Image credit: http://crystalcartierphotography.com/

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

Just a quick post to share the happy news that I was awarded a first place scholarship from the National Federation of the Blind (NFB) of Washington State.

Photo Description: Marci Carpenter, President of NFBW and Jenelle Landgraf posing for a picture at the Evening Banquet.

Last weekend I attended the NFB’s state convention in Olympia, WA.  I was invited to attend as a scholarship finalist after applying for the scholarship program in early fall.  It was exciting to meet the other scholarship finalist, Jennifer Rotz, who is pursuing a degree in Education and hopes to teach at the Washington State School for the Blind.  I was instantly impressed by Jennifer’s resilient spirit and passion for teaching children.

I also enjoyed meeting a variety of other professionals at the convention, people who embody the NFB’s message of, “blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. You can have the life you want; blindness is not what holds you back.”

There is so much more I’d like to share about the convention, but this grad student needs to get back to studying!

On October 15th, we recognized “National White Cane Safety Day”.  In honor of this day, I wrote an article about my first time using a white cane that was published in The Mighty, and I wanted to share it with our readers as well.

Jenelle with her twin sister, both standing against a brick wall with their matching canes.

My First Time Using a White Cane to Navigate With Low Vision

My cane trainer and I had arranged to meet at a Starbucks in West Seattle, so my husband dropped me off on his way to work. I watched through the window as another car pulled into the space where his Prius had just been. A lady who looked to be about my age, in her mid 30s, stepped out wearing a cute professional-looking outfit with pretty long brown hair she had likely curled at the ends with hot rollers. She glided casually into the coffee shop to order her beverage, and I felt terribly envious of this stranger. While I sat waiting to meet my cane trainer due to my deteriorating peripheral vision, I imagined her on her way to some fabulous job looking perfectly put together, and driving her own car wherever she pleased.

Her carefree independence stood in stark contrast to my need for a tool that would help me to navigate. I glared inwardly, recalling the diagnosis of retinitis pigmentosa at a young age, a disease that slowly takes away peripheral vision leading ultimately to complete blindness. I pushed the angry thoughts away as I pictured my two young children waiting for me at home, needing an independent and confident mommy to care for them.

I decided to check my email on my phone to distract myself from my jealousy. As I scrolled through emails, I heard a tapping sound behind me. My trainer, Marci, said I would be able to recognize her right away because of her long cane that would be tapping along. I quickly jumped to my feet, turned toward the woman holding the long stick and said, “Marci?” The woman ignored me, and chatted with another woman about the busy morning. My eyes traveled down to the bottom of the stick, and I realized it was a broom. She was a Starbucks employee, taking a brief break from sweeping to chat with a customer. I quickly sat back down, hoping no one had seen or heard me asking for Marci.

The real Marci arrived with her tapping cane a few minutes later. I wasn’t sure if she would be completely blind, but I could immediately tell she had some vision from the way she made eye contact with me. She looked to be in her mid-50s with gray hair peeking out of her nice summer gardening hat, white pants, and a gray shirt. We sat and chatted until Marci suggested we move outside to continue our discussion and start the training. We stood up and made our way to the door. I had my cane out for the first time, and followed Marci out the door, not sure how to use this long white piece of aluminum in my hand.

Outside I felt thankful for the pleasant weather, and enjoyed getting to know Marci as we sipped our beverages. She showed me some cane basics, and I began to think this day would be better than I had anticipated. We decided to continue our training around the neighborhood, but needed to throw our garbage away before heading out. Marci led the way back into Starbucks to find a garbage can.

As soon as we entered, I could feel all the eyes on the two women with the long white canes. My ears perked up, keenly aware of every conversation we passed. “Really makes you thankful for what you have, doesn’t it?” I heard one woman remark as we reached the garbage can. There was no doubt in my mind that she was referring to Marci and me. Another woman was joyfully explaining the canes to her small child, “…and so now you know how people who can’t see can walk around by themselves” she was saying in the same tone that I had used dozens of times to explain difficult subjects to my daughter, trying to sound casual and cheerful. And as we walked out the door, I heard an older gentleman telling his friend about a blind woman he once knew. Our two minute trip to the garbage had sparked all sorts of conversations. I knew that was not a bad thing, but it didn’t feel good either. I felt completely exposed, and I wanted to hide.

As Marci and I made our way through a West Seattle park, I saw lots of moms about my age with strollers and toddlers that reminded me of my sweet little 2-year-old boy waiting for me at home. Some eyed us suspiciously while steering their children out of our path, while others offered a friendly “Hello, ladies! Beautiful day, isn’t it?” I wondered if the friendly ones would have been friendly if we didn’t have canes, or if the suspicious ones would have looked suspicious if we didn’t have canes. “I’m just like you!” I wanted to shout at them, “If I had my stroller here, pushing Benny along while he munched on Cheerios, you would not be able to tell I am different.”

I soon learned I had to pay less attention to what everyone around me was doing, and start focusing on the task at hand. Learning to walk with a cane took more concentration and coordination than I had envisioned. Right foot goes with left tap, left foot goes with right tap, side to side sweep, but not too high. Right foot, left tap, left foot, right tap, I repeated in my head and tried to stay focused.

“You’re moving your arm too much,” Marci coached me, “You really only need to move your wrist, and keep your arm out in front of the center of your body.” This felt like a lot for me to remember and it didn’t come as naturally as I had hoped it would. Marci was kind and encouraging towards me. She also had high expectations and knew instantly if I was not doing the techniques correctly.

“You’re still moving your arm too much.” she would correct me. “You need to move your arm to the center of your body,” she continued. “You’re tapping and stepping on the same side.” It reminded me of the one time my husband had tried to give me golf lessons, correcting every element of my form. “Keep your head still,” he would say so many times, and I was convinced I was keeping it still as he continued to correct me, to the point I finally shouted “I am!” at the top of my lungs, and we both agreed golf lessons weren’t the best activity for our marriage.

Likewise, I was certain I had it all down, and then I would hear Marci behind me, “You need to keep your arm still.” I was tempted to yell “I am!” a few times, but decided that was not the best way to thank a generous person who was donating her time to teach me. Instead, I offered to treat her to lunch to show my gratitude.

As we walked to the restaurant, side by side, canes in hand, it was like a magical “parting of the red sea.” I was elated not to have to dodge people and objects. Most people just quickly stepped out of our way, avoiding us and our canes and giving us lots of space. It was such a nice change from frantically trying not to bump into bodies that seemed to appear out of nowhere. But then I heard a loud voice.

“Ladies! Ladies!” a woman to our right was yelling in a commanding voice, “There’s a bunch of construction up here to your right, so you’re going to want to move to the left!” she announced importantly as she slightly pushed me toward Marci. “We’ve got it — thank you!” Marci replied. She had warned me about the special “helpers” who would think it’s OK to touch a complete stranger. Still, I felt so uncomfortable and frustrated by this. I could see the construction and the orange cones, and even if I couldn’t, my cane and ears would have alerted me to both. On the one hand, I knew the woman was just trying to be helpful. But on the other hand, I felt as though her helpfulness was telling me “You aren’t capable of navigating with your cane.”

I also knew part of my irritability was due to the fact that I really needed to eat some food, so I was delighted when we arrived at the sandwich shop for lunch. It was a casual sandwich cafe where you ordered up at the counter, seated yourself, and then collected your food when they called out your name. These type of restaurants often gave me anxiety because there was a lot to navigate in line, reading the menu from a distance, and then finding a table while carrying a tray full of food and grabbing your own beverage. So I was pleasantly surprised when we entered and an employee immediately came over to us, saying “If you’d like to find a table ladies, I’d be happy to go over the menu with you and bring you your food and drinks.” His helpfulness felt like actual help, and the way he spoke to us was not demeaning or belittling at all. He was making it clear that he knew we were capable of finding our own table, and yet he was trying to make the process of ordering and paying for our food less strenuous.

I was exhausted by the late afternoon. It reminded me of traveling overseas, and how tired I would feel at the end of each day after trying to converse in a foreign language. During these travels, I felt a strong sense of relief when I stepped into my hotel room and could turn “off” from focusing so hard on seemingly everyday tasks. I was looking forward to that familiar feeling of relief as I boarded the bus home.

My first time felt overwhelming, and exhausting. But I definitely wanted to try again. Each time I used my cane after that day, it got easier and more fluid. I soon found myself moving through life with newfound confidence and freedom.

Continue reading

(repost from an article Joy just had published at crixeo.com)

Disabled_JoyThomas

OCTOBER IS NATIONAL DISABILITY EMPLOYMENT MONTH (NDEAM). HERE’S WHAT EVERYONE SHOULD KNOW ABOUT THE VALUE DIFFERENTLY ABLED PEOPLE BRING TO THE WORKPLACE.

I recently returned to the field of education after an eight-year stay-at-home-mom hiatus. In addition to the typical reentry jitters and pondering over whether my favorite coral blazer is still in style, some more significant questions surfaced as I signed my contract: How will I travel to trainings and meetings after the closest bus routes to my house were just cut? What if one of my students or parents is allergic to my guide dog? And how many sessions with my accessibility specialist will it take for me to confidently use all the technology required to do my job?

As a person who is legally blind, these are legitimate questions to ask, but they’re also relatively straightforward to solve, especially when compared to the invisible barriers people with disabilities face…

…read more

 

My first day of school jitters reminded me of being a kid.  I barely slept a wink the night before classes began.  My younger sister is graciously allowing me to crash on her couch while I’m in Seattle for classes every 3 weeks.  And she even made me a “first day of school” sign along with all sorts of school supplies and snack goodies waiting for me when I arrived at her apartment.  Sisters are the best!!!

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One of the questions I’ve been asked most about going back to school is, “What does MSW mean?” Master of Social Work is the full title of the program, and the field has a long and interesting history (which I am totally geeking out over, so if you have a few spare hours, I’ll take you on a trip down the memory lane of social work compliments of my required course readings).  Social work is often one of those obscure fields of work that leave people who don’t work in the field wondering what exactly it’s all about. While some consider it a noble profession,  others have negative impressions based on personal experiences or observations from the media.  Some have accused the field of having a bit of an identity crisis since practitioners work in a wide variety of roles.  From my perspective, the social work field is appealing because of these vast opportunities including leadership and direct service roles, research, policy, “licensed” clinical work, and many opportunities to affect social change. Continue reading

This is one of those topics that, in an ideal world, would not need special attention.  But since we at Doublevision blog believe strongly in educating the public and bringing awareness to blindness related issues, this post is necessary.  All these points are based on real actual situations that have happened to us or someone we know.

“How did you get here?”
In a society that highly values independence, most adults have their own personal vehicle and cannot fathom otherwise.  For those who cannot drive, alternate modes of transportation are necessary, including public transportation, Uber, rides with family / friends, and walking.  We often need to put more thought into our transportation than simply pulling out the car keys, but we manage to make it work.

Joy recently had this experience at a work training in SoCal.  She walked into the training session where a handful of other teachers were sitting, waiting for the morning to begin, and the trainer noticed her guide dog. After saying hello, she immediately asked how Joy had gotten there.  While other teachers were met with “How are you?” or “Good to see you.”, Joy was asked to explain her mode of transit while the group sat listening.

(Note: If you are truly concerned with a person’s transportation needs, kindly offer a ride.)

“Do you know where you’re at?”
Chances are, yes, the person holding the cane or guide dog harness is fully aware of their location and surroundings.  Our friend Keith, fellow VIP, recently had this experience with a stranger at a train station marching up to him and asking if he knows where he’s at.  Keith, being the light-hearted guy that he is, was tempted to reply. “Do you mean like emotionally?”

(Note:: If someone looks lost, blind or sighted, the kind thing to do is say, “Hello, do you need help with directions?”)

Silently wave and keep going, hoping they sense your presence and identity.
Waving is an automatic social gesture that comes so naturally that it is often hard to control the wave and dash mentality.  But it is possible to both wave and offer a short greeting.  I honestly did not realize how many waves I was missing until my daughter was old enough to talk, and started asking things like, “Why did you not wave back to the neighbors when they passed by us?” It may not seem like a big deal to wave at a person who can’t see you anyways, but it matters.  Social customs of greeting one another are part of how we as humans feel connection in our society.  On the flipside, no need to shout and wave obnoxiously to ensure the person has your attention.

(Note: A simple, “Hey, it’s John. How’s it going?” works wonders.)

“Are you blind?”
Asking someone with a cane or a guide dog whether they are blind is like asking someone in a wheelchair if they are paralyzed. It’s not how anyone wants to be greeted, and is a very awkward conversation starter. To clarify, we are usually open to questions, especially if someone is truly curious about vision loss, but a blunt question like that right off the bat feels out of place.

How do most people with sight loss want to be greeted? The same as most people, with warmth, kindness, and a few words.

 

 

(Repost from article by Joy Thomas from Crixeo Magazine)

AN ACCIDENT UNLOCKED JASON PADGETT’S MATHEMATICAL AND ARTISTIC POTENTIAL, MAKING HIM ONE OF ONLY 40 PEOPLE IN THE WORLD WITH ACQUIRED SAVANT SYNDROME.

Jason Padgett, who has acquired savant syndrome, says he wouldn’t change any of the pain he underwent after being beaten, as he now sees the world in an overlay of geometric fractals that he believes hold answers to some of life’s biggest questions.

With the popularity of shows like The OA, The 4400 and Second Chance, questions about the human brain’s hidden abilities surface, leaving many of us to wonder what price we’d pay to unlock hidden neurological gems. Though these shows are fictional, the brain science behind some of them is not. And there are real-life people to prove it.

Read more…

Acquired Savant Syndrome: Meet an Accidental Genius

(Repost of article by Joy Thomas from Crixeo Magazine)

MANY PEOPLE SEE THE RELATIONSHIP BETWEEN SERVICE DOG AND HANDLER AS A BEAUTIFUL, SYMBIOTIC BOND, BUT SOME ANIMAL RIGHTS ACTIVISTS VIEW IT AS HARMFUL. ARE SERVICE ANIMALS ‘HAPPY’ WORKING? WE ASKED THE EXPERTS.

Amanda Bagwell-Chase, a self-proclaimed animal rights activist, proudly wears a T-shirt displaying a lion’s paw print next to a human handprint, referring to Cecil the Lion and symbolizing unity between animals and humans. But on several occasions Bagwell-Chase has been the target of public ridicule while wearing this shirt. The reason? She wears it while holding the harness of her service dog, Patsy.

Read more…

Service Animals: A ‘Chosen’ Career Path or a Life of Servitude?

The question of “How are your eyes?” pops up from time to time at a social gathering with friends or a holiday meal with extended family.  I don’t find this question rude or intrusive, but I’m never quite sure how to answer.  Especially when the question often seems to come out of nowhere – not even closely related to the last topic of conversation.  Is the question being asked as a polite “How are you?” to which a “Fine” or “Okay” is expected.  Or is the questioner hoping for a detailed description of my last trip to the optholmologist? Did they see me accidentally dip my finger in the salsa bowl, thus prompting them to wonder how much more vision I’ve’ lost since they saw me last?

My typical response goes something like, “Well, RP is like getting older – it happens so slowly over time that you don’t notice the changes on a day to day basis.  Yes, my eyes are worse than they were 5 years ago, but I can’t exactly define how worse.” The questioner typically changes the subject as abruptly as they started it, leaving me to wonder if I’d given a clear enough answer.

A recent trip to a retina specialist at the Casey Eye Institute provides an updated answer to the “how are your eyes” question for those interested in details. Continue reading

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

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