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Traveling With Vision Loss & My Guide Dog Named Jewel

Beyond Sight Magazine Cover is described in the body of the post.

Editor’s Note:

Last year at the Daring To Own Your StoryTM women’s retreat I met some of the most amazing women. Through our shared experience of sight loss/blindness, the connections we made with one another were even more special. “Courage is contagious.” Courage is also unselfishly giving to enhance the lives of others. In my circle of friends, I’m surrounded by many courageous and resilient people one of whom is Marsha Bukala.

I met Marsha, and her beautiful guide dog Jewel at last year’s retreat in Park City, Utah. While Marsha credits Jewel with regaining her independence after losing her sight, make no mistake, this woman is a courageous activist. A wealth of knowledge, Marsha is constantly working on special community projects to make life better for those living with sight loss. Marsha is one of those rare gems who gives unconditionally and with Jewel by her side she is unstoppable!

Constantly on the go, Marsha enjoys many activities around leisure, volunteerism, and travel with her faithful companion Jewel. In today’s post, Marsha shares helpful travel advice for people with disabilities flying with and without guide dogs. To learn more about Marsha and Jewel’s story check out: “Guide dog leads to friendship.”

Preparing For Travel

Two years ago I went to Guide Dogs for the Blind to train with my first guide dog. Jewel and I have traveled to many places in the US since returning home on March 24, 2018. Here are some tips and tricks I have learned when traveling with her.  

  • Book Non-Stop: First, when traveling by air I try to book a nonstop flight if possible. The connection flight I took last year was a fiasco requiring an overnight stay to catch an early flight the next morning. It all worked out in the end but this reminds one to always make sure you have extra food for your guide dog.
  • Airline Accessibility Line: After booking a flight, I typically call the airline accessibility line to reserve my window seat. I have found the airlines to be quite accommodating to give us a seat with a little extra legroom if available.  
  • TSA Cares: Next, I call TSA Cares with my flight information. Guide Dogs for the Blind Travel Agency recommended this service when I flew to training and I have used the service ever since. Here is more info on this service: www.tsa.gov/videos/tsa-cares-traveling-guide-dog-0
  • Precheck: Also, I would recommend either Global Entry or TSA Precheck depending on your travel schedule. I have Global Entry which also includes TSA Precheck which speeds up getting through security. This is especially convenient at large international airports.
Jewel's image is described in the body of the post.

Facilities & Luggage

Marsha & Jewel Image is described in the body of the post.
Marsha & Jewel

Finding relief areas for our guide dogs is another area where I try to get as much information as I can before a trip. Some airports only have relief areas outside and they are typically by baggage claim areas. Other airports have indoor relief areas past the security checkpoints, however, Jewel refuses to them because of the smell of disinfectant. Here is an app I have used to locate relief areas in the airport: Working Like Dogs – Where to Go.

Depending on the length of my trip I either pack one suitcase for both of us or two individual bags. If Jewel’s items are in a separate bag it can be checked for free per the ADA regulations. However, Jewel’s bag cannot contain any of my personal items only her food, bed, toys, etc. I have found you have to go inside the airport to the counter for this fee to be waived. Some airlines are better trained in knowing this regulation and it can take a while to get them to check your bags. So I would recommend you allow for a little extra time. I typically pay for my other checked bag in advance online if that is available. This makes it easier than having to take out my state ID and a credit card.  

Also, if I am staying with family or friends on a longer trip I ship Jewel’s food to their home. That way, I only need to pack a couple of cups of food in my carry-on bag.    

Jewel’s Travel Necessities

Now for my backpack that I carry on the aircraft with me. Here is a list of items I typically carry on each flight for Jewel:

  1. Empty water bottle to fill after security
  2. High-value Treats
  3. A few bags of her food measured out in 1/2 cup bags (this makes it easier for me to track how much food she’s had that day).
  4. Nylabone
  5. Half of a yoga mat cut into two pieces (I put this on the floor space at my seat)
  6. Mat to put on top of the yoga mats (this is for Jewel’s comfort and familiarity as I use it at the gym and other places we go)
  7. Collapsible bowl 
  8. Poop bags

I limit Jewel’s food and water intake either the night before a flight if it is the next morning or the morning of the flight. It also depends on the length of the flight how much I cut back on her food. In addition, I try to take her on a long walk either the day before or the morning of a flight. The pre-flight exercise makes her settle in her floor space on the aircraft a lot easier and she’s become such a good traveler. Initially, she would not settle down until after take-off and again during landing, she was unsettled. Now she sometimes does not even want to get up once we land! However, a piece of kibble will get her moving! 

Arriving At The Airport

Once I get to the airport the TSA Cares agent helps me get through security. Since I typically always travel by myself, I ask them to also help me get to my gate. Along the way, I’ll ask the agent where I can fill up my water bottle, or if there’s a family bathroom. In my experience, TSA Cares have been very helpful every time. You can ask them if they have a comment card to complete on the service they provided. If they do not carry the form they will sometimes come back with one for you to complete. I typically have them read the questions and fill them out for me.

Once at the gate I find a seat as close to the gate agent as possible. I do this for a couple of reasons.

  • First, if there are any gate changes announced I cannot always hear the announcement clearly and I cannot read the monitors. So I can just ask the agent.
  • Also, I like to ask the agent if there are any other animals that will be on the flight. This brings up another concern of mine I will mention in closing.  
Jewel image is described in the body of the post.
Jewel

Boarding The Flight

I do early boarding and ask the flight attendant to give me a quick safety briefing before the main boarding starts. This also gives me time to get Jewel’s space set up and remove her harness handle so she is only wearing the leather vest. Then I put the handle and my backpack in the overhead compartment. Once we land I’ll ask one of the passengers in my row if they would get it down for me. I always sit in a window seat as I feel this is the safest place for us to be. 

When flying into an unfamiliar airport, I’ll ask the passenger sitting next to me if they are going to baggage claim. If so, I ask if I can follow them to pick up my checked bag. In a familiar airport, especially Orlando, Jewel can get me to baggage claim no matter which terminal we are in. I find this so incredibly amazing how she can remember such things along with where our hotel room is or a house we are staying at after going on a walk!  

Air Carrier Access Act

It takes extensive preparations to make air travel a positive experience for myself, Jewel, passengers, airport/airline staff. With this in mind, I’m concerned with proposed changes by the U.S. DOT (department of transportation) to the Air Carrier Access Act. The changes are an attempt to curtail people from bringing fake service dogs and emotional support animals on aircraft. However, in my opinion, the recommendations will not solve this problem.   

The proposed changes will add an undue burden to people with disabilities versus those who are traveling with illegitimate pets! I encourage guide dog handlers, their family and friends to voice their opinions. Comments need to be submitted by April 6, 2020. Here is a link to the proposed changes: transportation.gov/sites/dot.gov/files/2020-02/Service%20Animals%20-%20NPRM.pdf. Also for those with Guide Dogs please check with your school on how they are responding to this change. Guide Dogs for the Blind sent all handlers a survey so we could incorporate our concerns in their response. They will be sharing it with us in the near future. Also, The Seeing Eye published their response on their website. www.federalregister.gov/documents/2020/02/05/2020-01546/traveling-by-air-with-service-animals

I do hope for safe travels for all especially during this time of uncertainty with the virus outbreak.

Image Descriptions:

  • Header: The Beyond Sight Magazine cover has a gray/white marbled background. The date & edition numbers are in the upper right corner in black ink. Marsha’s photo is aligned on the right margin with the background appearing on the top, bottom and left margin. Marsha is smiling and sitting next to Jewel with her left arm wrapped around her. Jewel is a gorgeous yellow lab with dark-rimmed eyes and an expressive face that always looks like she’s smiling. Marsha, wearing a hot pink tee, has shoulder-length blonde hair and has on eyeglasses. Both are on the patio with greenery in the background.
  • Solo photo of Jewel with her signature smile, facing the camera laying in front of the greenery.
  • Another photo of Marsha and Jewel posed similar to the header image, in an open area of the patio. In this picture, Jewel looks like she has something on her mind.
  • Close-up of Jewel’s face with a serious expression.
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Finding Strength In Self-Acceptance

“She’s standing on the corner, cane in hand, waiting to cross, and she looks like she knows where she’s going. She’s approachable and aware. She accepts people the way she has accepted herself, fully. There is a lightness in her footsteps because she doesn’t take herself too seriously. She sees life as an adventure and not an emergency.” ~Joy Thomas, Double Vision Blog

To learn more about Joy’s journey to self-acceptance check out her Woman on the Move article.

Image: Joy Thomas and Roja (her guide dog) are crossing a busy city street.

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The Guide Dog Memos: Megan

Megan The Stunning Black Labrador

Image description is in the body of the blog post.
Megan, black labrador Guide Dog | Guide Dogs for the Blind | Handler, Nicole Schultz-Kass

Happy Friday!

What better way to usher in a Friday than to share with you the beautifully stylish guide dog, Megan. Here she is styling her lovely pink raincoat.

Megan dahlin, you look mahvalous!

“Being a Guide Dog was both my destiny and my choice. It’s a little like coming from a family of doctors and finding that medicine is both my passion and my family’s legacy. Being a Guide Dog and working with my handler means a lifetime of adventure and love! Together, we travel the world, work hard, play harder, and we live life to the fullest with our family, friends, and community.” ~Megan, black labrador Guide Dog | Guide Dogs for the Blind | Handler, Nicole Schultz-Kass

Image Description: Text is above the 3-Panel photo collage. The middle photo is a black and white of Megan in harness with a black background–her coat is shiny so her features are very distinguished and she looks statuesque. The next two photos are Megan in harness with her pink raincoat on and my purple raincoat and black Converse shoes visible against a white background.

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WOTM 30 Featuring Joy Thomas

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

Thomas03142016-31
Photo Credit: Morry Angell, Guide Dogs for the Blind

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?”

My supervising teacher hesitated

“Well, um, he did mention that you didn’t maintain strong eye contact throughout the entire interview. He said your eyes didn’t always follow where he was pointing when he was explaining the school set up. He said your eyes kind of trailed off, and it made him skeptical about you.”

Her words came as a swift, unexpected punch in the gut

Photo Credit: Morry Angell, Guide Dogs for the Blind

That was 13 years ago, and I cringe thinking about the conversation, but not because I am embarrassed about my eyes like I was then. I cringe now because I remember how much time and energy I wasted trying to hide my vision loss.

The principal had no idea that I literally couldn’t see his finger when he moved it even a half inch to either side, much less follow the sweeping motion of his hands. My supervising teacher knew about my loss of peripheral vision and even that I was legally blind, but I had asked her not to say anything because I didn’t want it to keep me from getting hired. I didn’t use a cane in my interviews, or really much at all at that point in my life because I didn’t want to look “blind”.

Fortunately, my supervising teacher did not listen to me when I went to my next interview, choosing instead to mention my vision loss as one of my strengths, stating how hard I worked and how well I communicated with the students to compensate for my vision loss.

 

That principal hired me

Joy Thomas-7
Photo Credit: Morry Angell, Guide Dogs for the Blind

I held my own as a middle school English teacher for several years, but I continued to struggle much more than I needed to because I still spent a great deal of time and energy trying to do everything the “sighted” way. I still felt very ashamed of my vision loss, and I think that came across to my students and colleagues. I always felt that I was just one incident away from disaster. I had several incidents where parents thought I had purposely ignored them in passing, and one even complained to the school dean about it. These incidents unnerved me and made me feel like people were getting closer and closer to finding out the truth about me. The truth that, because of my eyesight, I was incompetent.

When a 7th grader with special needs fell asleep while I was reading a book to the class, and I failed to notice him sleeping outside of my line of vision, the special education teacher’s aide reported this to her, and she stormed into my classroom and demanded an explanation. I spoke with her privately about my vision, and she was irate and said that she couldn’t trust her students with special needs in my classroom. I became terrified that she would “tell on” me to administration, and since the principal who hired me was no longer there, I wasn’t quite sure if the new principal even knew that I was visually impaired and how he would feel about it. Since I was still one year away from earning tenure, I knew that the school could legally lay met off at any time, without giving any reason, so I would never even have a case if anyone discriminated.

So, despite my outstanding observation reviews and the fact that I was a creative, organized teacher and had spent 2 years and a small fortune getting my master’s degree, I chose to resign from my job because of fear and shame. I figured that if I were the one who quit, there would be no chance of me ever being fired.

I was consumed with blending in and not appearing weak, which took away all of my strength

Thankfully, I’ve come a long way over the past 9 years since I left my teaching job. I now get around very well with the help of a guide dog. I have also acquired technology and housekeeping skills to make everyday life more accessible.

Ironically, now when I use my guide dog, people continue to make comments about my eye contact, except the exact opposite opinion from that first principal. “But you don’t LOOK blind. You’re looking right at me and making eye contact!”

That’s the tricky thing about degenerative eye conditions like Retinitis Pigmentosa (RP). Whether you’re using a mobility tool or not, people are constantly asserting that you have “not enough” or “too much” vision. It’s like visual purgatory.

When you linger between the worlds of sight and complete darkness long enough, a few things become apparent.

  1. There are certain tools available, such as canes and dogs and magnifiers and smartphones, that can be helpful and do not have to define you.
  2. The general public has a very black and white view of blindness, and when we’re out in the world, living our lives with whatever tools help us, we are often educating people about the wide spectrum of sight loss.
  3. Sharing stories of vision loss helps connect us and changes stigmas about blindness.

Photo Credit: Morry Angell, Guide Dogs for the Blind

I’d like to say that shame over vision loss is something that you just wake up having conquered one day, but the truth is that it’s a million little baby steps. And on certain days, it still takes work.

I cannot pinpoint one breaking moment or even one particular thing that helped me move forward. It was a series of breaking moments and a series of steps forward. Part of it was having my daughters and wanting them to grow up with a happy mommy; part of it was sharing stories with my twin on our blog; part of it was getting a guide dog.

It was only when I began to lean into that part of myself that I always thought of as flawed that it truly began to lose power over me.

I may not be teaching in a classroom right now, but I am now confident enough that I could go back at any point in the future, For now, I am homeschooling my 2 daughters, who are growing up with a mom who doesn’t let the stigma of blindness stand in her way.

And they don’t seem to care whether I make too much eye contact, or not enough. I hear them tell their friends their mom is “half blind”, and I suppose that is half true.  I am not concerned with correcting them or having the most accurate label to describe me and my vision. My only concern now is living the most authentic life possible and spreading the message that we do not need to be ashamed of blindness.

You can connect with Joy and her twin Jenelle on their social media accounts: