise bike, she just thought “Stop whining and create it yourself!”

 

About BlindAlive

BlindAlive is “proud to have created a user-friendly, completely accessible solution to exercise and fitness” that can be done in the home. All of their exercise products have been tested by blind and low vision individuals to ensure that they are completely accessible.

Currently, there are twelve workouts available in audio (no video required!) in a variety of formats. Yoga, Pilates, bootcamp and other workouts can be digitally downloaded or shipped via CD, thumb drive or SD card.

But it’s more than just workouts. BlindAlive also boasts a blog, podcast and strong social media presence. Mel describes it as creating “more choices for more people.”

 

What’s next?

Mel hopes to continue to build on her basic workout library, to increase the intensity alongside the fitness of those who take advantage of the basic workouts. Her “basic” workouts can be made more challenging by increasing weights or intensity, so there’s plenty to keep the body challenged. In the immediate future, another yoga workout is in the works, and a whole-body stretch and a balance workout are coming soon. Mel says there are other surprises, but shhhhhh, she can’t tell!

 

Conclusion

We all have excuses for not working out. It’s too early, too cold, we’re too busy… but “because I’m blind” should not be one of them. Mel and her BlindAlive team have created a library of descriptive workouts that can be enjoyed by those with or without sight. So no more excuses! Hit the gym!

Book Review: WWW – Wake (guest review by Meagan Houle)

07 Friday Oct 2016

Posted by in Book reviews, Fiction

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From the first blog post I wrote about books with blind characters, I’ve been regularly encouraged to read and review Robert J. Sawyer’s WWW series, about a blind teenager who becomes friends with the World Wide Web. In my defense… I tried to read the first book, Wake. I tried more than once. But science fiction really isn’t my thing, and I found I couldn’t give the book an objective review because of it.

Thankfully, my dear friend Meagan stepped up and offered to read and review the book, and graciously allowed me to edit it and publish it here on my blog. Thanks, Meagan, for taking time out of your hectic schedule to help a friend!

 

About the Book

Caitlin Decter is young, pretty, feisty, a genius at math – and blind. Still, she can surf the net with the best of them, following its complex paths clearly in her mind.
But Caitlin’s brain long ago co-opted her primary visual cortex to help her navigate online. So when she receives an implant to restore her sight, instead of seeing reality, the landscape of the World Wide Web explodes into her consciousness, spreading out all around her in a riot of colors and shapes.
While exploring this amazing realm, she discovers something – some other – lurking in the background. And it’s getting more and more intelligent with each passing day.

 

General Observations

this book is like so many sci-fi books I’ve read: the premise is absolutely fascinating, and the research is impressive. Here, our author spares us no details, and it’s clear that he’s given this book an enormous amount of careful
thought. I like his imagination, his intelligence, and his clear
commitment to fleshing out a complicated idea in a way that’s accessible to everyone. Unfortunately, character development, stilted writing and narrative flow are sacrificed in the name of a good plot. The science, while being fascinating and necessary, often crowds the story itself, dismissing the characters to a shadowy corner while the author embarks upon complex trains of thought.

 

Emotional Complexity

Even with a unique protagonist, it seemed that Sawyer attempted to insert excess emotional depth while leaving some characters stilted and wooden.

This isn’t to say that the author did not sometimes strike gold. There
were moments of startling brilliance in this book, where I actually
found myself tearing up. Caitlin’s interactions with Webmind, for example, while awkwardly written, are fun and engaging and wonderfully quaint. It made me
wonder what it would really be like to converse with a whole new kind of consciousness–something I’d often pondered briefly but never been moved to really sink my teeth into.

 

How do the Blind… do… Anything? TMI!

I began this book being quite dismayed, and mostly stayed that way throughout the book. The author, in typical scifi writer fashion, gave us far too much information about how Caitlin does every little thing. He goes so far as to explain the precise keystrokes she uses to operate her screen reader, which interrupts the flow of the text and was really distracting to me. We do not need to know that she has just hit a command to shift her computer’s focus or make her screen reader read an entire email aloud. I understand that the author is trying to help us understand blind people, but the execution is downright painful. Sadly, this pattern continued, broken only occasionally by relevant information (for instance, describing cane travel). Right through to the end, though, we’re bombarded with essentially useless trivia about how Caitlin navigates her world, even at times when it really disrupts everything else.

 

Nuggets of Gold

Now, the author did get a couple of things exactly right–so right it was almost uncomfortable. He pegged the social isolation, the transition from a dedicated school for the blind to a mainstream school, and the general anxiety a teenage girl  will feel when she’s getting to know a new boy. When the boy in question mistreats her because of her blindness, the devastation and humiliation she experiences are achingly familiar. I sucked in my breath and skimmed for a while, not wanting to linger in that place longer than I needed to. I imagine this will have an impact on sighted readers, who understand intellectually why this behaviour would be wrong but may not be able to tell exactly how it might feel until they are forced to imagine it directly.
The other thing I liked about this character was her frustration with the world at large. She’s fiercely independent, gifted and capable, but she still has to deal with people’s perceptions of her. Her struggle to preserve bodily autonomy and personal agency are, once again, very familiar to me. While she’s still getting used to her new school, her tray is physically taken from her hands, even after she has said she does not want to have it carried for her. Her own wishes are considered irrelevant, which so often happens to us when we don’t want help and are given it nonetheless. I can identify with her annoyance and sense of futility.

The author also portrayed well the assumptions and mistakes made by parents, even when they have parented a blind child for such a long time. Caitlin still has to remind her parents that she does not use a mouse, or that she can’t perceive this or that. The moments of awkwardness stand out sharply because her family is so used to her the rest of the time. I have experienced this with my own family: 22 years later and they still slip up sometimes. I see it as an encouraging sign: it means they’re not constantly thinking of me as “other.”

 

Regaining Sight: the Miracle Cure

Now, to address the part of the story I have little knowledge of: the process of gaining sight when you’ve never had any. I’ve been severely visually impaired my whole life, but I do have enough sight to understand concepts like colour and light. Caitlin didn’t have any of this, so when she was given it almost all at once, I expected her to be more than excited. I expected her to be overwhelmed, anxious, even scared. I thought that all the new stimuli going to her brain would, at the very least, throw her off for a bit. While she is definitely dazzled by her new vision, and it takes her a while to learn how to use it, the transition seems far too easy to be realistic. The author portrays the blindness cure as something that will somehow turn Caitlin’s life right around and fix her. She is so gloriously happy and comfortable with her new sense almost right away, which rings false to me. Again, I can’t say what it would be like, but judging by deaf people’s reactions when they hear for the first time, it would be far more impactful than this author is making it look. Again, we have a case of the plot moving relentlessly onward, giving Caitlin hardly any time to adjust.

 

General Conclusions

The author had the right idea, and was working with some very interesting plot points. He captured moments of raw emotional power, and tackled controversial issues with grace. That said, the prose was often stilted, the characters poorly-developed, and the blind character awkwardly-written. I would not recommend the book to a blind person, and would hesitate to recommend it at all, as a general reader. I have little patience with clumsy writing, so while I really did want to like this book, I could hardly even finish it.

2.5/5 stars.