7 Lessons Learned on a Paddle Board

20247589_1900845293573972_6553534300030194330_oLesson #1:  Paddle boarding visually impaired is the perfect illustration to describe the continuum of blindness that confuses the public (i.e. for people who are perplexed when they see someone with a guide dog or cane reading a text message with their eyes).  

Navigating around Newport Harbor today reminded me of my favorite quote about my eye disease, Retinitis Pigments. ”RP is seeing a tiny piece of paper across the room and then tripping over an elephant on the way to pick it up.” I paddled hard to the right in order to avoid a small buoy, feeling extremely proud of myself for spotting the bobbing mound of plastic, only to ram the tip of my board directly into a giant boat, which seemed to literally appear out of nowhere, though it rocked there gently all along. That’s RP, my friends: the person standing silently by the elevator, unbeknownst to you, who suddenly says “hi”, startling you to a halt. The trickery of RP is that you see many things. And then you don’t. You think you’re gliding along just fine. And then you crash. You see just enough for your mind to convince you that you’re seeing the whole picture. But you’re not.

The mobility help of a guide dog or cane might seem confusing or unnecessary to some. But it isn’t. Mobility aides keep second-guessing to a minimum and prevent run-ins with mute elephants and strangers near elevators who come out of nowhere (and perhaps with silent sea vessels if they were useful in water). #blindpaddleboarding #guidedogsfortheblind

Continue reading “7 Lessons Learned on a Paddle Board”

9 Reasons I Love Driving My VI Daughters (and grandkids!) Places (guest post by Judy Derpack)

My mom sent me this list, and I read it on a day I really needed a different perspective.  After my kids’ ride to their theater rehearsal cancelled, it was too late to call an Uber, so I had to quickly ask a neighbor to drive them.  She was in the middle of cooking dinner for her family and seemed stressed by my request, and since inconveniencing people is always a fear, I felt like a complete burden.  If it hadn’t been one of their last practices before their big show, I would have just had them skip it in order to avoid having to ask.  Even when people tell me they are happy to be helping me out, I still feel like I’m imposing on their day.  Reading my mom’s perspective helped me to see that there are some benefits for the driver, or at least my generous mom chooses to see the benefits!  Even though I live too far from her to regularly enjoy the benefits of riding with her (lucky duck, Jenelle!), I am grateful to know all of the many reasons she considers her chauffeuring days a gift.  Thanks mom!  

Visual Description: Joy and Jenelle with their mother, Judy, decked out in snow gear with a snowy background.
Visual Description: Joy and Jenelle with their mother, Judy, decked out in snow gear with a snowy background.
  1. Quality time talking, planning family events and attempting to solve the world’s problems.
  2. Someone to share an “adventure” with.  My family knows my motto is “life is an adventure” (which I say every time I get lost driving somewhere).
  3. More chances to see my grandchildren.
  4. Better price shopping because two heads are better than one.
  5. I swear less at rude drivers.
  6. I get to research good parks to play at.
  7. It provides an opportunity for my old brain to practice multi-tasking.
  8. It reminds me to clean my car more often.
  9. It keeps me from taking the gift of driving for granted; I am very grateful. In a few years, I’m sure I will need someone to start “driving Miss Judy”.

Roja Reports: Halloween, Homeschooling and Heresy

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Visual Description: Joy and Roja with Joy’s husband and two daughters against a red curtain backdrop at Guide Dogs for The Blind Canine Heroes Wine Auction

It’s been awhile, I know.  Joy just keeps me hoppin’. Salt Lake. Portland. Leavenworth. San Fran. Most of those places had guide dog friends for me, though, so I’m not complaining.

Of course, on each of these trips, Joy planned a million things.  She even tried to get me on a giant bicycle in Golden Gate Park that she called a surrey.  It was terrifying!  Thank goodness her husband talked some sense into her.  i’ve always liked that guy, partly because he’s hairy like me, but mostly because he has common sense:  you don’t fit a 60 lb dog on skinny bicycle seats..

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Visual Description: Joy embracing a frighted Roja while her girls look onward on a 4 seat Surrey bicycle.

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Guest Post: Performing in Blindface

recent Salt Lake City gathering.

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Better Place: A Year With Roja

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One year ago today, Roja and I graduated as a team from Guide Dogs for the Blind in San Rafael, CA, and life hasn’t been the same since. In addition to getting Roja, this past year has been full of both amazing and difficult changes. From moving across the country and being apart from dear family and friends to growing in confidence as a mom, writer and teacher, Roja has been a constant companion who shows unconditional love (and licks!). Continue reading “Better Place: A Year With Roja”

Blind Snowboarding: How She Does It and More

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Photo description: Ashley holding her snowboard with her guide dog, Rick, by her side.

As soon as I started connecting with Ashley Nemeth from Mommies With Guides, I immediately noticed something refreshing about her: she is completely matter-of-fact about her blindness and her accomplishments.  She is almost totally blind, so as soon as I heard that she is an avid snowboarder, I of course, had to ask how she does it.  I think you’ll find her response quite interesting!  

Continue reading “Blind Snowboarding: How She Does It and More”

Why My Guide Dog Has Business Cards

When you have a guide dog, you sometimes feel like a famous person getting stopped frequently to sign autographs, minus the actual signatures and paparazzi.  When I first got Roja last year, I loved it when people stopped me to ask questions.  I didn’t mind if it turned into a longer conversation, as long as I was able to share all about Roja and Guide Dogs for the Blind.

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5 Things the Online Community Taught Us About Blindness (Happy 5th Anniversary Doublevisionblog!)

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So much has transpired in the last 5 years of blogging together.  Our perspectives have shifted dramatically.  If you look at one of our very first posts, “To Tell or Not to Tell”, about whether to disclose our vision loss in public, to more recent posts about guide dogs and canes, the shift is obvious.  But it didn’t happen overnight.  And it didn’t happen without a lot of input and support from friends we met in the online community.

2011-2012:  We’re not alone.  Between our readers, Facebook groups and fellow bloggers’ posts, we discovered a whole new “blogosphere” of people with Retinitis Pigmentosa and other conditions.  It was this connection that pushed us to keep writing, keep exploring, and keep discovering new things about ourselves and the unique world of vision loss.

2012-2013:  There’s a lot more to life than going blind.  If you look at our archives, you’ll notice this is the year we took a little hiatus.  Jenelle had her second baby, Joy started working on other writing projects, and life got busy.  We took a little break from both writing and reading vision-related blogs for awhile, realizing that there are so many more aspects to our lives than vision.  But when we picked back up and started writing consistently again, we were once again greeted with enthusiasm and encouragement.

2013-2014: The blind community is as diverse as the general population. Blindness is something that crosses all cultures, age groups, genders, and socioeconomic levels.  Consequently, the personalities, likes, dislikes, hobbies, views, etc. are extremely diverse.  This was the year we really began discovering the wide array of people in the blind blogosphere.  We have had the privilege of connecting with a multitude of interesting, yet often very different friends in the online blind community, including blind active mama friends, crafty comrades  adventurous, witty intellectualsartsy, clever New Yorkers, blind Canadian advocates, bold blind fashionistas, and let us not forget our guy-friend blogger and his amazing TEDtalk. And this just scratches the surfaces of interests, personalities and geographic locations.  IMG_3646

Even among assistive devices, people have their things; some like dogs, others canes, still others echolocation, some nothing, some braille, some hardware, some software. Under the umbrella of “blindness”, there are a select few who are in complete darkness (10 percent, like our friend and Youtube talent Joy Ross), others who have light perception, some shapes, some puzzle pieces, some just in daylight, some just at night, some large print, and even some who “drive blind“.

2014-2015:  The blind community has a strong, growing voice.  There is a growing voice in the blind community that is influencing culture.  This is the year we really started noticing an explosion of public awareness in the media: bloggers started popping up left and right (blind mamas, blind papas, blind professionals, you name it!).  These people have always existed, but it seems they have been growing in their public presence and confidence.  A major magazine, Real Simple, feature spread on blind moms with guide dogs, and reality tv producers have been seeking out blind talent.

Most of these efforts are positive and have the intention of educating the public, though this rise in media attention has created some controversy over whether people are overdoing it in regard to “inspiration”.  We in the blind community are, after all, just living our lives, and humans have a way of adapting to most anything.  It can be confusing when simple daily tasks are hailed as “amazing”.  On the other hand, there are unique challenges when it comes to sight loss, and the human capacity to overcome and move forward is, in itself, inspiring.  From our perspective, if it can help inspire others to do the same in their own lives, whatever their unique challenge happens to be, then it is noteworthy.

IMG_36472015-2016:  Shame is a common theme.  We used to think that we were the only ones who tried to hide our vision loss.  We have since discovered that this is actually a common phenomenon among people losing their eyesight.  Fortunately, amazing organizations such as the San Francisco Lighthouse for the Blind, are recognizing that this is an issue and have training, counseling and other programs available to help people get past the stigma.  “For those with changing vision, the daunting part is not usually the fear of darkness, but.the fear of admitting that you’re different.” – San Francisco Lighthouse For the Blind & Visually Impaired

 

The Invention of Benjamina: A True Story of How I Outwit the Cable Company

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photo description: A woman’s face (Joy!) is morphed with a man’s beard and hairline (Ben!). If you cannot visually see this photo, consider yourself fortunate, as it is fairly disturbing!

I was reminded of Benjamina last night when a cable salesman came to our door.  Fortunately, we now use Netflix and don’t even have to deal with Giant Cable Company any longer, but friends still teasingly call me Benjamina from time to time, especially when there is trickery involved. Please enjoy the legendary tale of Benjamina..]

45 minutes on hold.

5th phone attempt this week.

Just want to downgrade my cable.

Please, Giant Cable Company, hire just one more person. I’ll forgive you for routing the call to India. Please, just someone pick up the phone. I hate taking the phone into the bathroom with me. Please just pick up. Continue reading “The Invention of Benjamina: A True Story of How I Outwit the Cable Company”

Women On The Move: Joy Thomas (repost)

Originally posted on Bold Blind Beauty on June 7, 2016
View, comment on and share the original post here.

“I don’t understand why I didn’t get the job,”

I said to my supervising teacher, “You gave me such stellar reviews from my student teaching, and I feel like I described my teaching style and goals really well in my interview. I have a 4.0 GPA, and the students loved me!  Did the principal say anything to you about why he didn’t hire me?”

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Photo Credit: Morry Angell, Guide Dogs for the Blind

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