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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

 

Visual art has never come to me intuitively, the way writing has, though I don’t think I can attribute this entirely to my eyesight.  I’ve met talented artists who are legally blind and still have a strong sense of spatial awareness on paper, and there are artists who are color blind who use brilliant color schemes.  For me, however, any type of art class has always felt like a foreign land in which I don’t understand the cultural norms.
So I surprised myself a bit when I signed up to take a painting class. Continue reading

If you’ve ever wondered what the process of learning to use a cane might entail, then there is a book you should add to your personal library.  Mobility Matters: Stepping Out in Faith by Amy L. Bovaird provides a detailed account of an adventurous woman’s journey from denial to blind rehab services, including braille and cane training.  

Audiobook  Continue reading

View and share “DoubleVisionBlog Fight Song” Video on Facebook

Hi DoubleVisionBlog friends! I’ve been secretly working on this video for the past month as a surprise for Jenelle. Happy Blindness Awareness Month!

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In honor of Blindness Awareness month this October, Joy shares her journey of shame, vulnerability and courage. With both humor and insight, Joy and her twin sister, Jenelle, share their stories of life with RP at doublevisionblog.com. Continue reading

The anticipation was almost more than I could bear. I had been planning the surprise for 4 months, and it seemed August 8th would never arrive. I nearly ruined the surprise on several occasions, and it began to feel like it could burst out of my mouth at any moment without warning. I told very few people about the surprise in hopes of containing it.

Finally, the date arrived, and my younger sister, Jillian, and I set out on our trip to unveil the big surprise. Continue reading

My locket always reminds me to grab my cane. But I don’t always remember to wear my locket.  When my friend Emily first gave it to me last summer, in memory of a crazy, divine experience , I wore it a lot, and I carried my cane a fair amount.  But over time, I’ve come up with all kinds of excuses not to wear my locket.  None of them good ones.

What if it falls off my neck, and I lose it?  What if it doesn’t go with my sweatpants?  What if I become the weird locket girl who doesn’t even shower without it? Continue reading

IMG_2836A bronze locket is just a shimmering piece of metal in the same way that a white cane is just a long plastic stick.  Neither of them hold any meaning.  Unless you attach it.

The story of my locket begins in a silent monastery in Kentucky, amid rolling hills, Trappist monks, and the clinking of ice water carried steadily on a tray, almost a year ago. Continue reading

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I hadn’t set foot in my high school since 1997, when I graduated (eeks, I feel ancient typing this!)  That is, until 2 weeks ago when I heard they were putting on the play, “The Miracle Worker”.  My 3rd-grader had read all about Helen Keller last year in 2nd grade, and she was fascinated with the story of Helen and her teacher, Annie, so my mother-in-law and I decided to take her and my niece to see it. I had also heard that there would be a blind actress in the play, making it even more authentic, and piquing my curiosity. Continue reading

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Jenelle and I telling our kids bedtime stories on a recent shared vacation

My twin sister and I have always had a strong connection despite years of people comparing us to those Sweet Valley High books we grew up reading (yes, I’m clearly the nerdy journalist, Elizabeth, and she is the popular cheerleader, Jessica).

People have always asked us whether we have ESP or any shared twin language. While for the most part, the answer is no, I did awake with strong stomach pains in the middle of the night without knowing that she was going into labor 2,000 miles away and sat straight up in bed the moment she had her second child, on the shared birthday of my older child. Beyond that, we have no known twin quirks. Continue reading