View looking down at a black labrador guide dog and her handler standing at the top of a flight of cement stairs.

When People Say I'm 'Lucky' Because I Can Take My Service Dog Everywhere

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As a guide dog handler in college I am often told, “I wish I could bring my dog with me to class!” or “You are so lucky you get to bring your dog to college!”

I realize that when people say these things to me they are not implying “Wow, you are so lucky to have a disability that requires the use of a service dog,” but instead are just thinking about how much they love and miss their dog.

Here’s the thing, it’s not lucky and it’s not a privilege. Sometimes it just plain sucks. Sometimes I wish that I could have the same level of independence without a guide dog. You are probably thinking, “Why would you ever not want to bring your dog?” Well, let me try to explain.

Would you want to bring your dog to a doctor’s appointment, job interview, or date and be asked more questions about your dog then yourself? Do you realize that having a service dog by your side means you may struggle to obtain or maintain a job because people question your ability to perform the needed tasks of the job?

Would you want to bring your dog if it meant being judged by people you encounter? What if it meant being asked the same four questions every 20 feet while trying to get one thing from the store? What if it meant that every time you walked into a room, everyone turned and stared at the girl and her dog? What if strangers regularly asked you “Why do you need that dog?” or said things like “You don’t look disabled,” after you answered their question?

Always having a dog by your side means you are sometimes the spectacle, the uncommon sight in Target that makes people screen in excitement from many aisles away. Or sometimes people say how “sorry” they feel for you.

How about not being taken seriously by some people because you have a disability? What if always having your dog meant wondering if you will be denied access each time you enter a business?

What many people don’t realize is that with a guide dog, there is no way to hide my disability. There is no waiting to self-disclose at a job interview or on a date. It means many times people ask your dog’s name and not yours. If you don’t allow people to interact with your dog in public, as many handlers don’t for safety reasons, it means having to tell small children that “No, sorry you can’t pet the super cute dog.”

You also probably don’t realize that we need to have that dog by our side. We have to take our dog with us everywhere because that’s the only way we can do certain things. We need our dog to alert us to sounds we cannot hear, guide us around obstacles we cannot see, alert us to seizures, low blood sugar, or a panic attack we have little control over, be a brace for us if we have fallen, and so much more. Our dog is not simply with us for fun.

So, until you have a disability that permits you to have your highly trained service dog accompany you everywhere you go, please don’t tell me how much you wish you could have your dog or how jealous you are of me. You want to bring your dog in public without the inconveniences, fears, and complexities that go along with having a disability, but that’s just not how it works.

Always having a dog by my side has also given me countless opportunities to educate the public on service dogs, blindness, and living with a disability. Although being a guide dog handler can be frustrating at times, I’d still never choose to go back to using a cane at this point in my life. There are so many more things I am able to do with a guide dog that I was not able to without one. I am more confident and hold my head higher knowing that my dog is by my side every step of the way.

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When You're Living in the 'Gray Area' of Blindness

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While sitting in a classroom, many students around me have no idea that I am legally blind. They may see me walk into the class and find my seat guided by a beautiful black Lab, notice the large text on my laptop screen, or even hear my text-to-speech software before I get my headphones plugged in. Other students may notice my face being a few inches from my laptop, or how I have my phone so close to my eyes, I could use my nose to select things. They may notice how I wear my sunglasses more often than not, and if I’m not, they may see my eyes wiggle back and forth.

What the don’t see is what it has taken to get me to this point — the point of blending in like any other college student who is still half-asleep during 8 A.M. lecture.

It’s complicated. I’m blind, but I can still see. I often get asked questions about my vision, and have conversations like these:

Young woman in Starbucks: “Excuse me, can I ask you a question?”

Me “Sure.”

Young woman: “I see you have a guide dog, but I also noticed you just read something on your phone. So, um… can you see?”

Me: “I’m legally blind,  so I do have some vision, yes. I was reading the online menu because I can’t see the one on the wall.”

Young woman: “Thank you for answering. I had no idea people could see and still have a guide dog.”

This is a common misconception. Many people believe that someone who identifies as blind must see nothing, but this is not the case. Most people who identify as blind are actually what we in the blindness community refer to as “partials.” This means that we do have some usable vision. Many of us within the blindness community take a much wider view when defining blindness. We consider ourselves blind if we must use alternative techniques in order to complete any activity a fully sighted person would use their vision to complete.

I live in the gray area between visually impaired, legal blindness, and blindness. According the federal definition, I am legally blind. I can see, but not enough to have useful vision in many aspects of my life.

As a child, I was “not blind enough” for certain things. I had enough vision that I was not considered legally blind under the federal definition. My vision was poor enough that I still qualified for services from the state school for the blind, but I wasn’t “blind enough” for Braille or full-time cane usage. Now, as a young adult I am “too blind” for certain things. I am too blind to: drive, read a “normal” textbook, or complete daily living skills without using non-visual techniques.

That’s OK, though. Even though I’m “too blind” to do things the “normal” way, I can still do just about anything a fully sighted person can do, I just may do it in a different way. I can cook, clean, take pictures, learn, swim, babysit, and so much more. I’m happy with the way I am and have accepted what my disability means to me.

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When I Wonder If the Next President Will Care About People Like Me

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I wish people would notice something other than my blindness, but the sunglasses, the long cane, and my eyes that are always scanning and don’t follow things make it obvious. So during this election season, while everyone else worries about who will keep LGBT rights or take them away, protect borders, and so many other things, I think about issues that may not have crossed most people’s minds. Does this candidate even consider me a person, or a person who can be whatever they want to be?

At times I am doubtful. I am not just blind, but the child of a parent who raised me on her SSI check. Mental illness runs in my family. I am trans. I am not a “good investment,” in business terms; I need training to get to the point where college is even possible, and that training costs money. And as much as I want to forget it, even with training, even if I can read a hundred words per minute with Braille, I could still end up like 70% of my fellow blind men and women in this country and be unemployed. Like my mother before me, I wait for my SSI check to come in the mail, so I can pay my bills and get the things I need — something I never wanted to do.

I want whomever is President to see me, Charlie, the blind trans man, with my family history, as someone worth giving a chance to. Worth the college education, worth the training, worth making laws so I can get access to the books I need in Braille. Worth passing laws for my protection as everything I am. If I was applying for a job under them, I want to believe my resume wouldn’t end up in the trash, simply because I am blind, or trans, or quiet, or any of the things that make me, well, me.

I worry that the next president will be too busy to worry about people like myself. I worry that they will take more money from people like me, or worse people like my mother who will never have a job due to her disability. I worry because they can affect my life, and the lives of others like me in so many ways I don’t even want to think about. Do I matter?

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To the People Who Created the #Howeyeseeit Challenge

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To the people who created the #Howeyeseeit challenge,

My name is Charlie, or Charles. I am 20 years old, a cat lover, a friend, a writer, a horse person, a transgender man and so many other things. I am also someone who is blind, and I have been since I was 18. I understand you created this challenge to help find cures for conditions that cause blindness, but the fact is in doing so you are throwing the very people you are trying to help under the bus.

You are making the sighted think blind people can’t go out to dinner, take care of their own children, walk down the street, or live a “normal” life.

Blindness isn’t something I would wish on anyone, but my options are to live as a blind person or not live at all. So I have chosen to live. I have chosen to catch buses and trains. Walk in downtown Minneapolis. Learn orientation and mobility training, which gives me the freedom to go anywhere I set my mind to.

One day I will be a father, and I will not need someone to watch over me and my children. I will not need someone checking up on me to see if I am parenting right, or to be dragged into court because your campaign made a social worker think blind parents can’t raise their own children. This didn’t stop happening 50 years ago; this happens today in our own country, and you are just feeding their fire.

There is a big difference between a person who puts on a blindfold and tries to do something, and blind people. We have had training. We have talked to those who have been blind before us. In some cases, we have been blind all our lives and know nothing different. So do yourself and us the favor and take off the blindfold. Ask us, blind people ourselves what it is like to be blind, and actually hear what we have to say. It will not make a cool hashtag, but your future and mine might be better off because of it.

Research on treatments for blindness is a worthy cause, but it could take 10, 20, or even 100 years to find a cure for even one of these conditions. Funding for my condition, cortical blindness, is very limited even though it is the most common cause of permanent visual impairment in children. Until the day they find a cure, I have a life to live. I plan on living the life I want and making every day count.

 

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A Letter to the Foundation Fighting Blindness About the #HowEyeSeeIt Campaign

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Dear Foundation Fighting Blindness,

Hello! My name is Jessica Naert. I have been a supporter of yours for several years, especially with your VisionWalk. I have co-captained several teams over the years, including “The Way Eye See The World” and “The Eye Catchers,” along with my best friend, Misty Allen. Both Misty and I have retinitis pigmentosa (RP). Misty is now totally blind. I have a little vision remaining. Retinitis pigmentosa is one of the leading causes of inherited retinal degeneration vision loss and one that your organization readily researches to find a cure and fundraises to continue this important research. I support this type of research and applaud you for the work you have done. However, after your #HowEyeSeeIt campaign, I am not so sure that I can continue to support your work. There are many ways to touch people’s heartstrings and encourage them to donate. Instilling fear of blindness into your donors or potential donors should not be one of them.

Your campaign is misguided, encouraging supporters to fundraise by showing how difficult certain tasks are under blindfold. It is conveying that blindness is something to be feared, that blind people should have low expectations for themselves, and that society should also hold low expectations for blind people. This campaign has many similarities to the ice bucket challenge to raise funds for ALS. However, that challenge did not have their supporters pretend to have ALS for the day, and the overall premise did not instill fear about the disease. You could have done other creative things to follow the influencer-to-social-followers model. Why this? If it was because you didn’t realize the dangerous impacts it would have, many of us can understand that and forgive. But instead of accepting this might be a problem, you continue to silence us.

As previously mentioned, retinitis pigmentosa is the cause of my blindness, but the fear our society has about blindness and the misconceptions surrounding blindness is the cause of most of the issues I have today. The perception that blind people need to be taken care of, that they would be a financial, physical, and/or emotional burden to hire and work with, that they are incapable of safely and effectively parenting, that they cannot be independent and contributing members to their families, communities, and a society as a whole… this is what hurts us. Several of the videos on your campaign webpage show professionals (filmmakers, chefs, football players, DJs, etc.) who put on the #HowEyeSeeIt blindfold and try and do it without sight, many times with the guidance of somebody who is actually blind. This tactic is not appropriate because the blind chef, Christine Ha, has had years of experience and skills training to get to that point, as did Jake Olson with football and Joe Mons as a filmmaker. The campaign has also encouraged more simple tasks be completed under blindfold, such as counting cash. Of course somebody who has not had to every do this before isn’t going to know how to do it, but somebody who has been blind and had to learn how to adapt might pull out their iPhone and pull up the LookTel app, which will tell them what each bill is, or pull out their money reader from the U.S. Treasury, or feel the particular way a bill is folded to know which denomination it is.

One of the most spread videos is about how blind people have trouble taking care of their children. This is so deeply painful for me. I am not a parent but plan to be in a few years. I have many friends who are blind parents and have done a fantastic job at raising such sweet, responsible, loving, intelligent, fabulous children. One of my friends once was told that she shouldn’t fight in court for child custody because the judge will just look at her blindness and assume that she’s inept. That is absolutely disgusting and I believe what your campaign is encouraging our society to believe.

Through this campaign, you are suggesting that the only “hope” those who have been blinded by retinal degenerative diseases have is to wait for a cure. This is not the case. Depending on your geographic area, there are so many wonderful resources and support services out there to help these individuals be independent, obtain and maintain competitive integrated employment, have families, etc. I was diagnosed with RP at 14. I am now 27. I am a full-time state employee (Transition Vocational Rehabilitation Counselor), helping high school students with disabilities plan for their transition out of high school and into living productive lives. I am a devoted daughter to my beautiful mother, and a sister to my amazing sister in medical school. I am a leader in many organizations. I am a disability advocate. I am a best friend to many beautiful people, a girlfriend to a fabulous guy. I am a volunteer. I am also blind. Blindness is a huge part of me, partially because I choose to let it be, but it does not define me.

There has been a lot of research done on these types of simulations. A blindfold simulation by a blind person will never be accurate. Arielle Silverman conducted blindness simulations as part of her research her in Ph.D. program at the University of Colorado. Several individuals were blindfolded, while several were not. The individuals that were blindfolded left the activity left with the perception that blind individuals are less able to hold down basic professional jobs and were less able to live independently. This simulation did absolutely no good for those with visual impairments. As Arielle has said, “Blindfolding yourself is not much like living with blindness. When people develop permanent blindness, they get used to it. Research shows that most people who develop disabilities eventually adjust. The fear, frustration and distress go away over time. It is just part of the human condition to adapt to any new circumstance. Further, when people become blind, they learn techniques and adopt tools, such as the white cane, that give them independence.” This type of simulation does not help them realize this. I will say that there are a few occasions, I believe, that disability simulations may be OK, but there is a lot of thought and planning that goes into them to make them appropriate and not harmful.

While this campaign will end (hopefully sooner rather than later) and the sensation will die down, people with vision loss and their family and friends will have to live with the harmful effects of this campaign for a very long time. Do you employ anybody on your PR/marketing team who is actually blind and actively part of the blind community? If not, I encourage you to do so. Maybe then you can find ways to fundraise for medical advances while not compromising the dignity and well-being of the population you apparently work for.

We, thousands of blind people from across the United States, look forward to hearing from you soon to have an open discussion about this issue. Until then, we will use #HowEyeSeeIt to speak against this campaign and post positive, empowering, and accurate everyday depictions of blindness, showing our independence, success (at home, at work, as active citizens in our communities). We hope we can help shine a light for you and your supporters on what blindness really looks like and how teaming up with us will further your campaign and fundraising efforts drastically.

Thank you,
Jessica Naert

A longer version of this post originally appeared on The Way Eye See The World.

Image via Thinkstock Images

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3 Tips for People Facing Vision Loss or Blindness

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Receiving a diagnosis that you are going to be low vision, legally blind, or completely blind can be devastating. You may be shocked and overwhelmed. Your mind may start racing with questions such as: How will I continue to live? Do I still have meaning and purpose? How will I adjust and adapt? Then anxiety, sadness, frustration, and anger can dominate your thoughts.

As a 9-year-old, I was diagnosed with an eye disease. Over the next ten years, I became blind. I now have light perception, but no usable vision. As a teenager who was becoming blind, I experienced the above questions and feelings. Now in my early 30s, I have had years to adjust and know that I can indeed live a full life. So what advice would I give someone who has recently received a diagnosis and is struggling to comprehend the news?

1. Know that you are in a grieving process.

When receiving the diagnosis and experiencing major vision loss, you are starting a time of grief. You are grieving the vision you once had and now no longer have. The stages of grief are often denial, anger, sadness, bargaining, and acceptance. Give yourself the space to feel each of the stages and emotions. It will not be a linear process of feeling one emotion and then moving to the next emotion. Rather, you will go back and forth between emotions. There is no set timeline you need to achieve. Just give yourself the time and space to feel each emotion. Rather than ignoring the difficult feelings, turn towards them so that your mind, body, and spirit can acknowledge the struggle.

2. Ask for help.

Please do not try to cope and adjust alone. Reach out for the psychological, physical, and spiritual help you need. Rather than acting strong and as if you have it all together, reach out for support. When you are struggling emotionally, it’s OK to get help from a professional. When you need to learn necessary skills such as adaptive technology, Braille, and orientation and mobility, seek out the services that will help you. When you are struggling spiritually, connect with your faith group. There is no shame in asking for whatever you need. You are in a major time of transition.

3. Take life one day at a time.

Thinking about the future can be absolutely overwhelming. The fear and anxiety can be paralyzing. Rather than being overwhelmed by the future, take each day at a time. Do what you can do for that day. Adjusting to blindness, learning all that you need to learn, and being confident with your “new normal” will not happen in one day. Think of the transition as a marathon, not a sprint. Pace yourself by taking one day at a time. Focusing on each day will give you the strength you need.

Receiving the difficult diagnosis of vision loss and making the transition is overwhelming and exhausting. Yes, you will have days when you are fearful and scared about the future. You will also have days of strength, hope, and empowerment. You have what you need to make the difficult adjustment. Remember that you are not alone. Never forget that you can and will live a full life!

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