Disability · Personal

My Disability & Things I Wish Everyone Knew

I want to go in depth about my vision impairment in case anyone is curious and would like to know more about my disability. I’m well aware that asking someone about their disability is not the most comfortable thing, so hopefully this helps and might shed some light on not only my life, but on the lives of others with disabilities or impairments. 

 I am very open about my vision and patient/comfortable with questions. I understand that invisible disabilities such as mine are incredibly difficult to understand, and I’d like for people to understand as much as possible. Typically the only questions I don’t respond so kindly to are: “how many fingers am I holding up?” and “do you realize how close you hold things to your face?”. 

My impairment is called Stargardt’s Disease and it is a rare, juvenile form of macular degeneration. About 1 in 20,000 people have it, so I am one of zero people I know personally with this disease. It’s a genetic mutation that typically kicks in around age 12(11 in my case) that causes holes to appear in the central vision. The confusing part is that I do not see these holes and my vision is never blurry. I promise I do not see the world through Swiss cheese holes. My best attempt to explain it is to compare it to how things look to regular-sighted people when they’re simply too far away to see clearly. 

My mind fills in these holes, so I subconsciously look around them. This is why it will often seem like I’m looking above you or to the side of you when I’m speaking directly fo you. Yes, I’m aware of it, and I’m sorry if you’re a stickler for eye contact. If I make eye contact, your face will disappear, so it’s not likely that I’ll gaze into your eyes often. 

My vision slowly deteriorated to 20/200(20/20 is perfect), which is legally “blind”. It should not worsen. I will not go completely blind. However, there is no treatment or correction. Glasses and contacts merely have the same effect on me as windex does on a window. 
I often think the disease sounds more severe than it truly is. Don’t get me wrong, I am considered severely disabled and it makes most things in life much more difficult, but I live as “normally” as possible. I am hindered most when trying to read. Signs, menus, papers, books, and electronics give me the most difficulty. 

As “normally” as I try to live, I am undoubtedly different in many ways than most people. I’ve had to learn to adapt and live with just a fraction of a main sense for the second half of my life. I’m certain I miss social cues, facial expressions, and many other things of which I’m unaware; therefore I’m a rather intuitive and empathetic person. Thankfully, I was gifted with the ability to understand, communicate with and read people very well. Clearly my vision does not hinder my ability to be modest. 

Now, here’s my little FAQ and “Things I Wish Everyone Knew” section:

1) Can you drive? Legally, yes. I had a pair of biopic lenses(glasses with a telescope bar connected) that allowed me to pinpoint certain things quickly enough to be able to drive. However, I was involved in a very bad accident where my car caught on fire, so my glasses became ash and I’ve since decided I feel safer not driving. I never felt incredibly comfortable anyway. 

2) How can you see technology? Pixels on computers do not work for me, but iPads and iPhones are different. They’re clearer and I can hold them as close as I’d like and in front of the best parts of my eyes. I can enlarge them by hand and scan things perfectly. The text can also be enlarged greatly.

3) How come you don’t seem that blind? I am not making it up. I’ve lived this way for so long that I don’t feel like I am impaired. I am not fully blind, so most times I feel just like everyone else. I’ve learned to live with it to the point where it is very undetectable.

4) Do you dream with full sight? I highly doubt it. I feel like it would be pretty noticeable if I did. 

~Things I Wish Everyone Knew~

1) I often introduce myself as a visually impaired person, but I do this only so you know immediately. I despise being defined by my disability, as it is only part of who I am, and a very unpleasant part at that. It is not WHO I am. I am not “that blind girl”. 

2) Identifying yourself when you’re speaking to me from a distance is incredibly helpful. It’s also helpful in these situations to let me know that you’re speaking to me and not the person beside me. I’m not ignoring you, I just can’t tell that you’re looking at me unless you’re pretty close to me. 

3) You’re basically, and innocently, slapping me in the face by saying “I get it, I’m so blind without my glasses/contacts”. 

4) I want to be treated equally but also considerately. Empathy and pity are too often confused, and reluctance to offend can often be misconstrued as indifference to or even dismissal of my condition. 

5) No two visually impaired people experience the same difficulties. 

6) I understand it’s bewildering sometimes to learn that I can’t see a specific thing, but sometimes that bewilderment makes me feel like an alien. 

7) I’d much rather be asked questions than be avoided. 

8) “What exactly do you see?” is as easy to answer as “what is the meaning of life?”. 

9) Yes, I get really down sometimes. It can feel very isolating to be impaired. I come across like I handle it amazingly well, but I don’t always handle it well at all and it’s okay. 

10) Bad and good vision days are a very real thing. 

11) Jokes are good in moderation and I’m sorry, but I’m always allowed to joke about it more than you are. 

12) I am super understanding about others in regard to my vision, but it can be exhausting to always feel like the more understanding person. 

 There’s so much more I could say, but I won’t flatter myself by pretending everyone cares overly much about my situation. Hopefully this benefits someone in some way or appeases any curiosity. 

Disability · Personal · Rants

“You don’t know how lucky you are…”

I’m beyond tired of seeing people tweet things with the intention of making others feel guilty or spoiled for having things they themselves do not have. I constantly see hateful tweets about people whose parents have money, people who are naturally attractive, people whose parents are not divorced, people that get to go on vacation often, etc. I totally understand jealousy and agitation towards people whom of which I think live easier lives than I do, however, I have no tolerance or respect for people when they stoop low enough to make others feel guilt for things that are out of their control. I find it very similar to the concept of me constantly tweeting things like: “you don’t know how lucky you are to have full sight”, which I would never do. For the most part, I’m happy for others that don’t face the same hardships I do; people have enough to deal with as it is without us wishing worse lives upon them. 

I feel a spike of anger every time I see a tweet like this even if I sometimes feel similarly to the people tweeting. It’s important to remember that nobody knows everything that goes on in the lives of others. We might see how “wonderful” other’s lives are through social media, which make sense because people don’t post as often about the negatives in their lives. When using common sense, one can conclude that no one lives a perfect life and no one documents every good and bad thing that happens to them for the public to observe. So why tweet hatefully about people whose lives about which we’re ignorant?

Frankly, it infuriates me when anyone says “you don’t know how lucky you are…” or “I wish I had your problems”. Those are jealous and condescending statements that seem to be used here recently as forms of indirectly attacking people on social media. Some of these statemeets end up with thousands of retweets, which undoubtedly leads to people feeling attacked and guilty. I do not support diminishing anyone’s problems, especially to focus on your own like they’re more significant. It’s pathetic and deplorable in my opinion. I recently saw a tweet saying people don’t know how lucky they are to have married parents. On the contrary,  I think I’m very fortunate to have married parents. I think about it often. Now, on the other hand, think of people whose parents are only staying together because they think it’s best for the child yet are constantly fighting in front of their child. In my opinion, it’s not always best for a child to have married parents if those parents are miserable together and causing tension in the household.  Someone could have married parents that are abusive, hostile, into drugs and other criminal activities, or worse. I’m not naive; I know divorces are devastating. I can’t speak from experience on this matter, but I know having divorced parents can be both good and bad. What I can speak about is that no one holds the right to be the judge over everyone and say who is lucky and who isn’t. Personally, it feels Ike I’m almost being attacked out of nowhere by someone I don’t know(and the thousands that have retweeted these tweets) because I have married parents, and I have absolutely nothing to say to defend myself. I also feel uncomfortable beecause I didn’t know I needed to defend myself because my parents aren’t divorced. As I said, I’m incredibly grateful that my parents are still together and being told I’m unappreciative by someone that doesn’t know me at all puts me on the defensive, as I’m sure it does to many others. If you’re trying to spread awareness about what divorce can do to people, you’ll gain a lot more support by not bringing others down, by not causing people to go on the defensive. 

People also seem to hold a lot of resentment towards people whose parents have money. To start, I’d like to say that kids have zero control over how much money their families have earned. Yes, it is aggravating when someone just inherits money and comes off spoiled and selfish because of it, but it’s a gross generalization to assume all wealthy people are this way. Some people come from very little and  work their asses off to get where they are only to receive hatred, only to have their children receive hatred for having money. Some people have legal settlements that came from horrible events like murder, negligence, reckless endangerment, etc. Some people simply win the lottery, others receive money when their loved ones die, others don’t get to spend time with their parents because they’re so focused on earning money. I see the most tweets about how nice it must be to get money from your parents, to get enough money to not have to work, to go on vacations all the time. I’ll admit that I’ve been jealous of the lavish vacations people take, the nice clothing people wear, the amount of shopping people do, and so on. However, I prefer to not be a horribly negative person , so I don’t blame these people or tell them they’re so lucky and unappreciative. I don’t respect people that try to make others feel bad by acting like their lives are so much worse. Everyone faces hardships!!! Don’t act superior and condescending by telling another person they don’t know how good they have it. 

Life includes ups and downs for everyone. Someone could be wealthy and beautiful but bipolar. Someone could have a lot of money from a lawsuit but also be permanently disabled. Some people might travel the world and also be rape survivors. Some people are raised by wealthy parents and very lonely because jealousy keeps friends away. Who the hell has the audacity to think they are the judge of anyone, who gets to say whose lives are better than others?!

There are privileged, ungrateful people in this world. There are also rapists, murderers, liars, theifs, and narcissists. Where would we be if we always assumed the worst from everyone? How impractical a notion is that? Instead of assuming we know things about others, judging them from afar, and making them feel attacked by thoughtless generalizations, why don’t we support others and fight to stop spreading hate? It saddens me to see people losing empathy more and more; it seems as if very few people today care to understand others. Compassion should be felt towards more than ourselves and wealth. I feel that it’s so much more important and beneficial to all if we focus less on how “amazing” others seem to have it and focus more on living happy lives ourselves. Happiness does not often include assumptions and envy. 

Disability · Personal · Politics

Trump… “care”

I’m currently shaking out of anger. It’s well known that I’m a “flaming liberal” as some so respectfully call me, so you can imagine where I’m going with this. If you are triggered by us “flaming liberal” types and if you cannot read opposing thoughts without closing off your rationality and respectfulness, I ask you, politely, to move on. 

As we know, the House of Representatives has passed the American Health Care Act and we’re now awaiting the Senate’s approval or disapproval. I’m absolutely sick over this entire thing. First, I’ll admit that the Affordable Care Act was not perfect. Honestly, what can be perfect today? I saw people complaining and moaning about how their insurance was going up and it was less spectacular than it used to be, and to that I thought: good to know you’re more concerned about yourself, that you’re worked up about slightly less coverage for you in order for others to have any coverage at all. Call me crazy, but I’d rather have to pay a little more if that means everyone gets some kind of healthcare. I guess it’s too much to ask that we care more about people than money. I think people easily forgot that their insurance is most likely still better than what it is for those receiving government healthcare. 

I could go on endlessly about every infuriating aspect of this callous bill, but I’d like to move on to something that everyone can care about since that’s the only time some people will be angered: when it actually seems unfair to them. So, I present to you the pre-existing conditions part of Trump’s bill. 

Ive read multiple different articles and seen a copious amount of pictures and lists and so on, and what I’ve gathered is that the AHCA still “favors” the requirement set by the ACA regarding pre-existing conditions: insurers cannot deny benefits to those with pre-existing conditions. However, with the AHCA, insurers sure can drive up the prices and decrease the amount of coverage for those of us unfortunate enough to have contracted or been born with a disease/disorder. With that, states will be allowed waivers that will then allow insurers to sell plans that exclude benefits to those with pre-existing conditions. 

In a nutshell, the Trump”care” act does not guarantee affordable care or any health insurance at all to those of us with certain diseases, disorders, or conditions. No matter your political affiliation, you’re susceptible to ailments. Thus, everyone is impacted by this. 

List of pre-existing conditions that could cause premium spikes or may not be covered:

  • Acne
  • Asthma
  • Cancer
  • Pregnancy
  • Menstral irregularities
  • Transsexuality
  • Bipolar Disorder
  • Depression
  • AIDS
  • Hepatitis
  • Anemia
  • Muscular Distrophy
  • Anxiety
  • Alzheimer’s
  • Diabetes
  • Obesity
  • Organ transplants
  • Macular degeneration 
  • Schizophrenia
  • Sleep apnea
  • Sex reassignment
  • Cystic Fibrosis
  • Alcolholism/Drug addiction
  • Sickle Cell Anemia
  • Tuberculosis

And the list goes on. In case you think I’m blowing smoke uo your ass, here are links to other lists and more information:

Here is a link to Trump’s actual site explaining and reiterating over and over that Republicans aren’t against supporting those with medical conditions. The link also includes that states will have the ability to seek waivers allowing insurers to deny benefits and raise premiums. The writers of the page express again that Republicans don’t wish to eliminate benefits to those with conditions, they merely explain why companies began denying and up-charging in the first place. It’s up to you to decide whether or not this explaination is excusing or justifying the unfairness. 


Let’s get into this unfairness, shall we? 

  1. Since I’ve hilariously been called “sexist against men”, let’s start off with women. To be charged extra or denied coverage due to menstral irregularities and pregnancy is simply to be punished for being a female. Would you like to know some causes of irregularities in periods? Adolescence, exercise, diet, stress, family history, medications, etc. Also, PREGNANCY?! Punishment for procreating, premarital sex, or maybe just a means to solve overpopulation? Yeah, those statements might seem ridiculous, but I promise you they’re on par with the ridiculousness of insurers considering pregnancy. Also, sorry gentlemen, but this matters for you as well if you’re going to be marrying a female and/or having a child with one. And you better hope that you have a boy if you do have a child because that girl would possibly have menstral irregularities some day! 
  2. The act seems punitive to our LGBT community as well. Like they need more inequalities. Correct me if I’m wrong, but transsexuality is in no way as expensive a “condition” as something like cancer. To me, this is not a pre-existing medical condition! Sex reassignment could be considered if a person is receiving procedures and medications, but it, along with transsexuality, seem to be included simply to allow for discrimination. With this, AIDS is so often linked to homosexuality, so it’s no surprise that it’s included on the lists. 
  3. Mental illness. No surprise there either, as these people are so often viewed as “weak-minded”. Depression and anxiety are  not widely understood as the life-altering disorders that they are but as made-up conditions for people who can’t “deal with reality”, “shake off sadness”, “get over nervousness”, or “deal like everyone else”. Also, the mindset of “why should insurers have to help pay for the “psychos” with bipolar disorder, schizophrenia, psychotic disorders, and more?” runs rampant in society. It’s so easy to disregard that mental illnesses often appear in people due to genetics and trauma. So yeah, let’s punish people with horrible healthcare for their conditions that were caused by abuse, rape, endangerment, neglect, and injury! 
  4. Cancer, cystic fibrosis, and organ transplants. This one will really rile people up because, unlike mental illnesses, they’re lucid. People can see the damage these diseases are doing to their sufferers, so they’re actually considered real and important like all severe diseases/disorders should be. So how could something as horrible as cancer make insurers turn their noses up? Well, these diseases are expensive, they have higher death rates, and  little to no cure. So somehow, this makes the money aspect more important than human life. Organ transplants are rare, difficult and extremely costly. Insurers know that someone who needed one in the past could really cost them a lot of money just like cancer patients can. 
  5. Obesity, addiction, and diabetes. Again, this is putative. Often, these conditions are viewed as self-caused, so of course they’re going to be considered as burdens in the healthcare world. We love to blame people for their own issues instead of trying to understand them, so it’s easy to justify that people should have to pay more if they can’t stop eating or abusing substances. 
  6. Sickle cell anemia and tuberculosis. These are just more examples of structured discrimination as Sickle Cell Anemia is present mostly in non-white people and TB kills mostly Natuve Americans. 

To paint a decent picture, I’m going to make this personal and explain how this could negatively affect me and others like me. I am visually impaired and diagnosed with both ADD and Major Depression. To clarify, I will be stating facts, not fishing for sympathy and pity. I am not pitying myself, I am simply pointing out my reality and how it differs from those that do not have the disorders I have. 

My visual impairment affects only 25-34,000 US citizens, causes legal blindness, and has no cure or treatment. Yes, that includes glasses and contacts. As you can imagine-kind of, our lives are pretty different than your full-sighted person’s. Our lives are also very different than the lives of fully-blind people because we walk a very misunderstood line between sighted and not. My disease is much more frequently used as joke material than it is understood; it’s not easy to comprehend a disability that is physically undetectable,e. For me, life includes: inability to see computer screens, menus, street signs, physical books, newspapers, important forms and documents, magazines, white boards and smart boards at school, people at a distanc, my own toenails, my weight on a scale, instructions on food, products, etc.; inability to participate in most sports, card games, ping pong, frisbee throwing, bike riding, art,  scuba diving, and so on; inability to be a server, pilot, doctor, surgeon, nurse, engineer, clerk, police officer, military solider, firefighter…you get the point. Only you don’t. Because I’m still slapped in the face all the time by yet another thing I’m unable to do. In order to do things that are simple to most, I have to jump hurdles and test different forms of assistance. 

Simply figuring out how to makes things even doable-not easy, is a constant struggle. Getting a job often seems impossible because, not only is it difficult to find a job that I could do, it is no secret to me that employers would prefer fully able employees. Truly, it’s hard to even know my rights as a disabled person, so imagine the difficulties I have when they’re violated. Yes, I’ve been bullied brutally. Yes, I feel misunderstood at times and insanely alone other times. Yes, I sometimes feel worthless and less human. I hate depending on everyone. I feel like a burden. I feel like people look down on me, view me as pathetic. Micro-aggressions are very real and I face them daily. My life would be a constant humiliation if I let it be and finally, yes, my disability was a major contributor to my depression. Do I always experience those things? Of course not, but a lifetime of of those on-and-off feelings and experiences takess it’s toll. It does for everyone with any kind of disorder that makes their life more difficult. 

My vision is my cancer, my missing limb, my seemingly fatal condition. An abundance of people, especially those with Trump’s pre-existing conditions , have their own cancer. Their condition has the ability to ruin their lives, whether it is considered significant or not by others. Some might say it’s absolutely ridiculous to compare a vision impairment or a mental illness to cancer, but if you truly attempt to understand, you’ll see that “simple” conditions can lead to major ones and can take your life from you or cause you to take your own. 

People who can’t easily get a job are never going to have an equal opportunity to get superb insurance, nor are they going to make enough money to afford a life with no insurance or higher prices! People with fatal diseases cannot work to earn money to pay for their expenses or support their families.