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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Why I Wish Society Would Stop 'Hiding Under a Blanket' About Disability

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Dear Society,

There are a few things I wish you would understand about my life as a person who is blind.

People who are blind do not need to be spoon fed, unless they’re still toddlers. A spoonful of sugar only helps the medicine go down, it does not help someone live with blindness — so stop sugarcoating life and disabilities in general.

As someone who is blind, I am not dependent on others for daily tasks such as getting dressed, brushing my teeth, and cooking. When I listen to a book, I will proudly say that I read it, because that’s my way of reading. I am capable of going to college and getting a job. I am able to cross streets and travel on my own. I am not helpless. I do not enjoy pity. And I refuse to accept a politically correct society that revels in calling me “differently abled” instead of disabled.

If you are blind, you have a disability. To whomever came up with “differently abled,” I’m sure it was with very good intentions. I understand your line of thinking. People with disabilities cope in our own ways and adapt with different abilities, and thus are differently abled. However, I refuse to accept the soft padded room that some in my generation seem to want. I am disabled. Just because some people have chosen to view disability as a negative, that doesn’t mean I do. I am also a firm believer in person first language. To me the person comes before their disability. I am not my blindness. I am a woman named Gabriella first, and blind second.

I’m tired of living in a society that refuses to acknowledge that I have a disability, that I’m blind. Society is so careful not to ask questions, for fear of causing offense. It would be nice to one day live in a society that saw me first, and my blindness second. Unfortunately, that is not the way things are right now.

I believe fear is the reason people don’t mention my blindness, are afraid to laugh at my humorous take on it, and unsuccessfully hide their pity. I wish people would get out from under their blankets and stop hiding from the Overly Politically Correct Monster. He only bites a little, and you’ll be all the better for it.

And don’t worry, I’m also guilty of holding too tightly to the blanket.

I’m tired of living in a society that perpetuates blindness stereotypes. Just because you saw it once, that does not mean it should be generalized. For instance, a few months ago, my guide dog and I were kicked out of a bakery because I did not look like I was blind. People who are blind are all different. We don’t all carry canes, especially if we have a guide dog. We don’t all wear dark sunglasses. We don’t all use echolocation (clicking noises) to get around. We don’t wear mismatched clothing… at least not all the time. We’re not constantly running into things… only sometimes. We don’t need “helpers” to function.

I know I’m being harsh. I thought it’d feel better if I ripped the Band-Aid off fast, instead of going through a slow and painful process. It’s OK to be curious. It’s OK to encourage independence in children who are blind. It’s OK to kindly offer help to those who are blind, and to walk away if they refuse it.

I don’t think many people are ready to get rid of their blankets — I know I’m not. But I’m trying to hide beneath one that is much smaller than the one I’ve become accustomed to.

Sincerely,

Gabriella Drago, a girl who is blind

Follow this journey on Key of Can’t C.

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The Person Who Treated Me Worst Because of My Disability

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Life is a state of constant change. Even when we don’t know it, things around us in life are always changing. Circumstances, relationships, moods. Humans can be incredibly temperamental, but we’re also habitual. As a child, we’ll touch a stove twice even though it burned us the first time, and we still do it as adults. We keep toxic people in our lives, we do things that are unhealthy for our bodies, and possibly worst of all, we consistently stay in mindsets that hold us back from being happy. These kinds of behaviors can be really difficult to change, because sometimes we don’t realize that we can be our own worst enemy.

I have been treated poorly by people in my life, but two years ago I experienced the worst treatment I have ever known. The perpetrator was a person I knew better than anyone, the person I should be able to trust the most.

It was me.

Of all the times “friends” have walked all over me, partners mistreated me, and strangers have been incredibly rude to me, none of it compares to the way I treated myself. I wanted others to accept me for my disability and who I was, but I was more harsh and ignorant toward myself than any of my peers.

If I had one kind person in my life during those times, I may have never gotten to the dark place that I found myself in. I could have, and should have, been that person for myself. Instead I dissected all my mistakes and punished myself every day, mostly for things I had absolutely no control over.

I know I’m not the only person with a medical condition who has done this. But the best decision I ever made was to recognize that I’m not a mistake. I work hard — sometimes harder than most people — through disability and the depression and anxiety that come with it. Now I’m building a future for myself. I used to be ashamed to have a visual impairment. Now, I’m proud to be exactly who I am, and I love the way it feels.

In my head, I have a reverse mirror of Erised. I look into it and see all the things I used to be, and I compare it to who I have become. I’ve learned it’s important to stay humble, but don’t forget to give yourself credit for the changes you have made. Treat yourself the way you want others to treat you, and never accept less respect than you give.

Follow this journey on The Blink Butterfly.

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The Stigma My Blind Son Faces, And What I Decided to Do About It

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My son Campbell is smart, curious, personable — and blind. Despite his long list of assets, his blindness is what society sees first.

Soon after Campbell was born, I realized something was different. I found out he was blind after I noticed he wasn’t responding to visual cues. Ever since, for the past 23 years, I have been studying society’s impressions of him. Even when he was a baby, people wouldn’t know how to act around him — that reaction has only become more pronounced over the years.

When Campbell was only 18 months old, we went on our regular grocery shopping trip. His hands gripped the handle of the cart and his chubby legs threaded through the front slots. Aside from his darting eyes and special blue glasses, he looked like a “normal,” happy toddler. I stood a few steps away as I enjoyed the sight of a young girl giggling and trying to catch his attention. She smiled and cooed at him and he responded in kind.

Suddenly, the girl’s mother made a beeline to us, scooped her daughter up and said, “Honey, leave that boy alone. There’s something wrong with him.” She shot a sympathetic glance my way and scooted off. I stood there, not knowing if I felt worse for my son, whom I later decided was too young to care about the slight — or for her child, who was being raised by a parent with such a closed mind. This was a seminal moment. I knew I had to do something.

The first thing we did, as a family, was to move to Massachusetts so Campbell could attend Perkins School for the Blind, the same place that taught Helen Keller. It was not until he was completing high school there that we began to see the greater challenge ahead: life in the real world.

Campbell was accepted as the first blind student in a two-year university program specializing in working with young adults with mild cognitive issues and various special needs. But a few weeks into his first semester, I learned he was not being assigned homework or receiving classroom handouts.

I called his teacher to ask why he wasn’t getting materials. She responded, “I don’t know Braille, and he can’t read print. How he can do homework?” When I asked how the other students do it, she told me she emails the assignments and they send their work back. In response, I gave her his email address. I explained that not only does he have a screen reader to interpret email and websites, but he also has the ability to complete homework in Braille and send it back in print.

She made an assumption about Campbell’s abilities. And it’s these types of assumptions that prevent those who are blind from full inclusion.

Campbell has also faced discrimination in everyday social situations. During a recent visit to Miami, Campbell was excited to take a family friend out for a drink for her 21st birthday. They sat together at a swanky bar, his white cane folded by his feet, and he proudly ordered two glasses of champagne. Per usual, they both showed the bartender their IDs, showing they were of a legal age to drink.

As they were toasting, the restaurant manager, who had been watching from afar, rushed over to me. As he tapped his pointer finger into my arm, he demanded to see Campbell’s ID. Startled, I told him Campbell had just shown it to the bartender. He didn’t care. As I began to protest, Campbell patted my hand, saying it was OK, and handed over his ID. The manager studied the picture, said his ID was fine and walked away, but not before I told him that, “He can hear just fine — next time you need something from someone who is blind, you need to ask him.”

For Campbell’s whole life, I’ve been wondering how to change society’s perceptions of the blind. I knew it would take a major effort. This is why I’ve been working to launch BlindNewWorld, a social change campaign to disrupt stereotypes and inspire the sighted population to see the full potential of people who are blind.

In a recent study by Perkins, more than half of respondents reported they haven’t seen a person who is blind in the past year. But there are 7 million people in the U.S. who are blind or visually impaired. So I believe those who are blind have been marginalized to the point of invisibility. And because there is so little interaction between the blind and the sighted, fear, pity, stigma and discomfort rule the day. This needs to change.

At a time when there is so much social change happening, and technology is providing those who are blind with more opportunities to engage in the sighted world, I believe we can change the statistics and make blind inclusion second nature. Not just so my son can have the social, professional and academic opportunities he deserves, but so that everyone can.

Corinne Grousbeck is chair of Perkins School for the Blind. Follow the campaign @BlindNewWorld on Twitter.

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12 Ways to Make Universities More Inclusive for the Blind

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Here are 12 ways universities can make their campuses more inclusive to the blind. It’s based off of what I have personally observed and experienced at my university.

1. Braille labels.

It’s imperative that universities put braille labels on classrooms, offices, mailboxes, etc. At my university, braille isn’t everywhere. The other day while I was trying to find a class, I was feeling the wall to try and see if the room number was marked in braille only to find out that it was not.

Braille is how blind people like myself navigate the world. It’s our way of reading something, and yet, the importance of it is still not recognized, nor is it respected.

2. Electronic course evaluations.

The only time an electronic course evaluation has been used at my university is for online classes. All course evaluations need to be distributed electronically to students at all universities. It becomes really awkward when I have something to say about a professor or teaching assistant and have to get someone else to fill it out. Really, that’s something I should be able to do confidentially myself.

3. Make textbooks lists available earlier.

Up until this year, the textbook lists at my university didn’t come out until approximately two weeks (if that) before classes started. But this year, the textbook lists came out at the very beginning of August. This is a very big deal. It help gives someone who is blind more time to get their textbooks in an electronic format through the accessibility/disability/development center.

I have mentioned this a few times throughout my years at my university to a couple of individuals, so it’s nice to be able to witness the improvement, and I think all universities need to follow suit.

4. The contrast of stairs.

Most people who are blind or have low vision use a mobility aid (I use a guide dog), so this really isn’t an issue. But I’m mentioning this for those who may have a bit of useable vision.

I know this was helpful when I was little and could see stairs. Having stairs that are either light on dark or dark on light is helpful for people with low vision because it provides some contrast in identifying steps.

I’ve been told by a friend that my university has contrast stairs in at least one building, but I wouldn’t be able to tell otherwise or know of any others. It’s just something for universities to think about when designing new buildings.

5. An accessibility reporting system.

I think all universities should have a reporting system that enables anyone to report an accessibility concern or issue quickly and easily. I also think that feedback should be given with regards to the status of that concern or issue.

To me, that puts greater accountability on the universities to attend to it, such as a broken elevator. I understand things won’t be fixed instantly or there may be some cases where nothing can be done, but nevertheless, a reporting system would enable any accessibility concerns or issues to be directed at the appropriate contact to have them addressed.

6. Provide descriptions for videos used in classes.

This. Is. A. Problem. Universities, in all aspects, need to plan an activity and assume that there will be people with disabilities involved. This includes professors and lectures.

My professors, for the most part, have been pretty good regarding videos. A professor in my first year, without being asked, went “above and beyond” in a sense by emailing video descriptions to me beforehand.

Then, in my second year, we had to watch a video in a different language, so it had subtitles and was rather lengthy. My professor sent it to my university’s student development center to have it transcribed into a document. It worked out fine. This is what all professors should be doing, not only for the blind but for the deaf, too.

If the video has good narration, it really shouldn’t be an issue from the blind standpoint. However, chances are your university’s student development center can provide guidance on descriptive video options (if there are any available for the said film) and transcribe it if it’s in a foreign language.

7. Student development centers need social media accounts.

Universities’ student development centers should really have a social media presence. My university’s student development center does not have a Facebook or Twitter page. To me, this is very problematic since all other university departments and associations do.

Instead, they get in touch with us via email or our online learning site. This is totally outdated, and I think if they expanded themselves on social media, more people would know of their existence and their services. Additionally, they would be able to reach out to more people and obtain greater feedback that way.

8. Mentorship programs through the student development center.

It would be good, especially for first-year students, to be mentored by other students who use the center. That way, they will get guidance and learn about the center’s services from someone who has had experience and is in a similar situation as them.

9. Accessible interactions.

Professors and teaching assistants, it gets really awkward when you don’t know my name or take no effort in learning it, especially when I always take the initiative to introduce myself. When you don’t, things tend to go a lot like this when you ask the class a question and I raise my hand:

Professor: “Yes?”

Silence.

Professor: “Yes?

Me: (Thinking, “OK, yes. They probably meant me.”)

For some awkward reason, the second time an individual says “yes,” their voice always tends to go up an octave — or five — as if its my hearing that’s the problem, not my vision.

It’s our responsibility as students who are blind and visually impaired to tell our professors and teaching assistants our names, but it’s their responsibility to remember it.

Also, all university employees need to learn how to properly assist a blind person. What I mean by this is all university employees need to learn an assistive technique called “sighted guide.”

To my knowledge, this isn’t taught at my university during any accessibility training they receive. As a result, I’ve been “guided” when I didn’t even require assistance in the first place by people putting their hands on my back/backpack and “steering” me. Unacceptable.

Instead, the blind person actually takes the sighted guide’s elbow will then walk slightly behind you, so you can then “guide” them.

10. Location of the student development center.

I really like where my university’s student development center is. While it’s on the fourth floor of a building, there is more than one elevator that can be used to reach it. Once you get off the elevator, you have to walk a few feet, turn and you’re there. It’s very straightforward.

This may not be the case at other universities. It’s important to make sure students feel their center for disability and accessibility services is really “accessible” in a physical sense. If there’s only one elevator to reach it or if it’s in a complicated or hidden location within a building, then chances are it’s not.

11. Volunteers at social events.

My university has some pretty big social events. These tend to be primarily run by our students’ union. However, these really big events could be creating barriers for people with disabilities.

For example, my university has a vendor fair where a bunch of on-campus clubs, businesses and services at the university set up tables for students in a specific location for students to browse through at their leisure. It could really deter a new student who may have a disability from attending due to accessibility reasons. Having a couple of volunteers there to strictly help students with navigation and describing booths would be very helpful.

Not being able to participate in these events can be a big barrier in getting involved around the university. When I’ve been to events like vendor fair, I’ve had to ask each individual about their booth, which is fine for someone like me who is outgoing, but maybe not for others.

12. Accessible computer software.

Universities need to make sure all of the computers that they have available for campus-wide use have accessibility programs pre-installed. For Windows computers, this would mean, to my knowledge, Jaws and ZoomText. I strongly recommend that universities invest in Apple Mac computers, which have all accessibility features already installed, including a screen reader called VoiceOver and a very good zoom feature (speaking from experience).

Lead photo source: Thinkstock Images

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