Monthly Archives: June 2016

Book Review: Crashing Through

30 Thursday Jun 2016

Posted by in blindness, Book reviews, Nonfiction

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It’s not uncommon for strangers, friends, and family to ask me the question: if you had the opportunity to see, would you? My friend Meagan has written a concise answer to the question (an opinion that I share). Science has not addressed curing the causes of my blindness, so at this moment, for me the question is moot. But I can’t deny my own sense of curiosity about the uncommon transition from blindness to sight; the reverse has been chronicled extensively, including a woman who allegedly blinded herself.

 

Crashing Through: A true Story of Risk, Adventure, and the Man who Dared to See
By: Robert Kurson

 

Blinded at age three, Mike May defied expectations by breaking world records in downhill speed skiing, joining the CIA, and becoming a successful inventor, entrepreneur, and family man. He had never yearned for vision.
Then, in 1999, a chance encounter brought startling news: a revolutionary stem-cell transplant surgery could restore May’s vision. The procedure was filled with risks, some of them deadly, others beyond May’s wildest dreams. There were countless reasons for May to pass on vision. He could think of only a single reason to go forward. Whatever his decision, he knew it would change his life.
Beautifully written and thrillingly told, Crashing Through is a journey of suspense, daring, romance, and insight into the mysteries of vision and the brain. Robert Kurson gives us a fascinating account of one man’s choice to explore what it means to see – and to truly live.

 

Touching All the bases

 

This book is a combination of autobiography and scientific exploration of vision. Kurson’s look into Mike May’s life – both pre- and post-surgery – is effectively drawn. With a journalist’s precision, he details the chemical reaction that caused Mike’s blindness, the uphill battle his mother fought to admit him into a public school, and Mike’s struggles and successes in his personal and professional life. When Mike begins to become accustomed to his vision, it’s not all sunshine and roses; sometimes it’s incredibly frustrating to go along that journey with May and Kurson. Much of the latter third of the book details the scientific research that helped explain what he could see and why other visual input was so challenging.

 

Mike May: A Blind Man who can See

 

Kurson shies away from characterizing Mike as an angel or hero or otherwise “super blind man.” Sure, he did a lot of exciting and great stuff with his life, but it’s not framed as “despite his blindness, he…”. Mike May’s curiosity of the world in his childhood and early adulthood set the stage for him to embrace the challenge of vision, and the author draws this out with particularly nuanced emphasis. Mike May now has good vision, but it is clear that he cannot process what he is seeing the way a fully sighted person can; he is, effectively, a blind man who can see. It is clear that Mike May was intimately involved in the creation of this book, something that’s quite rare for blind subjects of biographies written by sighted authors.

 

Some Drawbacks

 

I personally found it incredibly disconcerting that during the entirety of the book, Mike May was referred to as “May”. The reason for this is unclear to me, but even in incredibly moving descriptions of discovering new things he could see, or describing some of the challenges he faced, having him referred to as “May” made it almost seem clinical and removed.
Some of the scientific data, while fascinating, could have been included in smaller portions throughout the book, rather than all in one chunk (though I do realize that much of the scientific data Mike May discovered at a particular time in his “vision journey”). I don’t know if there’s any way to make both biography and science lovers happy, but this review is my own.

 

Conclusion

 

If you’ve ever wondered what it’s like to receive vision after nearly a lifetime of blindness, this book chronicles one man’s journey well. It’s not always necessarily a happy story, but it’s an important one. After reading this book, I still hold the same opinion on restoring or improving my vision given the chance, but that opinion is still my own. If surgery is the answer for some, that’s terrific; if not, that’s OK, too. But Robert Kurson and Mike May have given me much food for thought.
4/5 stars.

The Liebster Award

28 Tuesday Jun 2016

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I’ve seen the Liebster Award on several blogs over the past few months, and I actually got nominated this go-round! Thanks, Glen, for giving me the push and encouraging me to have a little fun on the blog. Below, here are my answers to a few questions, and I’ll ask those I nominate a few questions as well.

 

1If you were to win the lottery, what would you buy first?

Confession: I’d pay off my house, and then spend a year traveling the world. 🙂 The order is significant to me because I hate the idea of debt hanging over my head… so a lottery win would immediately go to getting rid of the stress of a mortgage, THEN I could truly relax and have a blast exploring new and interesting places.

 

2What is your favourite dessert?

I have to pick just one? I love anything that puts fruit and chocolate together; if I can’t have that, I’ll take ’em separately. No custards or whipped cream, though…

 

3If you could have 3 celebrities over for a dinner party, who would you invite and why?

I’d want a cool celebrity jam session with Elton John, Garth Brooks and Adele (don’t ask, it would work!) Elton and Adele would probably call my upright piano “charming”, right? This is hypothetical, right?

 

4Who are your favourite bands/artists?

Pink Martini, Over the Rhine, Sara Groves and Flyleaf… for a wide variety of different reasons. It depends on the headspace I’m in at the moment.

5What are your favourite TV shows?

The original Law and Order (the spinoffs never did it for me), Corner Gas, and Air Farce. A piece of me feels like I’m 50 years old, lamenting the “good old days” of TV…

 

6If you could go back in time and give your teenage self one piece of advice, what would it be?

Nothing is permanent unless you make it so. What you decide today CAN effect your future, but you can always make other choices… so use your head and your heart, jointly, to forge your own path.

7Which is your favourite social media site?

I use Facebook and Twitter for different reasons entirely. I’d have to say I think I prefer Twitter, if I had to choose…

 

8Do you have any favourite jokes?

Not really. People who know me well will tell you… I cannot tell a joke, at all… My humor tends to be rather dry, occasionally witty or punny…

 

9Do you enjoy playing or watching any sports?

I used to play goalball, and this year I’ve seriously taken up running. As for watching sports, I enjoy hockey, though I’m not as into the game as many I know.

 

10Who would play you in a film of your life?

My life is waaaaay too boring to be made into a movie! And you’d think, being married to a movie buff, that I’d have tons of actresses to list off in response to this question. Nope! Sorry! 🙂

 

11What would be your dream job?

I’ve had a couple of jobs that might fit as  my “dream job” over the years. But while I’m on the job hunt, I think of this often. Where do I go from here?

I’d want a job where my role is important, that it makes a difference in workplace culture and dynamics. I’d like to build on my pre-existing skills and learn new ones along the way. It would be great if it had a combination of people-time and alone-time, as I find the balance works well for me. The actual job title and duties are still up for debate, but so long as they’re legal and ethical and don’t bore me to death, any job can be a dream job…

 

I Nominate…

I’ve got a few questions for some awesome bloggers. I have linked to some before, and some have linked to me… Let’s get to know them better as well!

I am asking Meagan at “Where’s your Dog?“, Beth at “Safe and Sound Blog” and Steph of “Bold Blind Beauty”:

  1. If you could go anywhere in the world for a month, where would you go?
  2. What’s the most unusual food you’ve ever eaten? Did you like it?
  3. Did you have any childhood heroes? If so, who were they?
  4. Do you still have a favoured childhood item such as a toy or blanket? Where do you keep it? Any stories about it?
  5. Do you have a favourite time of year or holiday? What is it and why?
  6. What is a quirk of yours that some have found endearing?
  7. What’s your “guilty pleasure”?
  8. What do you do on a gloomy, rainy day?
  9. What relaxes you when you’re stressed?
  10. What would a party at your house look like?

Looking forward to seeing some fun answers! 🙂

The Empowered Series: Electric Marshmallow Productions

15 Wednesday Jun 2016

Posted by in The Empowered Series

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Over the past few months, I have followed Dominick Evans on Twitter. He’s created some thought-provoking conversations on the role of disabled people in media, representation of disabled actors in film and on TV, and the idea that Hollywood produces films that perpetuate the idea that it’s better to be dead than disabled.

 

About Dominick

 

Dominick lives in the metro New York City area with his partner in life and business, Ashtyn. He has Spinal Muscular atrophy, a progressive neurological disability, and lives with OCD. To navigate the world, he uses a wheelchair which currently is in need of repair. OCD presents its own challenges with concentration, but that makes working from home an ideal setup. In 2014, he graduated from Wright State University with a BFA in Motion Picture Production, and has a strong desire to direct. Dominick is Polish-American, left-handed, and has “actor” and “singer” listed on his resume.

 

About Electric Marshmallow Productions

 

Electric Marshmallow Productions is a writing and editing business with a branch in film and video production. Dominick and Ashtyn both write and edit contact for large corporations and small businesses alike, with Ashtyn doing much of the writing and Dominick primarily editing content. Disability activism is both a personal and a professional interest, as is activism in the LGBT community.

 

What’s Going On and What’s Next?

 

As part of Dominick’s film work, he moderates a frequent Twitter chat called #FilmDis which addresses media portrayals, representation and hiring practices of people with disabilities. Most recently, he has helped to start a conversation about the recent movie based on the book “Me before You”, which he maintains portrays the idea that it’s better to be dead than disabled. In the future, he hopes Electric Marshmallow Productions will operate specifically as a film and television company that changes perception of people with disabilities in mass media and ultimately in the wider world.

An Open Letter to Hiring Managers: Want to make $$$? Hire Inclusively

09 Thursday Jun 2016

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Earlier this week, I found a story about a home improvement retailer who hired a service dog user with a brain injury. This is terrific! This is corporate responsibility. This is true representation of the broader community which this retailer serves. This is hiring people with unique skills and talents to fill a role that a company sees as valuable. I took to Facebook and thanked whoever hired this man for giving him a position that he clearly desired, wishing more hiring managers and companies did the same.

 

I’m on the job hunt, too, and it got me to thinking. Did this company hire this man – will a company hire me? – only because it is the law to do so? Will they do so because it is the socially conscious “in thing” to do so? Or will they hire people with disabilities because they realize that we’re a huge untapped market for them? Disability not only touches those living with blindness, who are deaf, who use wheelchairs, and/or who have brain injuries (sometimes in combination)… but those with invisible disabilities as well. This doesn’t even address our friends, families, and others who care about us. A Canadian organization recently launched the We Belong App. The app allows consumers to search by location for companies and organizations that hire inclusively (primarily people with developmental disabilities), giving them the opportunity to show financially that it pays to do so.

 

Meaningful employment is something that’s very important to me. I want to be hired at a position with a company that views me as an asset, not a liability. Unfortunately, the latter appears to be the prevailing thinking among people who’ve met me for interviews. I don’t make constant eye contact, I imply that it’s important to use words to communicate… and yet I have years of experience behind me, so that should count for something. Do I want a job? You bet your last dollar. But I want a job with a company or organization that views me as the asset that I am, with unique insights, skills, and talents to bring to the table. Things may have to be done differently, but change is a part of life; many accommodations for people with disabilities end up benefiting entire workplaces, and it’s not often realized until after the disabled employee moves on to other opportunities (personal or professional).

 

So for those who hire people with any disability out of pity or patronism, thanks, but no thanks. It makes everybody miserable and you honestly shouldn’t bother. For those who don’t hire us because of your preconceived notions of our capabilities – not because you truly had more qualified applicants – please know that you’ve broken human rights legislation. The law is only one piece in a mosaic that fits together to include people with disabilities in society, in the classroom, in the workplace. It takes inclusive thinkers – who are unfortunately not frequently in HR – to understand that we’re more than the eyes or ears or hands or legs or brain that doesn’t work as expected. If the law is the only reason you begrudgingly hire me or anyone with a disability, congratulations, you’re a rule-follower, move along now. Ditto about everyone being miserable. But if you want to be progressive, inclusive, and innovative like you claim you are, hire people with unique skills, talents and insights who just happen to be disabled. Your business will benefit as much if not more than the employee you hire, because we do have friends and families and others who care about us… and they reward truly inclusive and empowering workplaces with their positive words to their friends and families and coworkers… and their consumer dollars. The bottom dollar is a motivator for many; I’d like to use some of mine to support employers who don’t discriminate. but that can only happen once pretty words on a page start becoming action, once HR managers, CEOs, and office managers view people with disabilities as unique resources and assets to business and commerce.

 

Oh, and if you are one of those progressive, inclusive, innovative HR managers, CEOs, or office managers, drop me a line; I’d be happy to meet you.

“Do you Want Fries with That?”

02 Thursday Jun 2016

Posted by in blindness

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A few days ago this article blew up my social media accounts: a blind man is suing McDonald’s for providing exclusively drive-through service during certain hours late at night, thus alienating blind customers. VERY strong opinions – often conflicting – have been voiced by many people I respect. There are two definite schools of thought, and I haven’t seen much middle ground:

(1) the plaintiff is acting entitled and wants special treatment for blind people, which makes all of us look bad;

(2) If a paying customer wants chicken McNuggets at 2:00AM, a driver’s license shouldn’t be required.

After considering the angles myself (admittedly not the legal implications), I’ve got a few brilliant thoughts to add to the pile… but let’s leave the “why would you want to eat at McDonald’s in the first place?” comment out of this, okay?

 

First: drive-throughs are for cars, period, the end. If you’re a particularly height-challenged pedestrian walking through a drive-through and someone pulls up in a big tall truck, the likelihood is that the driver can’t see you and you’ll end up being road pizza. Add to that the small size of drive-through lanes, some of which have curves that make it impossible for drivers to see pedestrians anyway, and being a pedestrian in a drive-through lane is taking your life into your hands. That’s why they’re called drive-through windows, OK? Good?

 

It is completely understandable that McDonald’s as a business wishes to serve late-night customers without having to keep open a storefront where people enter who may be intoxicated and/or disruptive and/or wish to find a warm dry place to sleep. So they get the benefits of serving drive-through customers without having to watch a storefront. I would assume that intoxicated pedestrians have attempted to walk through the drive-through lanes and order food, and I’m sure that’s not always pleasant. The customers who are driving (in theory) are sober and just want their food and everyone is happy.

 

But this is where in my opinion it gets sticky. Like it or not, not everyone drives or has ready access to a vehicle – and it isn’t always because of blindness. This is where I think the plaintiff is short-sighted (no pun intended). Over the years I’ve met people who have epilepsy, are terrified of driving at night, or don’t wish to take on the financial responsibility of keeping a car in good working order. While the article indicated employees mocked him on several occasions (unprofessional?), I’m sure they’ve had many intoxicated people try and take their lives in their hands by walking through the drive-through. But relegating this lawsuit to discrimination against exclusively blind people – instead of all those who can’t/don’t drive – has many blind people thinking he’s wanting special treatment.

 

But is he really and truly wrong? I don’t think so. McDonald’s and other fast food restaurants with drive-through-only hours are providing an additional perk to those who can drive just because they can drive. And I don’t think that’s fair either. Driving is a huge societal advantage; you can get in your car and go wherever you want to go. You don’t have to rely on someone else’s schedule to leave a dreaded Thanksgiving dinner with your in-laws, you can take a spontaneous road trip just because you want to, and you don’t have to worry that you’ll get stuck in the rain because the next car (read: bus) won’t show up for 45 minutes. And, yes, you can get McDonald’s fries at 2:00 AM because you have a car and driving is the only way you’ll get served.

 

I don’t know how this lawsuit will pan out. But maybe if everyone meets in the middle, something will change and pedestrians will get served at 2:00 AM because we get hungry at that hour and we’re paying customers too. Maybe this happens by opening a designated walk-up window out of the way of those cars that can run us over. Maybe the storefront should be open the same hours as the drive-through windows. Maybe fast-food restaurants can take advantage of food-delivery services that have become extremely popular in the past few years (I’ve seen this, by the way). However it happens, it’s 11:00PM as I finish typing this. I live four blocks from a McDonalds… I wonder if they’re open? I think I’ll walk over there, because I really want some fries.