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    Community Voices

    How Blindness Led Me to My Life’s Work

    When I was 18 years old, I started to lose by vision. As an athlete, the signs, at first, were small – missed passes from my teammates on the basketball court. Losing a fly ball in the air at my baseball games. Not following my golf ball’s trajectory on the course. I went to see a doctor thinking that it was something perhaps with my brain and was shocked to eventually learn I had Retinitis pigmentosa (RP) – a rare, degenerative eye disease that makes cells in the eye breakdown over time – eventually causing vision loss. I have one of the most severe cases of RP that one can have – and by age 30 I was completely blind.

    For years, as I worked through a range of emotions, I always knew one thing - I was determined to not let RP define who I am or what success I find in my life. Up until the point of my diagnosis, I had planned on being a doctor – and while that course was, and remains, unavailable, higher education and career fulfillment is absolutely not. Through a lot of tenacity, problem-solving, failure and entrepreneurship, two years ago I found myself starting a new job at NSITE just outside Washington, DC. Here, I have found my deepest purpose – helping blind and low vision individuals find jobs, while also helping companies and products make their tools more accessible to everyone. In my spare time – I’m entering my fourth year as a goalie for the U.S. National Blind Hockey Team because being blind has never dimmed my love of sports!

    The journey to this role and this life was not a straight line. I hope as part of this community I can share a bit about my path in the hopes it shows other blind and low vision individuals how they can find fulfilling personal and professional lives, even in the wake of the unexpected.

    I’m always happy to talk to anyone who has lost vision at any stage of life, to help them understand what steps they can take to come to terms with their diagnosis, and when ready, start to think about what is next.

    I look forward to learning more from you all, too.

    #Blindness #RP #Blind

    Kamala Harris Shouldn't Be Attacked for Using Visual Descriptions for the Blind

    Vice President Kamala Harris broke new ground for accessibility when she used a visual description in a White House roundtable meeting with multiple disability advocates. The meeting, which occurred on Tuesday, July 26, was held to commemorate the thirty-second anniversary of the passage of the Americans With Disabilities Act. A now-viral clip of the event shows Harris describing her appearance in order to make the roundtable more accessible to those who are blind or have visual impairments. “I am Kamala Harris, my pronouns are she and her, and I am a woman sitting at the table wearing a blue suit,” the vice president explained. Some political leaders — including members of Congress — have mocked Harris for her decision to kick off the roundtable meeting with a visual description of herself. However, visual descriptions can help both blind and visually impaired people feel more in tune with their surroundings and pick up relevant environmental cues. Using these descriptions in an important meeting revolving around issues affecting the disability community could help participants feel welcomed and included in a way they may not in everyday life. The National Federation of the Blind has not taken a firm stance on the use of visual descriptions as an accessibility tool, but Chris Danielson, a spokesperson for the organization, says the use of visual descriptions is complex. According to Danielson, some blind people welcome the use of visual descriptions, while others believe the practice detracts from creating accessible presentation materials for meetings and isn’t necessarily an accommodation the blind community requests. “It kind of seems to some of us like one of those things that sighted people have decided to do, but it’s not necessarily something we said would be helpful,” Danielson elaborated. Anil Lewis, the executive director of blindness initiatives at the National Federation of the Blind, has a slightly different take on the use of visual descriptions. Lewis said that while not all members of the blind and visually impaired community fully support the use of visual descriptions, including a description is “useful for those who want it, while those who don’t can ignore it.” Regardless, Harris shouldn’t be attacked for her decision to include a visual description in Tuesday’s disability roundtable meeting. “Attacking [Vice President Harris for using visual descriptions] is inappropriate because the intent is at least inclusive,” Danielson concluded. Accessibility often starts from the top down, so Kamala Harris’s decision to use visual descriptions in a meeting with disability advocates is a step in the right direction— and doesn’t deserve mockery. Hopefully, more people use Harris as an example of how to strive for inclusion and educate themselves about how to make events accessible not just to the blind community but also to the disability community as a whole.

    Community Voices

    I might have prosopagnosia like Brad Pitt

    <p>I might have <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceae00553f33fe99ae6a" data-name="prosopagnosia" title="prosopagnosia" target="_blank">prosopagnosia</a> like Brad Pitt</p>
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    Community Voices

    'Say Yes to the Dress' Features a Blind Bride

    Shaela said yes to the dress! If you are like me and you can’t stop watching TLC’s hit show, “Say Yes to the Dress,” then you know you’ve seen hundreds of different types of brides over the years. What I saw for the first time while catching up on old episodes a few nights ago, was a blind bride featured. Shaela Warkentin was a bride on the 20th season of “Say Yes to the Dress.” She explained how at 15, she was in an accident with a driver under the influence that ultimately left her disabled and without her vision. Due to her accident, she lost friends and a lot of people due to the new communication barrier, as she described it. She was hoping things would return back to the way they were prior to the accident, but they didn’t. She had a personal pessimistic outlook on love, “Because I mean, who wants to be with someone who can’t see? But then, I met Tyler.” She met her fiancé while in college and the rest was history. He proposed on the beach and soon after she jumped into bridal mode. She describes what matters to her in a wedding dress – textiles and feel . That and she wanted a little bit of shimmer where it’s not too plain but not too much. Her bridal assistant, Lisa, jumped on it. Her first dress was a shimmery A-Line dress with a lace bodice, plunging sweetheart neckline, and spaghetti straps. Her entourage for the most part loved it, but her mom had her small reservations. She felt good in it and was excited, but it wasn’t the dress for her. Dress number two was a dress from Randy’s line (as can be expected with this show). She liked the dress and the sequins, and while it felt good it still felt off, but she couldn’t put her finger on it. Personally, I could tell very quickly this wasn’t the dress for her but maybe that’s my background in working bridal boutiques and events that made it obvious. It was romantic, but it wasn’t sexy, and that’s what she wanted. She physically felt dress number three before putting it on. “It’s so detailed and I love that about it.” She was beaming as she walked out, which competed with the radiant smiles of the people she brought. “Do you love it?” Her entourage asked. She replied, “It’s everything.” She loved the different fabrics and textures, and it felt the best in the midsection. “It’s interesting because I’ve had such a hard time describing what it is I want, but when I have this dress on me, I feel that exact feeling that I can’t describe.” Randy Fenoli agreed that she felt beautiful and her fiancé would love it. Everyone was in agreement when a veil was put on her head. This was her dress. Shaela said yes to the dress eagerly. In the past, the show featured the “bionic model” Rebekah Marine onto the show, a disabled woman with a high-tech prosthetic that mimics muscle movements. This isn’t their first time featuring a disabled bride, and hopefully, it won’t be the last. Congrats to Shaela and we can’t wait to see her wedding day play out!

    Community Voices
    Community Voices

    Why I created living with hypoglycemia

    So I’ve been in a mental crossroads of sorts and finally have some time to get my thoughts together.
    The main point of this group is to share knowledge and stories about this way of living that many people don’t understand the hardships of. It’s also to get rid of the stigma about having hypoglycemia just from diabetes and skinny people needing to eat more.

    My personal story for creating this:
    So in high school I was failing math and was told to have the first 15 minutes of my lunch break as a study hall; well I kept clear vomiting during that period. My mom took me to my monthly stomach doctor appointment (IBS and GERD) thinking it was related to my stomach issues, after some blood test and a physical exam showed no sign of diabetes or obstruction she told me that I was having hypoglycemia. She said that with my body size and metabolism that I need a consistent flow of complex carbohydrates and sugars and protein in my body to keep my energy intake from dropping. I was given a doctors note to allow me to eat in classes and so I began to drink protein shakes and fruit juice and granola bars, plus keep glucose tablets with me at all times.

    As the years went on I kept a list of symptoms of hypoglycemia with me so I’d know what to do and warn people that if I start acting a certain way to force me to have a break and eat something. I even told people that I say angry inappropriate words when I get that way and showed them the websites that prove that it’s a real symptom.

    Now to the most recent incidents that made me breakdown to create this group:

    Before I lost my full time job I was having hypoglycemic episodes there just about once a day (note that it was a toxic workplace environment with toxic people at it’s core) and my coworkers did nothing to help. My body had gotten used to a break schedule where I got 3 breaks every 4 hours on a 12 hour work day, it was this way for a year and a half. Out of nowhere management decided to change the break schedule and told me I couldn’t eat or drink during work. My body went into shock and I began getting: cold flashes, dizziness, pale skin, tremors, muscle weakness, painful headaches and cursing. Every time this would happen my coworkers blamed it on my behavior telling me that I was in control of what I was saying and doing. I went through glucose tablets every day and soon they stopped helping, one time my tremors were so bad I couldn’t open them. My boss told me to get a glucose monitor but that wasn’t covered because I’m not diabetic. My coworkers kept saying “well we haven’t eaten and we’re doing fine” or “if we can’t get a break then you can’t either”, “you’re being unreasonable”. I even got a doctors note saying I had to have regular breaks to eat because of my medical condition but my coworkers thought it was unreasonable and an excuse for me to do less work, my job coach (I’m on the autism spectrum) even said it was an unreasonable accommodation that isn’t covered by the American’s with Disabilities Act or the Job Accommodations Network. I got so mad about this I started to have frequent verbal altercations with my boss and coworkers. I threatened to go to the ER for glucogon and was afraid of getting hypoglycemia blindness in the future.

    When I got fired from there I was kind of relieved because I could have less episodes and eat regularly. Unfortunately when I went to Disability,Aging and Rehab Services to reopen my employment case my case manager told me that I will most likely never find an employer to allow me breaks and eat during the job, she told me it was unreasonable and for me to get over it.
    I wanted to scream at her. After that meeting I realized that consistent hypoglycemia is not a recognized disability and that I can’t be the only one to live like this.

    Community Voices

    My Admission.

    If you don’t like to talk about, deal with, or have feelings, I strongly hope you never have a health crisis. For if you go through a health scare you will experience a large range of emotions that include everything from shame to rage. You won’t be able to control them and they will take you out like a tidal wave. Better yet, others will run from them like they are Tsunami. You can feel like a lone survivor after the devastation.

    I went through a phase where I laid awake at night asking myself and the universe what I had done to all of the sudden be fighting #Blindness as I watch others wash their Doritos down with a Coke? People say silly things like thanking me for sharing something so private as if having a health issue is something to be ashamed about. If we should be ashamed of anything as a culture, it should be for perpetually invalidating the way people feel physically and mentally. I did nothing wrong and didn’t deserve this path. I even checked in with Santa and J.C. and they said the same.

    I have survived and not only continue to survive, but thrive because my own health protocol includes just sucking as much juice out of life in the here and now. While I fight for my sight, I have put to bed that the future may be very different for me; it may be very dark. But I don’t live in the future and while I try to make good decisions that will help me down the line, I live in the now.

    It has taken me some time to put this down on paper and I have never once had a discussion about what life would be like for me in the future if I was blind. I mean, who wants to talk about that? Nobody, especially not me. But the reality of the possibility looms in the background.

    There was a time, when my mental state was not good, mainly due to Prednisone. I had plotted to hire a lawyer to get all things in order and I had intended to tell a dear friend that I would be considering taking my own life if I became blind. I didn’t want to live dependently and as a burden. Though I can’t grasp what life would be like for me without sight and I don’t want to think about it, I love my life and the people in it far too much to walk away from it. I intend to live and when I use the word live, I do mean the action of living.

    Yes, I have a blow-up doll, but I don’t have anyone to take care of me. I never really have and I don’t think anyone knows what that looks like because the people who know me know that I just do everything my way and on my own. But when you feel like hell in a pandemic and your brain is defying you, you learn you have to lean pretty heavily on others even when it is hard to ask.

    A few weeks ago, I took my niece out for some chicken wings and to go shopping. I used to always tell her that she has to take me out for pie when I am old, but this time the ask was bigger. I asked her, casually, that if I were to go blind and we had places to go, she would make sure I had nice outfits, and that my hair was combed. I asked that for special occasions, she would put red lipstick on me. She agreed; we discussed it no more and I bought her a big bag of saltwater taffy as a reward for listening to her ridiculous aunt.

    Recently, I was van camping with my friend Christian who invested a lot of time and resources into converting a van into a home. I made him promise that if I go blind that he would take me on a long trip to vineyards all over Washington and Oregon letting me taste all the local wines. He promised and also told me he would describe all the scenery to me as beautiful even if it was a dump.

    In these two conversations, there was an underlying secret agreement. There was an ask for help and a confession of fear. I asked in other words, “if I go blind and it is hard for me to take care of myself, will you promise not to leave me?” It is these conversations that tell me I will be ok no matter what.

    My admission is that I am afraid of going blind. I am very afraid of not feeling well or like my old self again. I am terrified of having to ever be on Prednisone again. But even more so, I am afraid of wasting any more time in this sacred life and body not savoring every brilliant moment and every amazing person.

    I realize this type of statement makes some people want to delete me because they think I a full of shit. Yes, I don’t feel like this every day. I often do things like swear at and curse out other drivers for being in my way, but I am trying to put my sights on what is good…at least while I still have them.

    Visually Impaired Actor and 2nd Grader Karl Seitz From 'This Is Us'

    When The Mighty learned that a member of our community was involved in the final season of “This Is Us,” we jumped at the chance to talk to them about their experience. We are excited to introduce you to 7-year-old Karl Seitz and his mother Katrina. As soon as we connected on our Zoom call, Karl quipped, “Karl Seitz, at your service.” He spelled out his name, making sure I knew that it started with a “K” and not a “C.” He asked my name, explaining that as he is visually impaired, it helps when people introduce themselves to him. After appearing as an extra on “This Is Us” in a previous season and in local plays, the charismatic second-grader auditioned and was cast as 7-year-old Jack Damon/Jack Jr. for season 6 (the show features three visually impaired actors to play the character Jack Damon at different times throughout his life). The production made several accommodations for Karl’s days filming, including having a Braille teacher on set. Fun fact: they used a pack of Braille playing cards in one of his scenes. Karl was born with bilateral Peters anomaly, a rare genetic condition that clouded the front of his corneas and severely limited his vision. Over the last seven years, Dr. Bibiana Reiser and her team at Children’s Hospital Los Angeles have cared for him, checking his eyes monthly. Karl has undergone 21 surgeries, including several cornea transplants, and was able to gain some of his vision. Karl also works with his teachers, visually impaired experts, and therapists to support his continued learning, expand his Braille reading, and so he is an independent cane traveler. One of Karl’s favorite parts about the experience of filming “This Is Us” was meeting and spending time with his on-screen sister Hailey, played by 7-year-old actress Sophia Sawaya. He also liked hanging out in his trailer and “being with all of those famous people.” When asked who was his favorite of the actors on set, he said, “I can’t decide because all of them were fantastic.” His on-screen parents Chrissy Metz and Chris Geere always made him feel comfortable on set. Karl let us know that along with being an actor, he is many things – a piano player, a comedian (check out his joke of the day!), and a cane user. He also enjoys swimming, horseback riding, and singing with the John Mercer choir. He detailed his Perkins Brailler machine and abacus he uses for school, along with the different tips that can go on the end of his cane (marshmallow, ball, and pencil). He also loves spending time with his little sister Kirra, who he describes as “kind of messy.” As for what’s next for Karl, he recently got into the Academy of Music for the Blind, booked a commercial, and looks forward to doing more auditions. This summer, he is excited to show his sister how to swim with a dolphin (something he’s already done) along with hiking up a volcano in Hawaii. Karl, we can’t wait to see wherever your next adventure takes you!

    Community Voices

    I feel like I'm always angry regardless what anything good happens. Some people say they want me happy, but no matter how hard they try, I just feel always angry, I just feel always insufficient, I always feel helpless and powerless. I'm angry that I'm out of control over things in my life, I'm angry I can't keep up my studies because I lack money, I'm angry because I'm sick, because I'm blind, because I'm poor, and because I can't do good enough to people around me. I'm angry because I self sabotage. I'm angry at everything. I'm tired. And many times all I think is to give up and kill myself already.

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