IMG_3648

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

Many of us spend the final weeks of the year in a whirlwind of plans, often leading to stress.  And after shouting “Happy New Year!”, we let out a long sigh, in an attempt to release the stress from the previous year.  We take a deep breath, and hope to breathe in a new sense of purpose, balance, and joy.  

Some of us make new year’s resolutions, and join a gym, or throw out all the crappy food from the pantry.  While others write down goals, hopes, and dreams for the coming year.

Most years, this is my pattern, too.  I try to “get through” the holidays, and then regroup in January.  But this December, I did things a little out of order.  I still bought Christmas presents for my loved ones, attended holiday gatherings, and watched endless Christmas movies while wrapping gifts.  But just when my busy month was getting started, and I began feeling anxiety between sips of eggnog, I made a conscious decision to carve out daily me time.   Continue reading

It was a bleak Seattle winter morning several years ago, and I shivered as I climbed into the yellow taxi cab.  I was dreading my appointment at the WA Department of Services for the Blind (DSB) for many reasons, but I had finally decided to see what kind of services might be helpful to me.  They had sent me a voucher for the taxi ride, so that transportation to DSB would be direct and free.

I handed the voucher to the cab driver, and noticed him eyeing me suspiciously in the rear view mirror.  I glanced down at the time on my phone to make sure I would be to my appointment on time.  When I looked back up, I saw that he was once again glancing at me in the rear view mirror.

I instructed myself to stop being paranoid, and focused on checking Facebook updates on my phone for the remainder of the ride.  As the driver pulled into the DSB parking lot, he asked in a thick Indian accent, “So, are you blind?”

I wasn’t expecting his question, so I paused briefly before saying, “Um…yes, I have a rare eye disease that is causing me to lose my sight.”

He did not say anything back to me, but shook his head from side to side, and made a “tisk, tisk tisk” sound, like he was tapping his tongue on the roof of his mouth.  I instantly felt my face flush with embarrassment.  I wasn’t sure if he was pitying me or shaming me.  I was relieved to step out of the taxi and out of the driver’s seemingly judgmental presence.  I didn’t give the incident further thought until recently when I read For the Benefit of Those Who See: Dispatches from the World of the Blind. Continue reading

BAM! Not only is October Blindness Awareness Month, but it is also Disability Awareness Month.  Below is a post written by Susan, author of Adventures in Low Vision, who kindly agreed to let us share this brilliant post on our blog this month.  

I was playing with my cat as a kid still in single digits on the kitchen floor. Twenty minutes passed. He decided he wanted to play elsewhere. The orange tabby was not quite fast enough. I scooped him up, looked at his face and called him a silly bastard.

Mom heard me. She was quick to admonish me by asking, “Do you know what that means?” I bet my ears turned red. My embarrassment grew when, as parents do, she gave the word’s definition. I stopped calling the cat a bastard.

Words have meaning. Handicapped. Crippled. The R word. Blind. Visually impaired. A person with a disability. Where do words and phrases like these come from?  Check out the etymology of handicapped and see if you still want to refer to people with disabilities as handicapped. Continue reading

I just finished reading To Kill A Mockingbird.  Of course this was not my first time reading this modern classic, and it likely won’t be the last time I find myself engrossed in Harper Lee’s masterpiece.  The story has not changed in the 18 years since I last read it.  Yet, it somehow feels new to me.  While Scout, Jim, and Dill feel like long-lost friends, they also seem different from how I remember them.  While I recall feeling infuriated by the prejudice and injustices in the story, my understanding and analysis of these events has more depth than it did as a teenager.  My own life experiences over the last two decades influence how I interpret this powerful novel. (Side note – feeling so damn old as I write this) Continue reading

FullSizeRender 2

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

My sister and I started Doublevisionblog to reach out to people facing blindness from RP, and to educate their family and friends. In the process, we ended up educating and connecting with our own family and friends in ways we had not imagined or originally intended

Connection with others, especially when facing major life challenges like blindness, is like salve for the human spirit. It soothes and uplifts and even heals.

The readers that we have connected with are now part of our story and will forever be threaded into the pain and hope of our plot lines. Continue reading

liebsterawardIf there’s one thing writers really need, it’s community with other artists. I have this amazing friend, Emily, who shares my love of writing. We belong to the same writer’s group and have fun drinking tea and/or wine over topics involving creativity, editing, publishing, and the like. She writes a hilarious blog and recently nominated me for a Liebster award. Thanks Emily, for your encouragement and for being someone with whom I can share writing joys and frustrations and engage in super-nerdy conversations.

As part of my acceptance of the Liebster, I had to answer the following 11 questions from Emily: Continue reading

Orchard - The New Artists Discussion
I’ve always been hesitant to call myself an artist, or even more specifically, a writer. Since I don’t earn a living writing and am not famous, two of our culture’s main measurements for success, I’ve never thought my art really matters.
But watching some artist interviews during “The New Artists” series at The Orchard the past few weeks has helped me realize that my art does matter.  It not only matters in my life, but it matters in the lives of others, no matter if it’s just a handful of readers or tens of thousands. Continue reading