When the topic of vision loss in the workplace comes up, a discussion about suitable careers for people with vision loss typically ensues. These career options can sometimes feel limiting because we live in a very vision-centered society. Reflecting back on my past employment experiences, I have definitely not chosen visually easy ones.

This is not at all to pat myself on the back in the bravery department, as I honestly didn’t really think the visual challenges through until I was thick in the midst of them. I simply followed my interests, which is how I ended up as a foster care case manager at age 22, a position that required more driving than most UPS delivery employees. For a person without a driver’s license, that’s a bit of an issue, especially since it was before the days of Uber in a suburban setting where “mass transit” involved a fleet of soccer moms in mini vans. The position also involved transporting minors that were wards of the state, so I couldn’t exactly pick them up in taxicabs, though the cab fares probably wouldn’t have covered my social service salary anyhow. I had to get creative and ended up on trains (for the occasional urban trips), planes (for court-ordered, out-of-state sibling visits), and automobiles of individuals willing to be fingerprinted, including my generous husband!

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Photo description: Joy sitting on a chair, speaking to a group of children around her on the floor in a classroom.

Eventually, my interests and sanity needs led me to the classroom, which eliminated the transportation dilemmas but of course presented challenges of its own; as there are no training handbooks for managing a classroom of hormone-hyper 7th graders using non-visual techniques in an educational setting accustomed to visual methods such as hand raising. For someone with 4 degrees of peripheral vision, spotting a raised hand in a packed classroom is a bit like playing Yahtzee: there is a touch of skill involved but mostly a whole lot of luck. Of course, I created alternative management methods, such as assigning a class “caller” or giving students noisemakers in lieu of silent hands (in hindsight, not my brightest idea, but teachers in their 20s have to learn the hard way sometimes).

Fast forward to this past spring, when I was checking my e-mail before going to bed (a habit I’m trying to break) and saw a message that made me sit straight up in bed and elbow my husband. “Oh my gosh, babe, listen to this new internal job posting!” It was for a “student support coordinator” at the charter school where I was working part time. The position said it involved meeting with parents and teachers of struggling students in order to recommend interventions. But the part that most drew me to the position was that it involved creating 504 plan accommodations for students with various disabilities.

“Wow,” my husband elbowed me back, “that sounds perfect for you. You’ve been dealing with accommodations your whole life.” He was right, and as a general education classroom teacher, I always felt a certain connection to the students who had extra challenges, though I never wanted to be a special education teacher. I’ve always identified more with students who are completely capable of doing grade-level work when given the right accommodation because it’s so similar to my own story. I can perform just as well as any classmate or co-worker when accommodations are in place.

I began drafting a cover letter that very night (hence, the reason you should never check e-mails before bed unless you plan on staying up until midnight). I notified my current director, who wrote a recommendation letter, and started prepping for the interview.

Since the school is one of the largest charter schools in California with offices in various cities, and the Director for the Support Team was in Northern California, the interview was set up as a virtual video meeting in the videoconferencing app Zoom. I had to log into it in order to meet with a team of interviewers. The virtual interview setting brought some relief, as I didn’t have to worry about finding which chair to sit in, which person to look at or whether to bring my guide dog or cane, but some challenges arose for me as soon as the interview began. My internet signal was acting up, so my voice was cutting in and out. The director suggested I call in while still keeping my screen on in order to see the documents they were sharing. My heart immediately began to race as I attempted to dial in while everyone waited. Fortunately, I had done a “practice” Zoom session with my assistive tech guy, and he had shown me how the one-tap iPhone number automatically entered the access code for me, so I didn’t have to worry about fumbling with entering a code. Simultaneously, my mind raced over whether I’d be able to see the documents they were sharing with me. I had mentioned my visual impairment in my cover letter, but wasn’t sure who had read the it and couldn’t find my words to bring it into the conversation. (Looking back, the shared screen documents seem like an obvious segue.)

Even though I’ve written posts and published articles on the benefits of hiring people with disabilities, old stories of inadequacy and blind shame surface at the most inconvenient times.

The team gave me several scenarios, which they both read aloud and put up on the screen I tried zooming my screen in but still could not read the scenarios very well, so I tried to just focus on their words even though my brain felt engulfed with fog. I took very long pauses and admitted that I didn’t even know what tier 1 and 2 interventions were! The only question I felt completely confident and articulate answering was the difference between modifications and accommodations.

My stomach muscles knotted up as I realized I was majorly stammering through my answers, talking in circles. Was I making any sense at all?

I felt relief when the interview ended but immense disappointment over how it had gone.

So I was completely shocked the next morning when I received an e-mail from the director, saying she’d like to talk about the position in more detail. It turns out that the interview team liked that I had some background in social work in addition to education. This is a very involved position,” she said, “it’s full time, and there’s a lot to it.” She suggested I take the weekend to think about it and consider the impact on my current obligations.

Had I just been offered the job?!

I mulled it over for about 5 seconds before deciding it was for me. I didn’t overthink the visual challenges that surely were ahead.

To be continued…

 

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In honor of our 40th birthdays, we’ve come up with 4 lessons we’ve learned over our 40 years of growing and living with sight loss.

Cheers to 40!

  1. Community is essential. We live in a society in which independence is highly valued and misunderstood. Going it alone is often idealized while interdependence is minimized. We value connection and we love our tribe
  2. Knowing when to lead and when to follow is part of finding your ease. Mobility for people with vision loss can bring up tricky questions like: Should i use a cane even though I can see decently well at times? Would a guide dog help me move about more quickly and easily? Should I take someone’s arm as I walk into the restaurant tonight? How should I respond when someone tries to grab my arm and steer me around or offers unsolicited help? Learning when to lead and when to follow is part of the journey.
  3. Insight is one of the strongest forms of seeing. Our society places a lot of importance on physical sight, yet when we use our “third eye” to look inward, we can see ourselves and the world around us in new and beautiful ways. It takes a little bit of silence, a little bit of stillness and a whole lot of practice to find vision in the non-physical.
  4. Dishwashers should never be left open. Our shins have 40 years worth of stories to tell.

I come from a large extended family. I am one of 4 children and my mom is the oldest of 9, so warm bodies have never been sparse on the holidays, even after half the fam moved to the Northwest. And my husband’s family, though initially smaller, has grown exponentially the past few years, both with new littles and adopted extended members, so no shortage there either. I also come from families of doers and helpers on both sides— everyone pitches in by bringing a dish to pass, assists with food prep before the meal and form s a cleaning assembly line of sorts afterwards. Continue reading

This week, I had the pleasure of co-presenting at the Spring ADA Paratransit Conference with my friend and fellow blogger Keith Edgerton.  I felt instantly at ease alongside this seasoned public speaker as we shared our experiences of using public transportation with visual impairment.  Each year a transit authority from one of Washington’s Counties puts on the event.  39 out of 40 counties were represented at this conference held in my hometown of Leavenworth.  Talk about a short commute!

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Photo Description: Jenelle (left) and Keith (right) standing outside in Leavenworth with the Cascade Mountains in the background. Continue reading

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Joy and Jenelle laughing and holding hands at Aliso Creek Beach in Orange County, CA.

Loyal, lovely readers, our apologies for the scarce posts in recent months.  We’ve received emails from some readers checking in on us, and we appreciate your encouragement.  You, our courageous tribe, are why we will continue to write amidst bustling schedules.  And we thank you for taking time out of your busy lives to stop by Doublevision blog.

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Joy and Jenelle’s young children smiling in front of a fountain.

We are actually writing this post together IN PERSON, as Jenelle is visiting Joy in sunny SoCal for a couple weeks. Our kids are getting lots of cousin time building sand castles and soaking in Vitamin D while we catch up and enjoy our time together.

Today we’d like to loop back to a topic that everyone LOVES to talk about (insert sarcastic undertone here). We’ve written posts on it and spoke on a podcast about it and its relationship to blindness. While it’s not something that most people deal with daily, it does have a way of Continue reading

Joy and I took a little “holiday” from blogging at the end of 2016.  We were busy enjoying a family visit together in the Northwest filled with snow shoeing, aerial yoga with our girls (including Roja!), and ringing in the new year at “pretend midnight” for the kids and then official midnight for the adults.

Photo Description: Scenic winter picture of our family snow shoeing.

Image may contain: 8 people, people smiling, mountain, sky, snow, outdoor and nature

Photo Description: Aerial yoga swings hanging from the ceiling with red mats underneath.  Roja is laying on a red yoga mat in the left corner of the picture.

Fast forward to January.  The egg nog is long gone, the holiday decor packed away, and it’s back to the routines of daily life.  In many ways it feels refreshing.  A new year offers new beginnings, and yet old habits often follow us into new years. I’m choosing to share one of my on-going challenges knowing that many of us struggle with our inner critic.  I invite you to try some self-compassion exercises along with me as a step towards a healthy 2017.

This “self-compassion lesson” begins with a story followed by some self-compassion exercises.

The sun streamed brightly through the trees, illuminating the large piles of crisp white snow as I rushed out the front  door.  I chatted distractedly with Joy on my cell while grabbing the long blue sled from the front porch and tossing my son’s after school snacks and snow gear onto it before zipping off.  Joy and I finished up our conversation as I walked the 1/2 mile to Benny’s preschool.  I quickly plucked his lunch box from the sled to prepare for his famished after school snack requests, and discovered that the bag of snow gear I had packed him was no longer in the sled.  I’ll just retrace my steps and find it on the way home, I thought, and signed Benny out of school.  I knew finding a white plastic grocery bag against white snow would be challenging, but Benny is a good little helper and I figured we’d stumble on it eventually.  But soon we were home with no bag of snow gear.  My husband. who works from home most days, had just started his lunch break and offered to take the car out and look for the missing gear.

Meanwhile, I started making lunch, but was so distracted with texting friends and neighbors about the missing items, that I forgot about the sauce simmering and burnt it to a crisp.  My husband used his entire one hour lunch break searching for the items with no luck.  I felt defeated as I recalled how much money snow gear costs, especially the brand new high quality Burton mittens that just arrived from Amazon the day before.  I could feel the tight knots in my empty stomach as I scrounged around the fridge, trying to put together a new lunch, and I snapped at my husband when he asked me a question.  He retreated back to his home office, likely relieved to escape the presence of his edgy wife.  Tears started rolling down my cheek as I thought about how much I had screwed up that day.

My pity party was interrupted by my phone ringing.  It was my Uncle Mark calling.  Joy has written about our uncle in previous posts.  He calls each day from his room at the nursing home to read us the AA prayer of the day.  Though Mark’s developmental disability keeps his mind at the age of an adolescent, his intuition often exceeds his mental capabilities.

I sniffled as I picked up the phone. “Hi, Uncle Mark.  I’m kind of having a bad day.”

I proceeded to tell him about my lost items, burnt lunch, and cranky behavior..

“I’m sorry you burnt lunch.” he stated in a flat tone.

“Thanks,” More sniffles.

“I’m sorry you lost your son’s snow pants.” he continued, still mono-tone.

A few more tears rolled down my cheek as I muttered another “thanks” into the phone.

“I’m sorry you lost your son’s hat.” he offered.  Oh man, is he going to say sorry for every damn item I lost?
I wondered to myself, feeling grumpier by the second.

“I’m sorry you lost your son’s new mittens.” he added.

I was about to mutter another bland thank you when I heard him say, “But you’re still a good mom.”  Now the hot salty tears came flooding out of my eyes as I sobbed,”Thank you, Uncle Mark! I really needed to hear that right now.”

Uncle Mark’s words cut right to the heart of why I was crying.  I wasn’t shedding tears over lost stuff, or martial tension, or burnt lunch.  I was feeling inadequate as a mom, and I was beating myself up over my mistakes.  Mark’s simple affirmation caused me to remember all that I have learned about the importance of self-compassion.  I first learned this concept from Brene Brown and Kristen Neff, and was able to put it into practice at the Daring Sisters women’s retreat last summer.  For yesterday’s fiasco, I chose to write myself a self-compassion letter, which is far less complicated and hokey than it may sound.  Other times, I’ve chosen a guided meditation.  There are lots of great tools to choose from on Dr. Neff’s website. 

Below is a step by step guide to writing a self-compassion letter that I found on Berkeley’s Greater Good In Action site.

Time Required:15 minutes. Try to do this practice once per week, or at least once per month

First, identify something about yourself that makes you feel ashamed, insecure, or not good enough. It could be something related to your personality, behavior, abilities, relationships, or any other part of your life.

Once you identify something, write it down and describe how it makes you feel. Sad? Embarrassed? Angry? Try to be as honest as possible, keeping in mind that no one but you will see what you write.

The next step is to write a letter to yourself expressing compassion, understanding, and acceptance for the part of yourself that you dislike.

As you write, follow these guidelines:

  1. Imagine that there is someone who loves and accepts you unconditionally for who you are. What would that person say to you about this part of yourself?
  2. Remind yourself that everyone has things about themselves that they don’t like, and that no one is without flaws. Think about how many other people in the world are struggling with the same thing that you’re struggling with.
  3. Consider the ways in which events that have happened in your life, the family environment you grew up in, or even your genes may have contributed to this negative aspect of yourself.
  4. In a compassionate way, ask yourself whether there are things that you could do to improve or better cope with this negative aspect. Focus on how constructive changes could make you feel happier, healthier, or more fulfilled, and avoid judging yourself.
  5. After writing the letter, put it down for a little while. Then come back to it later and read it again. It may be especially helpful to read it whenever you’re feeling bad about this aspect of yourself, as a reminder to be more self-compassionate.
 Another tip I learned from Dr. Neff is to add “I love you. I love you. I love you.” at the bottom of your letter.

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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

 

We’ve done a lot of Q&A posts here at Double Vision Blog, but this is our first interview with an eye doctor.  I’m pleased to introduce Dr. Kierstyn Napier-Dovorany, OD, FAAO, Associate Professor, Western University of Health Sciences, College of Optometry   I didn’t just choose a random eye doctor to interview.  This is “Kier”, a dear friend going all the way back to our days at Naperville North High School. I love that I can ask her anything eye-related and she will respond with experience, research, and honesty. Continue reading

There’s something deeply satisfying about completing a stack of thank you notes.  So I can’t help but continue to write more.  Hope you enjoy reading them as much as I enjoy writing them!

Thank you mannequins, uh, I mean, excuse me.  I mean, I’m sorry I bumped you.  Wait.  You’re not a real person?

Bashfully,
Lady Who Was Not Just Talking to an Inanimate Object 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