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For some people with significant vision impairments, especially those who were born legally or totally blind, their limited sight may not feel like a disability. Instead, they may simply view it as just another physical trait – one that is naturally addressed in their daily development growing up along with race, gender, body stature, and other characteristics. However, for others such as myself who lost sight as an adult, the lack of eyesight oftentimes represents a traumatic divergence in one’s entire way of life.

In my case, I was diagnosed with retinitis pigmentosa (RP) at 30 years old. I spent the next couple of years viewing my degenerating visual clarity and inevitable blindness as a looming dark shadow on my future aspirations. As the rods and cones in my eyes eroded, so did my
hopes and dreams for a normal, happy life in my career and with my family. Even simple mundane activities such as watching TV became frustratingly impossible to attempt without extreme anxiety. Would I be able to clearly follow along? Would I catch on to the comedic sight gags? Would my family notice if I didn’t? Would anyone be annoyed if I asked them yet again to put something on for me? These were the kind of questions I constantly thought about each time I wanted to tune in to any show.

The TV series “Fringe” started airing in September 2008. I vividly remember this not only because of the show’s innovative storylines and concepts, but also because it was at the beginning of my medical mystery. I was diagnosed with RP earlier that year. So while
scientific phenomena were being explored in this intriguing new fascination of
mine, I was starting my own journey down a path of scientific wonderment. With the advice of my doctors, I decided to try a variety of regiments with several different medications in attempt to slow down, or possibly even stop, the degeneration of my eyesight. Just as the “Fringe” scientists and agents, such as the main character Peter Bishop, were on a mission to save the world, I was on a mission to save my vision.

Unfortunately, none of the injections, pills, or examinations I subjected myself to resulted in any Peter Bishop-esque miracle. In fact, the only thing the experiments seemed to effectively do was leave me with a sense of brokenness and distract me from my potential rehabilitation. As the rods and cones in my eyes deteriorated, weakening my eyesight, it became more and more difficult for me to watch and enjoy “Fringe.” Without being able to see some of its complicated action sequences and unspoken surprise reveals, I was unable to fully comprehend what was happening as the story developed. “Fringe” went from being my go-to choice for personal chill time to an immediate trigger for tears and anguish. It bothered me that I couldn’t watch it on my own, and it became the ultimate reminder of my emotional spiral toward dependence in virtually all aspects of my life. I hated not having control over my own entertainment desires, but after completing only two of the five seasons, I stopped watching. Still, shame and heartache lingered in my subconscious.

So why am I writing about this now, especially when the show itself ended after its fifth season in 2013? Three years after my initial diagnosis, I finally discovered disability services and vocational rehabilitation. This time, my program’s focus was not on fixing me, but accepting my life in the world of blindness. In a sense, this became my alternate universe, just as Peter Bishop had to come to terms with his existence. I set out on a mission to reevaluate who I was and how I fit into my surroundings. Eventually I found my home not far from where I started, but with a new perspective.

I spent several years learning adaptive forms and methods of tackling daily and professional tasks. I worked hard every day on improving my technical efficiency, embracing my voice for self-advocacy, and building my confidence in comfortably expressing my true interests or goals. Basically, I rediscovered me.

Empowered by my newfound knowledge, skills, and technology, in 2016 I realized I was at last ready to go back and finish the show that for years had plagued my mind as a symbolic marker of the beginning of my lost pleasures. In the course of my training, I was introduced to the amazing concept of audio description as well as text-to-speech screen reader software
programs. Fully equipped with the proper equipment and means of accessing the audio-described version of the “Fringe” series, I was finally able to finish this TV show favorite and completely enjoy it.

I always had the ability to do whatever I set my mind to do; I just needed the right combination of services, tools, and support to help me tap into my own potential. Independently using my computer, navigating the necessary steps to access the form of entertainment I choose, and confidently deciding to relax after fulfilling all my other work and personal responsibilities represents a culmination of all my previous years’ labors merging to create one individual living the life she wants. It demonstrates my rekindled flame of self-determination.

Choosing to watch “Fringe” shows how my refueled and bottomless tank of endurance allows me to face dark fears and bitter challenges. It tells of my resilience, strength, work ethic, and
ableness. In short, watching “Fringe” signifies I am a success!

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Mandy Ree is a writer, disability activist and is legally blind.

Being blind is often not fun. There are challenges and setbacks, disappointments and discouraging moments. But that’s all they are – setbacks. For the most part they are surmountable. In the year that I’ve been blind, I’m continually discovering many new joys of life that I had never noticed before, previously hidden by my vision.

While riding a Milwaukee to Chicago Amtrak for a holiday luncheon, I experienced the rich soundscape comprised of the train horn wistfully blowing as we sped through the small rural towns, the unmistakable ringing of the crossing bells, the murmur of quiet conversations around me, the conductor announcing the stops and the gentle rocking of the cars navigating the rails – that together gave me a strong sense of orientation, making me forget I was even blind. I don’t think that I had ever paid attention to these rich and colorful sensibilities before I had lost my vision. It was my first train trip since I lost my vision, and perhaps a bit ambitious, but I did it. On my own, keenly focused on my other senses, guided by my white cane and electronic navigating tools, all giving me a stronger sense of confidence and independence.

The luncheon went well, but on the return trip I got a bit disoriented in Chicago’s Union Station, causing me to miss my train. I was eventually led to the proper but crowded area, now waiting for a train not expected for another 90 minutes. With a visible disability such as blindness, reinforced by being dragged around by train station personnel, I felt embarrassingly marked as a disabled person and generally shunned. I stood alone while feeling the glances of people around me who seemed to be working hard to be invisible – even though you know they’re there, it seems like they hope someone else will step up and interact with you – as if blindness would be contagious if they got too close.

Then a miracle occurred when I was spotted by another woman, who kindly got up and offered me her seat. I thanked her, but said I could stand and wait for the train. But just then, a seat opened up next to her and I happily seated myself. She offered me some of her coffee on that frigid Chicago night, which I immediately accepted, not only because I really wanted a sip, but to acknowledge her kindness.

Her name is Peggy Anne. We talked until the train came. It turned out that her mother had been blind, thus she knew how to help a blind person without making them feel helpless or pitiful — I am not either. She asked me if I needed assistance, rather than just pulling my arms as many do. She treated me with dignity and respect and did not dwell on my blindness. We quickly became friends as we discussed a myriad of topics and solved many global issues together. We realized we had a lot in common – from life tragedies to blessings, a common spiritual perspective and a mutual ability to overcome life’s obstacles.

I also have a broken ankle and am not able to walk, certainly not all the way up the platform to the “disability” car in front. So I had arranged for a Red Cap, a needed service for us broken-boned blind folks. When the train arrived and started boarding, I waited patiently for the Red Cap, to no avail. Fortunately, my new friend ran out to the conductor to determine what had happened, only to find they had forgotten about the disabled person and said the train had to leave regardless. But due to her determination, she was able to flag down another Red Cap and he quickly got me onto the transport. I was also able to convince him that Peggy Anne was my “seeing-eye friend,” so he got us both onto the train just in time, where we sat together and continued to solve world problems and deepen our friendship.

True friendships are rare. Finding a friend whom you can celebrate all of their being is uncommon. If I was not blind and able to walk, I never would have met Peggy Anne – an amazing person full of kindness and joy, in a season heralded to be all about those kinds of values. I can now better understand what Helen Keller meant when she said, “Walking with a friend in the dark is better than walking alone in the light.” Thank you Peggy Anne for being my friend. You have enlightened my world during this time of lights and bells, cookies and songs and peace on earth.

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When you’re working with a guide dog, you will encounter many different kinds of people. While most of these individuals have the purest of intentions, few of them realize how their actions can pose a serious safety hazard for both you and your canine partner. Here are eight potentially hazardous types of people I’ve frequently encountered as a guide dog owner.

1. The Kissing Bandits.

You’ll never actually see these people, and not because you’re blind or visually impaired. These sneaky characters like to lurk amidst the shadows. The only indication of their presence comes in the form of the annoying kissing, smooching and other face-sucking sounds they make in a persistent effort to get your guide dog’s attention. A “Kissing Bandit’s” misguided display of affection is dangerously distracting for both you and your guide dog! Trust me, my dog does not want to kiss you. I don’t want to kiss you! Neither she or I have any idea exactly where your mouth has been. Please go home and smooch your own pooch and let us get back to work.

2. Nostalgics.

Prepare yourself for story hour! Seeing your beautiful guide dog will undoubtedly cause some lovers of your breed to take a stroll down memory lane. “Nostalgics” will stop you dead in your tracks enthusiastically wanting to share stories about their dearly departed “Buddy” or “Lassie” or “Spot.” They will spare no small detail from the time they first laid eyes on their canine companions to every gut wrenching moment leading up to their passing. As someone who has owned and lost many dogs prior to being matched with Frances, I feel for these people, really I do. But when you’ve got a toddler crossing their legs in desperate need of the potty, you’ll need to gently cut these conversations off and keep it moving.

3. Ninjas.

They may not be dressed in black, but “Ninjas” definitely know to sneak up on a blind person. You won’t “see” them coming. Chances are you won’t even hear them coming. They will ignore any “do not pet” markers on your guide dog. They won’t care they are in harness. These people believe they are above asking permission when it comes to touching your dog.  What “Ninjas” want most in the world is to lay their hands on those furry faces or kiss you working dog’s wet nose. The best way to combat a ninja is by giving them a dose of their own medicine. Once bent over or on their knees talking to your dog, grab your harness and maneuver around this perpetrator. “Sorry, my dog is working, got to go!” Evaporate into the night and never look back.

4. The HR’s.

Do guide dogs get sick days? How about vacation time? “HR’s” (short for Human Resources) are overly concerned with labor laws relating to your canine’s work responsibilities. These people will inundate you with questions, sometimes deferring right to your dog for a response. (FYI, Frances won’t answer.) “Are you getting enough rest?” “Is momma’s route too stressful?” “Do you need a spa day at the groomers?” “HR’s” are relentless and won’t give up until you’ve convinced them your guide dog is well-fed, loved and respected as your partner. When I come in contact with an HR, I quickly whip out my cellphone. My screen saver happens to be a picture of Frances in a tiara; proving once and for all that my dog is absolutely treated like royalty when she’s off duty.

5. Smartphone Zombies.

Get off your cell phones, people! While guide dogs are trained to help the blind avoid obstacles on the street, nothing is more unpredictable than a bobbing and weaving “Smartphone Zombie.” Zombies like to walk face down, noses pointed towards their smart phone screens. They rarely look up at the world around them, preferring texting and emoijis to human contact.

One memorable smartphone zombie incident occurred on a cold, December night as my guide dog Frances and I were en route to my local hospital for a doctor’s appointment. As Franny lead me towards the front door of the building, she stopped midway, indicating something was in our path. I extended my hand to find she was alerting me to a wheelchair that had been left outside. That’s when it hit me. Literally. A woman walking with her cell-phone crashed right into me. The phone falling into my coat, right down my cleavage. Yeah, how’s that for awkward.

“You didn’t see me coming?” she snarled.

“No, I didn’t see you; I’m blind.” In my head I was thinking…. Umm. Hello? Woman with a guide dog here.

There was no “I’m sorry,” or “Are you OK?” All the young woman said was, “Well, give me back my cell phone.” I removed my glove and fished out her phone from inside my jacket. She grabbed it from my hand as if nothing had happened, and went right back to texting. I looked down at Frances and shook my head.

Despite your dog’s years of training, be prepared to walk into a couple of these hazardous individuals during your partnership. Don’t worry about apologizing for the mishap. Zombies will usually ignore you and your dog entirely and continue focusing on their digital world. Take a page from their book and blog, tweet or Facebook about their deplorable behavior later! (How do you like me now, hospital parking lot Smartphone Zombie lady?)

6. Interrogators.

You’re walking with your guide dog when your cell phone rings. You remove your phone from your coat pocket and take the call. That’s when the interrogator appears. “Excuse me, did I just see you answer your phone?”  Yes, yes you did. “But how can you do that if you’re ‘supposed’ to be blind?” If you’re feeling patient that day, feel free to subject yourself to a lengthy discussion with this “Interrogator”about variations in visual acuity and accessibility features on smart phones. Some will appreciate your candor and may even become more educated as a result of your efforts. But prepare yourself! Other “Interrogators” will continue to question the validity of your disability and why you need a guide dog in the first place. Excuse yourself from these conversations. Take the high road, stay classy and remember there are some folks out there who choose to make it their job to interrogate the world.

7. The Flea Circus.

When groups of small children see me working with Frances, they usually begin to bounce up and down. Enter the “Flee Circus.” Kids have two reactions to dogs. They either love them, anxiously trying to pet them, or they are completely petrified, running away in sheer terror. As a blind mom of two toddlers, I know kids can be difficult to manage. They will absolutely test your patience with their overabundance of tenacity and curiosity. However, it’s up to a child’s parents to teach them proper dog etiquette, and I’m not just talking about guide dogs.

No child should be permitted to run up and touch a dog they don’t know. Every dog is different and not all of them can be trusted to tolerate children. As a guide dog handler, I know my dog has been trained to work around kids. That does not negate the fact that I don’t want my dog touched when we are working together, especially when I am trying to manage my own two daughters in public.

8. Puppy Play-daters.

Let me set the scene. You’re about to cross an extremely busy intersection. You and your dog are in sync, intently focused on the sounds and flow of traffic. All of sudden you hear yappy barking headed in your direction. Enter the “Puppy play-dater.” “Oh, hey. Can you see me? This is my dog Precious, she just wants to say hi to your dog.” “Precious” has now snapped to the end of her leash, dragging her overzealous owner behind.

“Can you please hold your dog back?”  I ask.

Badly offended, the owner continues to babble, “No, no really, she’s just playful.”

“Puppy play-daters” fail to realize the immense importance of a guide dog’s health and safety. The blind rely on our canine partners to get us where we need to be on a daily basis. If Frances gets hurt, my entire family suffers. Please control your “precious” dog and pretend my canine partner and I aren’t even here. If we’re in the mood to play, we’ll head to the dog park!

Being a guide dog handler is a delicate balance requiring an immense amount of concentration by both handler and dog. Working with Frances has made me extremely mindful of her safety and my own.While I’m always open to educating others about Franny and my work together, there are times when people’s interactions with us can potentially put my family in danger. Don’t become that hazardous individual for a guide dog team. Respect the working relationship and remember your actions, however well-intentioned, could inadvertently cause us harm.  And please, if you’re walking, stay off the cell phones!

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Last year, my friend took me to Universal Orlando to go check out the Christmas events they offered. As a Disney cast member who had unlimited admission to the Disney parks, I never really had the money or the desire to wander into what we jokingly referred to as “The Park That Shall Not Be Named.”

As we were wandering the park, a random person in a green jumpsuit approached us and asked if we wanted to carry a Macy’s balloon in the park’s parade that day. Apparently, every year, Macy’s sends down their balloons and floats from the Thanksgiving parade direct from New York City to us in Orlando.

As a kid, I was obsessed with the parade, and even more so with the balloons. Balloons to me meant hope. Something that big should not be “flying,” and to me, that defied all childhood logic. If something people don’t believe in can rise above and fly, then a kid who was always bullied due to physical and emotional disabilities can too, right?

Mandy with a balloon.
Mandy with a Macy’s balloon.

That day, as I was dealing with the holiday blues that come with depression, I felt free from all the pain. Although I have ocular albinism that limits my ability to see, I was able to obey my pilot’s commands and hand signals. Like the balloon that day, I flew along with it. I promised myself I would be back again one day, little did I know I would get a job from it.

Back in August, I lost my job at Disney. My depression hit hard and every interview I went on cringed when they saw I was disabled. I spent three and a half months trying to prove potential employers wrong about me. And then I came across a posting for a Balloon Handler. Although it was a seasonal gig, it holds the potential of moving forward into something else. A second chance at working again.

As I went into the interview and got the fair share of cringing upon them learning of my disability, a miracle happened.

I was hired by Universal to be part of the parade I was in as a guest the year prior.

For the first time in what seemed like forever, I found a company that valued me as a human being and not someone with a diagnosis. They gave me the opportunity for the next month to live my 5-year-old self’s dream.

Like the balloons that fly above my head everyday I step off in the parade, I am free. Free of discrimination, free of stress, free of the “You can’t” or “You’re not good enough” attitudes. Free of worrying how I will survive this tough time of year.

Each day, I go out there with all the stress left outside the gate and give it my all. And like the person who found me and my friend that day last year, I can only hope I can bring the same amount of happiness and wish granting they did for me.

Like a Macy’s Parade balloon, hope floats.

Follow this journey on Legally Blind Bagged.

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Over the past year, I have had the honor of connecting with many new parents of low vision and blind children. Across all of the different conversations I’ve had, some very common themes eventually arise in our discussions. Many of these parents, until the birth of their child, had never met a blind person, so they often feel in the dark in terms of how to move forward.

I want to share 7 insights I wish all parents of blind kids had. I hope these will be useful to readers.

Before we jump in, allow me to share a little bit of my own background with blindness. I was born with bilateral congenital cataracts and developed nystagmus, strabismus, and bilateral amblyopia. My current vision is 20/400. Or to put it more simply, I’m legally blind. I currently run a busy coaching and training company in New York City.

So let’s jump into those 7 issues.

1. Tough emotions.

Having a child is one of the happiest moments in a parent’s life, and yet when ocular conditions are discovered, that joy may be tinged with fear, sadness, anger, and the belief that “it must be my fault.” These emotions are completely normal. Don’t run away from them, and don’t let others tell you how you should feel.

However, if there are moments when those emotions are stealing your happiness, or they are taking away from time with your child and you would like to feel differently, there are some things you can do. The first is to realize that negative thoughts can generate even more negative emotions. It becomes a cycle of feel bad, think negatively, feel worse, have more thoughts, etc. Here is a simple technique to bring you back into the present moment, which can help you to feel a lot better. Bring your attention to your body, specifically the edges of your body. Allow your awareness to rest in the outline of your body, noticing where your body stops and the rest of the world starts, or where the rest of the world meets you. When you have a sense of that, shift your attention to your breathing and allow it to become comfortable and steady. Next think to yourself, “I’m present in the now.”

At first you might be tempted to engage in those thoughts again. Be patient with yourself, know the thoughts are not reality, and bring your attention back to your body. Take your time with this and practice it often. The more you practice, the more automatic it will become for you.

Take some time for yourself as well. Parenting can be overwhelming, let alone having to add on any medical necessities such as contacts, glasses, or eye drops. Schedule some time to relax and look after your well-being.

Finally, know that it is not your fault!

2. Fears for the future. Will my child have a normal life?

This is by far the most pressing issue about which parents are concerned, and understandably so, especially if you haven’t had much interaction with the blind community. But I always feel a twinge of sorrow when asked this. The sorrow is twofold — I can only imagine the concern parents have for their blind children, and it also highlights the problematic beliefs sighted people hold about being blind. I’ve never once considered my life abnormal, but I suppose in the eyes of someone who can drive everywhere and see the television from their sofa, the life of someone with low vision or blindness might, on the surface, seem abnormal.

If your child was born with or acquired low vision early in his or her life, their way of experiencing the world is perfectly normal to them. We don’t walk around thinking about how abnormal our experiences and lives are, because we do not know any other way of being.

Allow me to reassure you that the answer to your question is “yes.” Your child can have as normal or as extraordinary of a life as they want. Your child can excel in school, participate in extracurricular activities, live independently, have friendships, romance and a family, work, and achieve her or his dreams.

I would encourage you as parents to not settle for “normal” for your children. Society has a very limited view of what “normal” means for the blind, and it is usually wrapped up in either being Stevie Wonder, or more often, being completely incapable of doing well in school or living independently. Hold your blind children to high standards to help them succeed.

3. My child’s sight doesn’t seem that limited.

This one is specifically for parents of low vision children as opposed to completely blind kids. Vision loss is not predictable or always stable. Many of us experience visual fluctuations throughout the day or over a period of days. There are times when we can see better than expected, and other times we see a lot worse. This does not mean, however, that they have more vision than what the diagnosis suggests.

4. Accepting blindness.

It can be tough to accept that your child may not be able to do everything sighted kids do. There may be a temptation to downplay the sight loss or to hide it, out of denial or a sense of embarrassment due to the stigma of blindness. Please don’t do this. Your child needs exactly the opposite of denial and embarrassment.

Children learn their emotions and begin to build their self-image through the example set by their parents. If you reject that part of your child’s experience, they may reject that part of their identity. Some may even be tempted to hide their vision loss. This can set them up for a lot of hardship. Imagine a young adult who has hidden their low vision from their employer. They make a mistake on the job because of their vision, and they are subsequently dismissed for no other reason than they could not see and no one knew.

By accepting that your child has low vision/blindness, you are validating their experience of the world, and you are teaching them to love all of what makes them who they are.

5. Worrying about cane training.

The white cane can be a scary picture for parents, as it is both a public statement about disability as well as an indicator that the child really cannot see. Because, of this there can be reservations about signing off on cane training.

Please keep in mind that cane training is not given to all low vision children. It is based on an evaluation from your child’s mobility trainer and/or is in response to a strong possibility of further vision loss in the future. If training is suggested, it is because specialists believe that it will give your child greater independence and safety.

Some parents may worry about a social stigma around the cane, or that it will make travel more dangerous for their children. In terms of stigma, parents are absolutely right. It exists, and blind people can face some pretty big hurdles in terms of discrimination. However, that will happen with or without the cane. It’s is a fact of life. In my experience, however, carrying the cane tends to reveal the best in people. Strangers tend to be kinder, more helpful, and I get to speak with a lot more people than I used to before I took up the cane full time.

Canes make traveling a lot safer. They make it possible for us to see so we aren’t tripping over people or falling down steps. When my vision was better, I never used a cane, and the consequences were a broken foot, a chipped kneecap, and more bruises from falls than I can count. The white cane (and guide dogs) make travel much safer and encourage sighted people to be more helpful.

The temptation to refuse cane training is often at its core more about parents being self- conscious than it is about the child. Cane training gives your child a lifelong skill. It doesn’t mean they have to always use the cane, or even ever use it again after training — but it does give them the choice. Canes are not about fashion, they are a tool for independence and they can be lifesaving.

If you or your child happens to be fashion-conscious, there are some great fully customizable canes available through Ambutech and other companies. My suggestion is to stick with a white cane and only color accents, as white is more recognizable.

6. Learning advocacy.

At some point in your child’s life, most likely in regards to school, you are going to need to be your child’s best advocate. The state might not provide the right amount of support via qualified vision teachers and mobility instructors, the school or teachers might not allow for much needed accommodations, or something else entirely. In those moments, you’ll need to stand up for your child. Your child is protected both under the ADA and IDEA (Americans With Disabilities Act and the Individuals With Disabilities Education Act). Know your rights and don’t be afraid to advocate for your little one.

Of course advocacy doesn’t just mean standing up with things go wrong. There may be opportunities for you to help educate your young child’s classmates about their condition. This can help to create a more inclusive classroom environment and help your child to more easily build strong friendships.

7. Building connections with the blind community.

One of the best things my mother did for me was to enroll me in every blind children’s group in town. I split my summers between sleep-away camps and day camps specifically for blind and low vision children. The rest of the year we had a smattering of social outings, events, and activities. Looking back, these are some of my happiest childhood memories and also some of the most important. For those of us who do not go to schools for blind children, we spend our childhoods trying to fit into a sighted world where none of our school friends are like us. Joining groups and camps gives children the opportunity to make friends with other kids who are just like them, kids who know what it’s like to be dragged to countless ophthalmology visits; who know the struggles of learning Braille; who share in the same difficulties and accomplishments only familiar to the blind community.

These types of groups also facilitate sports and activities that are often not accessible in other areas of blind kids’ lives. These camps give children experiences camps for sighted kids and even schools cannot.

Taking part in these groups doesn’t mean your child is being limited to only blind groups or can’t join clubs or activities at school. It means they get to grow up knowing that they aren’t alone, and there are lots of kids out there just like them. It will link them into a community that they can choose to take part in or not for the rest of their life.

Finally, if you are a new parent of a low vision or blind child, please know that it does get easier. Your little one will grow up to be an amazing person. Your and their path is going to be unique, and you will grow together. Remember to be strong, and know that you have an awesome child who will have an incredible adventure in life.

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