Blindness

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    one of *those* days

    some days I wake up with confusion. The confusion of who? Who am I? Who is coconscious with me? How will I keep from what I call flicker switching where it's like a game of tag, one moment me, the next someone else, the next another person. It goes with being forgetful as hell, "what was I doing? Did I finish it? Did I leave anything out?" It can be useful, because if there's only one other person out with me and I'm grounded, they're grounded too, then we can focus. If it's flicker switching, we're in for a visit to the hell museum because focus is hard to maintain. Add to that the fibromyalgia stuff and whee! we're off to the races! I'm trying to laugh at it, especially because all of us inside find ways to laugh at our situation when we can. I'll give this example. This might freak some out, and it did me for a while. We had a stink bug in here. I could hear it, it would land on me sometimes. I went into panic, old helplessness uncovered. One of the others was asking me, "Hey, you're the scholar. What do they call these scientifically?" My answer "brown marmerated stink bugs." He said "ok we can work with that." I said, "um, what? How?" His answer was "well, let's se. We can hear it. We can't reliably get rid of it." Me: "yes, both are true." Him: "hi there marmerator" Every time we were in the same room with it, he would always call it "marmerator" Then he asked me "what the hell does ""marmerated" mean?" I had no answer. But it did make both of us laugh. Another example was when I was required to sign for my medicine to be delivered, and instead of, you know, ringing the bell or knocking, they just left an effing post it in my box saying, I'm guessing, some nonsense about needing to reschedule delivery because they had "missed" me, when really they were just too damned lazy to do their job. The other thing making this more frustrating was the fact that a couple months before, something similar had happened, so I went to the post office and signed something that was supposed to be a signature for packages, the people there told me that it was suppose to apply automatically to any package that needed one without me having to go online and sign using my electronic signature, or be there to sign in person. I was mad. I was on my last dose of this particular medicine. One of my other inside people just said "sometimes, you have to give the sighted world the finger and move on." Not sure why, but we both burst out laughing. He knows, being blind himself, that dealing with government organizations that regard you as a number, maybe a nuisance, can be really infuriating. In fact, we realized just recently that it's really triggering my cptsd because with abuse comes being objectified (is that a word?) and it was so subtle, with people working for these organizations not even trying to communicate. Sometimes DSS will send me letters, but they won't return my phone calls or voicemails, lose my paperwork, etc. It's just the name of the game. That doesn't mean it doesn't royally suck. But at least with some, I'm able to find humor in it. #DissociativeIdentityDisorder #CPTSD #Blindness #Anxiety

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    What I Want You To Know About The Person In The “Nice Parking Spot”

    It finally happened, I knew it was bound to sooner or later. I was verbally shamed for using my disability placard, right there in the parking lot for everybody to see!

    While I was loading my groceries into the car I heard a woman’s voice shout “Nice parking spot!” I looked up to see this lady staring very intently at me. And she did not break that stare even as she walked towards the entrance, as if she was trying to intimidate me. I looked back at her a bit shocked. It seemed to really bother her that I was parked there. Little does she know, the fact that I parked there bothers me too, every single day.

    Those three words combined with the look of disgust she gave me had me questioning myself all weekend. Do I really need to park there? Is losing sight in one eye really that hard? Should I have told her to f*ck right off? And the answer to all of those questions is yes! Yes, this is hard –  hard to live with, hard to be stared at for parking there and hard not to have given her a piece of my mind.

    Every time I use a disability parking spot, the questions start swirling around in my head. Before I even get out of the car, the anxiety kicks in and I move into defensive mode. Is that person staring at me? What if they say something? How am I going to react?

    Like this woman, many people are still unaware that invisible disabilities exist. With an estimated 20% of people living in the United States with an invisible disability, it is more common than people think. Invisible disabilities can consist of mental, cognitive and physical conditions that are not obvious to others. These conditions can greatly impair a person’s mobility, senses or affect their daily activities. For example #Blindness, mental illness, ADHD and chronic illness all fall under the umbrella of #InvisibleDisability. A person with an invisible disability may not require the use of an assistive device, making it appear as if they are totally fine. However, it is important to remember that we don’t see their private struggles and it’s not right to assume misconceptions about people without knowing anything about their situation.

    I owe nobody an explanation of why I park my car in the disability parking spot and I should not have to justify my reasons to some stranger. People like her fail to realize that I do not love this for myself. It takes a great amount of confidence for me to park there when I never wanted to qualify for it in the first place. This woman has no idea how hard it is for me to have the strength and pride to go out and do things that bring so much anxiety.

    Let this serve as a reminder that we should not judge a book by its cover. We can never really know what a person is dealing with just by observing them for a short period of time. I mulled over the decision to even ask for a disability placard. The reason I need one was and still is a tough pill to swallow. If you feel like you need to rudely speak your opinions to somebody that you know nothing about, just don’t.

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    when being in the dark feels safer than being in the light

    sometimes it feels like having no lights in the house on, going about doing things in the dark is safer because for someone who is blind plus abuse issues makes you feel like someone is always watching. Can anyone see in through the windows? Is there someone in here who is doing what mom and brothers used to do, where they would come into a room and wouldn't say anything? How much can a sighted person actually see? If I have the blinds down can they still see in? There are people outside on the sidewalk, can they see in? Would they care to look? So many questions. It's really a struggle to not go down this road, because my suspicious mind will take any of these and run with it. For blind people living alone, how do you keep yourselves safe? What do you do to make sure you are the only one in your apartment? I guess I should also mention that there were times over the summer when things needed to be fix and the maintenance guys didn't call, knock nothing. I woke up with some stranger opening my bedroom door and yelling my name. This really freaked me out because in one of those times I wasn't dressed. My therapist wrote to the complex and explained exactly why they needed to call and give notice before they came in and they didn't. Looking forward to the day I leave. #CPTSD #Blindness

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    vision problems and brain fog

    People with vision problems - do you have brain fog as a result? i'm partially blind in my right eye and that also causes it to be very light sensitive. when i have to look at a bright screen it's so disorienting it makes my mind all foggy. same thing for being under bright lights. people don't understand why i don't want to look at their computer screens (mine is inverted using the magnifier app so it is mostly black and easy on my eyes) or to be under their lights (the bulbs are removed from mine). when i try to think in a bright environment i get all "fogged up" and dont function like normal. i feel like people are judging me or making fun of me and they don't understand that i can't function well in this environment. i'm also so sick of having to think about it all the time and always be mindful of sunglasses, and worrying about what kind of light i will be exposed to outdoors and indoors. i am wondering if it would be possible to get a dark contact lens for the bad eye and maybe that would help. something like what axon optics makes. another thing is i have a lot of balance issues because of my bad eye and i'm always worrying i will trip or run into something. it's just so much mental energy this is taking up and so much anxiety it is causing. i've also been having trouble appreciating anything visual because there is so much anxiety around it, and i have to wear sunglasses all the time. i do think i can adjust to this. when i was a teenager i lost a small amount of my hearing suddenly and for no apparent reason. for a while i stopped being able to appreciate music but eventually it stopped bothering me completely and i loved music again and now i dont even notice there is a problem anymore. i'm lucky to still be able to drive and work and see all the things i can. this is nowhere near the worst case scenario. but i do feel like it is making me not function well and i also feel like i am being judged for doing things differently or when i do have a slip-up and also depressed and not enjoying life.#Blindness #BrainFog

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    Depressed

    So I have a visual disability. Kind of. It’s super mild. I can still drive, work, etc but I’m partially blind in one eye because of an injury years ago. That eye is also extremely light sensitive. I had gotten used to it and barely noticed it, and then in 2021 after having covid it started bothering me again.... a lot. Covid made me really dizzy and the eye problem affected my life more. I face planted a couple times and it was embarassing. Eventually the dizziness got better, but it made me hyper aware of my vision defect and now I can’t “tune it out” anymore. It’s gotten to where I simply don’t want to go anywhere because I’m afraid of noticing it. I just want to follow my routine all day and go to work and avoid lights, then go to sleep. I wear sunglasses inside more often than not but often it bothers me with them too. My friend keeps inviting me over and I won’t go. I need to go to the grocery store but I wont. All because I don’t want to notice that the picture that I see is not perfect. It seriously just drives me mad and it’s all I can focus on. Im also ashamed and embarrassed about people noticing. I’m tempted to look into tinted contact lenses for the light sensitivity, but idk. I hate asking doctors about stuff like that, as if I know more than they do. I just needed to vent. At some point I have to start living my life again. It’s been on pause for almost 2 years. I am not depressed by nature either. I just stopped doing things because I didn’t want to notice I have this flaw in my eyesight. And now i dug myself into a hole and I’m afraid to do everything. #Depression #Blindness

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    October is National Disability Employment Awareness Month. Don't Lose Your Next Great Hire!

    October is National Disability Employment Awareness Month. This is one of the most important months of the year for us in the disability community. Though I advocate year-round for employers of all sizes to hire from within the disability community, having a spotlight shined on the cause is critical.

    As someone who has worked as an entrepreneur, a government contractor and now as both a workforce development program manager and accessibility expert, I am the embodiment of what NDEAM is all about.

    Despite being ready for work, there are far too many disabled professionals on the sidelines. With the rise of remote/hybrid work, a plethora of assistive technologies, and more emphasis than ever on the value of a diverse workforce – companies should be moving faster than ever to hire across the disability spectrum.

    My particular experience focuses on blind and low-vision individuals, but what I see across the board is that many companies overthink what it takes to hire a disabled person. I tell my corporate clients: a simple conversation consisting of what that person needs to be successful in their role is usually all it takes to figure out the best setup for that individual. Disabled people are often reluctant to share their disability, due to fear it will impact their candidacy. But the truth is – disabled people, just like the able-bodied, apply for jobs that they believe they can do! By simply opening the door to the question of how, we find that more often than not, the answers are quite simple.

    My advice to disabled candidates is equally easy: go for it! Apply for the jobs you know you can succeed in. Be honest with potential employers about accessibility needs and explain how you will use these tools to fulfill the requirements of the role. Only through this transparency and conversation will we effect change.

    October is a great month to reset in general, but I encourage everyone – use the momentum of this month to take stock of your employment base. Ask yourself if you are truly looking at the widest candidate group possible. Use organizations like the one I work for, NSITE, to help you – we know what to do and can help get things moving quickly.

    The only thing you have to lose is your next best hire. #Disability #Blindness #RP #Blind #dei #disabilityatwork

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    A Miracle, A Solution… I am so happy! #Photophobia #VisualImpairment #Blindness #Migraines

    Update: A miracle has occurred sooner than expected! My new corrected tinted filter and filter cap for my glasses are in and am very grateful as insurance covered the cost. All I need to do now is get over this cold so I can pick them up! This is such a huge relief as I haven’t been able to go out in months without #Migraines , #Photophobia , eye pain, meaning I wasn’t really going out. And now I can be pain free very soon! Now I just need to advocate and figure out how to get the other custom pair that is for everything else that isn’t distance magnification or telescopic use covered!

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    Dealing with the Emotions of a Disability Diagnosis

    I gradually lost my sight over the course of a 12-year period, starting at just 18. This process was not without its emotion and challenges. Having been both an athlete and a scholar, I needed to reset the expectations I had for myself but what I also learned, sometimes the hard way, is I had to do the same for those around me.

    The diagnosis of any #Disability  affects the person at its center the most. However, those who love or care for that person also go through a range of emotions, including grief, anger, sadness, and anxiety. The first days, months, and years of processing a diagnosis can make for awkward and uncomfortable encounters between a person learning to navigate their new normal and the friends, family and caregivers doing the same alongside them.

    In the years since my own diagnosis of #RetinitisPigmentosa , I’ve mentored many and had conversations with even more on the emotions that follow learning you or someone you love has a disability. Through these conversations and my own journey, I can share three things that I know to be true when it comes to showing up for someone during this process.

    1) For those who have received a diagnosis, you have every right to the emotions that follow. Rage, grief, and shock are all normal parts of realizing the plan you had for your life will now be different. As difficult as it is, try to realize that people who care for you are also recognizing this at the same time. The hopes and ambitions they had for you are also shifting, which can lead to overcompensating in some areas, and underperforming in others. I have found this to be especially true in parent/child relationships. My advice is to try to have some sympathy by acknowledging their feelings and saying you will talk when you are ready about whatever the issue or problem bothering everyone most is. Sometimes that promise is enough to keep things from boiling over.

    2) For those who love someone coming to terms with a diagnosis, the most important things to give are respect and space. I was once at a conference where a father expressed his dismay that his daughter had not yet left her room to meet people with her same disability. I gently reminded him that if his daughter was there, but not yet ready to mingle, that was still progress. Instead of fretting that his daughter was not present, I recommended the dad take the time to meet people that may be worthwhile for his daughter to know when she was ready. Forcing timetables or tasks is a quick way to make a difficult time even harder for all involved.

    3) For caregivers, try to continue behaving as normally as possible. As I began to lose my sight, people were quick to trip over common phrases that they thought might offend me – like “Doug, did you watch the baseball game last night?” They’d quickly follow up by saying “I mean, listened. I’m so sorry. I know you can’t watch it. Did you listen to the game?” Now, I can laugh at it, but at one point, it made me feel even more isolated than I had already been feeling. From using colloquialisms to keeping normal traditions – let your friend or family member with the diagnosis set the tone rather than self-limiting.

    These hard-won lessons took decades to distill, understand and practice. This process is hard. But on the other side of this work are deeper loves and friendships than anyone would think possible – and from there, the second part of your life, not the one you planned but the one that is - can begin.

    #Blindness

    Question

    How do you handle being misgendered?

    My parents are very anti lgbtq+ and they've misgendered me ever since I came out to them last year. I have corrected it but it's like they don't care. Due to my blindness I can't move.

    Post

    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