When People Ask Why I Work When I ‘Struggle’ With It

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I often get asked a question frequently from strangers or the occasional rude guest at my booth that just rubs me the wrong way. It takes on many forms and is often phrased based on the conversation or situation at hand.

“Why do you have a job when you struggle so much at it?”

“Why bother working all these hours when your body/mind can’t handle it?”

“The government can take care of you. Why keep this job when you can be out having fun?”

Usually in these situations, I’m unable to answer the way I want to and I just hastily reply, “I just love what I do.”

In reality, that is true. I enjoy meeting people from all over the world who come to my booth at the happiest place on earth. But my reason for working isn’t all positive.

I was raised to take pride in what I do, and sitting at home all day tends to make me even more depressed. I am legally blind, and I also have depression and anxiety. My eyes are in pain a lot, and my mind can hurt just as badly sometimes (though it’s better now with treatment). Working sometimes puts a big strain on me, and I often come home wiped out and in pain. I have to put in twice the effort as others to do the same job, keeping pace with them despite getting bouts of double vision and migraines.

I work twice as hard to make it to where I’m at. The many programs out there to house me and pay me for food and such denied me because I’m too high-functioning or there isn’t enough funding. Friends I grew up with who have various disabilities are stuck on waiting list after waiting list hoping they’ll get that help they need.

We all strive for independence like anyone else. I put up with long bus rides each day on top of added work stress to make my dreams work. But what about those of us who can’t?

I cringe when my co-workers ask questions like that, and I cringe even more when it’s a guest. I can’t be truthful because not only is it unprofessional, but it would result in a long explanation that not many people want to take the time to hear.

I wish more was done for others in my footsteps as well as those of my friends. All we want is to be on a level playing field as anyone else — a job, reliable transportation options, housing and whatever staffing or coaching we need to get there.

But I’m impatient. Why wait for a phone call that may or may not happen?

I work because I refuse to settle for less. My differences make the chase for the American Dream harder, but to me, it’s worth it.

Because I am worth it.

Mandy Ree

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.

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When It’s OK to Be Inspirational for Having a Disability

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Having a visible disability comes with its own sets of challenges. Sometimes people pray over me or give me unsolicited advice. But the most frustrating for me is when they are inspired by me when I have not done anything deserving of admiration. Recently The Mighty highlighted Robyn Lambird, a teen who talked about the need for speaking positively about disabilities. One point she brought up in her video was that by admiring every small accomplishment of people with disabilities, it diminished the worth of any significant achievements.

One moment that speaks to this and illustrates Lambird’s point occured my freshman year of college. I walked into an Applebee’s restaurant, guided by my Seeing Eye dog, a black lab named Cloud, with my mother. We sat down and did what everyone does at restaurants — ordered food and chatted. Someone walked up to our small corner table, and before I could inquire about getting more iced tea, the person blurted out, “You are so inspiring. You know we all take so much for granted, and here you are. Thank you for your bravery.”

Internally, I was furious but I could not find the right words. “Thank you,” I said. The words fell flatly on the cheap wooden chain restaurant table.

“She meant well, you can’t get mad,” my mother would console me later.

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Kit and her Seeing Eye dog (photo by Blossom Vydrina)

This was not comforting, because I was angry. All the woman knew about me was that I was able to walk into a restaurant, order food and socialize, and I exceeded her expectations of me. She had no idea I was in college, or that I had made the dean’s list my first semester. I woke up and left my house, and that was enough. I had fulfilled my life requirement.

In December 2015, I graduated with my Bachelor of Fine Arts, six years after the incident with the woman at Applebee’s. Six years later I’d done a lot more than just attend college. I walked across the stage with my new Seeing Eye dog, a golden retriever named Solstice, shook the president’s hand along with a few deans, and accepted the diploma case. My dog guided me effortlessly back to my seat. I was hyper-focused on that stage, making sure to follow my dog perfectly, to see where the president stood, to shake her hand and the next hand, and to take the case. I had to find the stairs, walk down, get oriented and walk back to where I needed to go. My friend told me later that she cheered for me, and a few other people did as well.

As all the graduates filed out of the Athletic and Fitness Center where the December graduations are held, I followed the marshall, who also happened to be my boss at the office for students with disabilities. From the crowd, someone I didn’t know shouted, “You go girl! You had to work twice as hard and you deserve it!”

We walked out, I hugged my boss who had helped me through college by scanning, Brailling, reading, and doing anything else I needed. I hugged professors. I cried a little. We all walked to the reception hall and stopped to stand by a table for four to wait for my parents and my friend to meet me, and I thought about what that woman had yelled — and I wasn’t angry.

Around my neck was a deep red stole from Sigma Tau Delta, an English honor society, and in my hands was a diploma. By receiving a diploma, walking across a stage solo, and being noticeably marked as an honor society member, I had exceeded that woman’s expectations. In this one situation, that was OK. I earned the praise. I did have to work harder, having lost my vision for a second time partway through my college career. This time, it was OK to be inspirational.

The next week on the bus with Solstice, a man I didn’t know sat next to me and brushed my skirt aside to pet her head, which was between my knees. “You and your dog are amazing,” he said, ignoring not only my personal space but my recent very real accomplishment as well. “Positive thinking” about disability means believing that people with disabilities can do more than leave their house: they can be parents, coworkers, friends and meaningful and productive members of the global society.

So instead of telling every person you see how inspirational they are, save it until you meet someone who has actually done something you personally admire. When you find that person, tell them you admire them, because then it will mean a lot to them,  just like it does for anyone else.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

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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?

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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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