Finding the Light When You're Losing Your Vision

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Light has played an important role in my life, both in a physical sense as well as a more symbolic one. In the physical sense, there is my inability, due to a visual impairment, to perceive light in a way that allows me to see like most people. I have a condition called retinitis pigmentosa that results in progressive vision loss, starting from the periphery and moving to the center of the visual field, and there is a good possibility that someday in the future I will lose my remaining eyesight. Today, I have less than 10 degrees of central vision remaining, which means that I am classified as legally blind.

It was only after I was diagnosed with my visual disability that I became interested in photography, which is all about playing with light. I approached photography not only as a personal challenge, but as a way to challenge the world and the way it sees me as a person with a visual disability. As a personal challenge, photography has encouraged me not to withdraw from the world, but to engage with it. Photography has encouraged me to get out of my comfort zone and travel, because as they say, “in order to take more interesting photos, you have to visit more interesting places.” I use photography to challenge assumptions about ability and disability. One of my favorite things to do is to pull up to a spot with my white cane and take out my favorite camera to take a photo (these days that camera is likely to be my iPhone). The idea is to use two things that are not often associated with each other (a blind person’s white cane and a camera) to challenge assumptions about what it means to be blind and what blind people can do. In this sense, photography is a tool I use to educate others.

In a more symbolic way, light refers to the role education and educators have played in my life. I have been fortunate to have a number of mentors in my life. One of those was Julio, the social worker who was assigned to me when I struggled in school after arriving in the U.S. as a non-English speaker. In the middle of a somewhat chaotic transition to a new country, a new culture and a new language, Julio became my lifeline. As a strong Dominican-American male figure, Julio became my role model for what I could achieve if I applied myself and pursued an education. My second mentor was Profe Rick. Although Profe was the Spanish teacher at my high school, and I didn’t take Spanish, he became a trusted friend without whose support I would not have made it through boarding school.

Just a few years after I arrived in the U.S., I received a scholarship that allowed me to attend a Quaker boarding school for ninth grade. This was a turning point in my life. The motto of my boarding school was “Turn to the light,” a saying that captures the Quaker idea that each of us has an inner light that represents that of God within us. While I am not a religious person, this idea of inner light left a lasting impression. It has guided my work throughout my life, including what I do today as an inclusive learning consultant. My goal in this role is to find that inner light in each person, that spark that represents each person’s potential and ability to contribute. Just as Julio and Profe Rick found that spark in me and lit my inner light, I try to look for ways in which technology can empower learners who face similar challenges as the ones I faced in school to find their own inner light and unleash their potential. What keeps me going in this work is what I call the “magical moment:” that moment when you see the spark in a person’s eye that lets you know you’ve changed their life for the better in an instant.

I had such a “magical moment” a decade ago when I first encountered inclusive technology. I had just been diagnosed with my visual impairment and was struggling to find my way through a master’s degree in instructional technology at the University of South Florida. At around that time, Apple had released OS X Tiger with the VoiceOver screen reader and the advanced “Alex” voice. What made this a “magical moment” for me was the message I got from the technology. It was a message of hope that everything was going to be OK because there were really smart people working on technology that would allow me to accomplish my goals even if I lost my remaining vision. In this way, “Alex” spoke to more than just my ears and my brain — it spoke to my heart and my soul. It was the spark I needed to persevere in my studies and go on to complete my master’s degree and later my doctorate.

When we think of light, we often just think of it only in the physical sense, that light which allows us to perceive the colors and beauty in the world around us. But light can be much more. It can be our inspiration, our spark that keeps us going and allows us to overcome the challenges we face in our lives. For me, light has not only been the physical light I have been losing with every passing year, but the symbolic light I have gained through the people and technology that have come into my life to allow me to have a meaningful and fulfilling life.

My challenge to you is this: How will you be that light for somebody else? More importantly, how will you help them “turn to the light” and find their own spark?

photo taken by luis that resembles an eye
A photo taken by Luis

Follow this journey on Luis Perez Online.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines. 

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Why I No Longer ‘Hide’ My Vision Loss

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It was May of 2008 and the sun was blazing as my dilated eyes flooded uncontrollably with tears while I walked home from the optometrist’s office. His words rang through my head. “I’m 99 percent certain you have retinitis pigmentosa (RP). I’m very sorry.” I had never heard of this disorder until a few months earlier, but by Googling my symptoms, I was sure I had it — but also sure he was going to tell me I was wrong.

I went through all the emotions. I didn’t know if I’d be blind next month or when I’m 90. Neither did the specialist. “I’ll never go blind. I will never forfeit my car. I will never…”

My daughter told me things she looked up online, like advice to “eat more carrots” and certain vitamins. My family back home pretty much did not acknowledge it. No one seemed to understand but me. I was on my own.

I tried therapists who asked about my mother or gave me the definition of RP, which I knew already. The specialists would measure the stability or decline, which I could do myself for free. I was done with any healthcare whatsoever. The National Federation of the Blind sent me a cane, which collected dust in a corner.

I tried Chinese medicine and went to a shaman and a lot of bars. I spent a fortune on any herb I read about for eye health. At one point, I was choking down 10 supplements every morning.

About four years into it, driving became a paranoia trip. I was face-planting into strangers and not recognizing friends. I decided to look into the Braille Institute, which was suggested to me back in 2008. Maybe they could help me with driving? I signed up for some music classes, but soon dropped out, since I was not like “them.” I stuck with my regular activities such as improv, which resulted in disaster. I was noticing major errors in my proofreading job, which slowed down my production, as I was proofreading my own proofreading and editing. I then found out I was developing cataracts, which come early with RP.

Without notice, the five-year contract for my job was not renewed. Knowing that my driving days were numbered, I took my car on a foggy road trip along the cliffs to Big Sur, California. I had two accidents the following week. I thought the cars were moving, but they were not. I painfully sold my car, which was a step toward acceptance. I failed every test I took for a new proofreading job. I realized it was no longer an option, and neither were simpler jobs, like a barista, that I had applied for.

After a year of struggling, I decided to move out of the hills, closer to transportation. I could go back to school and possibly find a therapist.

Steps one and two were under way. Then by a miracle, I found a therapist who lost her sight in adulthood! In our first meeting, I saw a beautiful, stylish, confident, independent woman with a fancy office in Beverly Hills. “Hey, this doesn’t look so bad,” I thought. After learning that I refused to carry a cane, she brought me a folding cane that I could “hide” in my purse. It took a couple weeks before I put it in my bag. I would occasionally use it if I were in unfamiliar territory after dark, then in the busy train station where I was most clumsy. Suddenly, people on the sidewalks were moving out of my path. People were asking if I needed help. The cane had perks!

I was in the train station once and two tough-looking guys were rushing past. One told his buddy, “Wait, I gotta do something.” He came over to me and asked if he could help me. I told him I was going to the escalator. He took my arm and said, “I’ll take you there.” I could see it, but I let him do his deed. That moment showed me the true beauty of compassion. That day still brings tears to my eyes.

On the flip side, the cane makes everyone believe I see nothing. There are adults who jump in my path and wave their arms or just see if I will walk into them. This happens daily from well-dressed 20 to 50-year-olds. There are head-turning stares. Conversations stop. Some people tell me I’m beautiful, with a lot of emotion. I like to think I’m like a celebrity, minus the paparazzi. I also keep a sense of humor about it, like when strangers say, “I’m sorry.” I reply, “Oh, so you’re the one who did this?” I try and focus more on people like the man in the train station.

Today I am in TV writing and journalism classes. I live in the awesome city of Los Angeles where I have transportation and everything I need at my fingertips, plus a great community. I will never give up hope that there will be a natural cure for this, although my vision has diminished greatly. My cataracts are worse. I can’t see people further than an arm’s length away and I see six to eight moons. My periphery tunnel has shrunk to a mere 7 percent. With lighting, sunshine and weather, my vision can differ.

A bicyclist recently broke my folding cane. But instead of getting a new one, I decided it was time to swallow my pride and dust off the first one — the one that doesn’t fold. No more hiding out.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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New Device Can Help Blind People in a Way Canes and Guide Dogs Can’t

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A new device is adding an extra layer of protection against accidental injury for blind people.

Canes and guide dogs are useful tools, but they’re often unable to protect blind people from hazards that come from higher up, such as tree branches or low-hanging construction.

Bin Liu and  Arjun Mali, two University of Toronto graduates, have come up with a device that can alert users to high objects a cane or guide dog can’t warn against. Called BuzzClip, the device clips onto a lapel or collar and vibrates when it detects objects nearby, according to an IndieGoGo page. Users can set the device to spot objects as far away as 6 feet.

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Diagram of the BuzzClip via iMerciv Inc. YouTube channel.

It uses ultrasound to detect obstacles in front of it at head level, a similar technology used in car reverse systems. When fully charged, the device should last up to 10 hours.

Despite its intended purpose of preventing accidental injury, users have discovered new uses, including searching for lost items and gauging when the person in front of them is moving while waiting in a line.

See the BuzzClip in action in the video below:

Liu, a civil engineer, came up with the device to help his father, who has glaucoma, CTV News reported.

“He has a lot of vision left, but he’s over 50 years old so it’s only going to get worse,” Liu told the outlet. “My intention was to create something he could use.”

Mali got on board with the project quickly because he’s spent may years volunteering with his family at an orphanage for blind children in India. Mali and Liu have been able to allow the children at the orphanage to test out a prototype of the device.

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Image of the BuzzClip prototype being tested at an orphanage in India via iMerciv Inc. YouTube channel.

The business partners created a company called iMerciv to sell the device and have raised more than $61,000 through their IndieGoGo crowdfunding campaign.

Get more on the BuzzClip from the video below: 

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What You Should Never, Ever Say When You Meet Someone With a Disability

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When you meet someone with a disability, never ever, ever, ever, ever, ever say “I’m sorry you have a disability.”

No!

Don’t do it.

It drives us crazy.

Let me take a step back for a second.

To me, as well as many others, disability is a huge part of my identity. Just as much as I am a woman and Caucasian and a law student, I am also blind. It’s a facet of my personhood.

So now going back — if you say you are sorry I have a disability, it’s equivalent to telling me you are sorry that I am white, or that I am a woman. I don’t know about you, but I find that really offensive. I would never tell Taylor Swift I’m sorry she is a white woman. (Although I might say I’m sorry for her for other reasons…)

Now, you may be saying, “Claire, I would never say such a thing.” But I’m writing this because it happens more often than you would think. I’ve had people, in the strangest circumstances, tell me they were sorry. I have had strangers on the street or at the bus stop apologize; I have had pizza delivery guys and baristas apologize. You name it and it’s probably happened.

I’m proud to be a member of the disabled community. So please, please, please do not pity me for having a disability. The journalist Joseph Shapiro wrote a book called “No Pity” that I strongly encourage everyone to check out. It walks through the history of the disability rights movement and explains the frustration with the word “pity” far more eloquently than I am.

While I’m writing this post, I feel obligated to emphasize that most of us equally abhor being called inspirational. Don’t do it. Please, please, please, just don’t do it.

We find it especially condescending. We have learned to do things differently. We have adapted. So when you tell me that I am inspirational because I can live on my own with a disability, it’s offensive. I’m almost 27 years old. Yes, of course I am capable of living on my own. One of my closest friends, Cristina, who is also blind, and I used to tease each other about our “inspirational status.”

“Claire, you are so inspirational.  You can eat all by yourself!”

“Cristina, you are so inspirational because you can get dressed all by yourself!”

“Claire, you are so inspirational because you can go out in public!”

“Cristina, you are so inspirational because you can breathe all by yourself!”

I wish there was a way to adequately convey in words the sarcastic and mocking tone of our voices during such conversations.

Cristina and I call it the “I” word, and Carrie Griffin Basas, a successful disability rights attorney and someone I look up to, calls it inspirational porn.

Now let me clarify. I’m not saying you should never recognize the obstacles people with disabilities face. On the contrary, I do appreciate when people respect some of the barriers I face as a person with a disability. Our society still has a long way to go to be fully accessible. I appreciate when someone recognizes that. I appreciate when people stand behind me when my rights are violated and acknowledge it’s unjust. Additionally, I’m happy to be an encouragement to others who have recently acquired a disability and see me as a mentor. All of those kinds of situations are completely understandable.

But there is a big difference between that and feeling bad for me and thinking I’m a superhero for being able to brush my teeth on my own. Respect people with disabilities for things they should be respected for. Just don’t pity us.

Follow this journey on An Unseen Perspective.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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What I Want You to Understand About the 'Supercrip' Stereotype

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I’ve been wanting to write on this topic for awhile now. It’s an intriguing concept in the disability world. But it is also something that has been salient in my own life as of late.

Let me back up. I took the Pennsylvania bar this summer. Well, I found out last month that I unfortunately did not pass. Understandably, I was upset. I worked so hard. But more than being upset, I felt, or rather, still feel embarrassed. I felt like a failure. Why didn’t I pass.

But why?

Why should I feel like a failure? I graduated from law school. And not passing the bar is a perfectly normal thing. John F. Kennedy Jr. didn’t pass the bar the first time. True story.

So what does this have to do with disability culture?

I think a large reason for my shame comes from the idea of being a “supercrip.”

Supercrip is this stereotype that has formed around many people with disabilities. People look at us as these inspirational models. Wow, look at Claire, she is blind but she still went to law school. That’s amazing! One of the bar prep professors this summer announced in front of everyone that she was impressed that I had went to law school and was studying for the bar. People see us as these inspirational stories to gawk at.

Also, people see the supercrip as superhuman. If you have a disability in one area, then you more than make up for it in all other ways. If you are blind, you have superhuman hearing and can hear a pin drop from a mile away. In high school, I often felt pressure to be the supercrip. Because I was the only blind student in my honors classes, I felt like I had to work super hard to prove that blind students could do well in school too.

But let me tell you. It’s exhausting. Why should I have to be superhuman? Why must I prove that beyond my disability I am some superhero. I mean, I like Daredevil and all, but there is a reason Matt Murdock is found in comic books, not in real life.

But let’s get real. Yes, persons with disabilities can do anything persons without disabilities can do. If you know me, you know I believe that with all my heart. I have a friend who is also blind who is working on his PhD in chemistry.

But don’t look at him as a supercrip. He has faced numerous obstacles in the pursuit of that PhD, both as a result of his disability and a result of society.

Having a disability still presents obstacles. I read Braille, and no matter how well I read Braille, it will always take me longer to read then my sighted peers. So when I took the bar in Braille, I was always going to face that challenge.

Being blind presents its challenges. I’m not saying this to elicit pity. If you know me, you know that is the last thing I would ever want to do.

No, I’m just trying to debunk the supercrip stereotype. Sometimes in life, I am just going to face some challenges that are unique to my disability. Many blind attorneys I know had to take the bar more than once because in reality, it’s just harder for us, it just is.

I didn’t pass the bar, and I’m fairly certain my blindness played a large role. It’s just the reality. But I shouldn’t be embarrassed about that.

But I don’t have to put on my supercrip cape and overcome every obstacle just to prove that having a disability doesn’t make some things in life a little bit more difficult.

Am I making sense? Please let me know if I’m not making sense.

So let me summarize the moral of the post. Stop thinking that people with disabilities need to be these inspirational icons who can overcome anything and everything. Yes, people with disabilities do some pretty bad-ass things all the time. But we also face obstacles. Lets stop thinking it’s either or, that you either can’t do anything or you can do everything.

Signing Off,

  An Unseen Perspective

Follow this journey on An Unseen Perspective.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To Santa, From the Mom Whose Child Asked You to ‘Fix Mommy’s Eyes’

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Dear Santa,

I’m writing this letter on behalf of my daughter, who’s almost 3 years old. Christmas has taken on a new meaning since this tiny blessing came into my life. Being the daughter of a blind mom isn’t easy for her, Santa. She may be young, but she already knows her mommy is “different” from other mommies.

This Christmas is supposed to be extra special for us, because it’s the first year that my daughter actually “gets” it. You see, she knows who you are. She was absolutely elated when we met you at the mall. She is literally bursting with anticipation about your impending arrival on Christmas Eve. But the thing she wanted to do, more than anything else, was write you a letter.  And that’s where we have a problem. You see, Santa, we have a bit of a situation.

While decorating our front lawn last week, my daughter and I were approached by a neighbor who asked her what she wanted you to bring her for Christmas. Being the friendly little girl that she is, she immediately rambled off a least a dozen things she’d like to have under our tree on Christmas morning. Our neighbor kindly listened as she eagerly ran through her list. When my daughter had finished, he jokingly suggested that she should ask you, Santa, to fix her mommy’s eyes for Christmas.

You can imagine my shock when I heard such a suggestion from a grown adult to my child! I’m not usually the type to be at a loss for words, but this comment really caught me off guard. I quickly made an excuse about needing to take something out of the oven and took my little girl inside. At first, she seemed to have forgotten about the entire ordeal. She went about her afternoon, playing and watching cartoons, but then it happened.

My daughter asked to write you her letter.  We sat at out kitchen table and she handed me her favorite blue crayon.

Holly’s two children sitting with Santa

“Mommy, can you tell Santa I want:

1. The Paw Patroller

2. Doc McStuffin’s Pet Vet

3. Little Tikes Tumble Train.”

And just when I thought I was out of the woods, she paused and added:

“Oh, and fix Mommy’s eyes.”

Well, Santa, it broke my heart, but I had to explain to my little girl that on this particular request, you wouldn’t be able to deliver. I told my daughter that the type of magic you possess only allows you to bring things that can be wrapped in paper and tied with bows. I explained you were not a doctor and could not make her mommy’s eyes better. I told her you are not God. You can’t make me see. And no offense to the big guy upstairs, but when I pray, Santa, that’s not something I even ask for. Really, it’s not.

You see, it’s taken me a long time, but I’m happy with the person I have become. I’ve adjusted to life with my disability. I am extremely blessed to have the family I’ve got, especially my precious little girl. I understand that being blind is one small facet of the person I am. I don’t need to be “fixed,” Santa, because this mommy isn’t broken.

So, on behalf of my daughter, please grant her Christmas wish by bringing every toy on her list this year.

Holly’s daughter wearing a “sous chef” apron

As for me, Santa, I know you’re not real. However, you represent a piece of her childhood and an opportunity for me to create memories that she will take with her into adulthood. I want her to know there is magic in Christmas, just not the kind that involves medical miracles.

The greatest gift I can give my daughter is teaching her that even though her mommy may be blind, I still have vision. I “see” my little girl. Maybe not in the traditional sense of the word, but I “see” her. I know she is kind and good-hearted. I know she is extremely smart. I know she will leave her mark on this world, not because I can see it, but because as her mother, I can feel it.

I love her, Santa, to the North Pole and back! And whatever the future holds for her mommy’s health and eyesight, nothing in this world will ever change that.

Merry Christmas, Santa!

Love,

A Blind Mom

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness during the holiday season. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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