Grace Robinson

Since September is Mitochondrial Disease Awareness Month, I thought this would be the perfect opportunity to share with you some of the thoughts and opinions of the mitochondrial disease community. To accurately represent the struggles and realities the mito community faces, I decided to ask members of the mitochondrial disease community to participate in a nine-question survey about their lives with mito. Here are some of the answers: 1. What is living with mitochondrial disease really like? “It’s a full-time job. There isn’t a time of the day where I cannot be sick. You don’t ever get better, you just have different severity of symptoms depending on energy levels. It can be physically and mentally exhausting. It’s very isolating in the medical community because no one knows anything about it.” — Emilee C. “Lots of unknowns.” — Alexis K. “It sucks… OK, but really, it’s incredibly frustrating. I haven’t been able to walk, move, or even breathe on my own since I was 3. Not being able to move on my own has also weakened my bones and I’m always afraid of being injured or fractured (it’s happened quite a few times). Having to use a ventilator 24/7 has its challenges as well.” — Connie M. “Tiring and complex.” — Emilie T. “It’s not fun. I have a lot of insecurities about my body and struggles with self-confidence. I think that the hardest part of living with mito for me is that I feel like I never fit in anywhere. I’m a college senior and I look healthy but have to go to all these doctors’ appointments and I wear hearing aids and glasses. My sister passed away from lack of energy from mito five years ago. It’s just tough finding my place where people will accept me even though I don’t drink or party.” –Katherine C. “Mito affects every single thing I do daily. Mito is exhausting mentally and physically. It is stressful always trying to get help. It is central lines, feeding tube formula, wheelchair.” –Kristina K. 2. Are you afraid that people will judge you because of your illness/disability? “Yes, absolutely.” –Emily S. “Hell no, they can kiss my a**.” –Nate W. “Yes, I have already been judged multiple times because of it.” –Kailee P. “Yes. I’m always afraid of pity and feeling like a burden. I hate having to ask for help but it’s my cross to bear.” –Emilee C. “Yes, I run IV fluids daily and the looks I get from people are depressing.” –Kristina K. 3. What is something people often say/ask you about mitochondrial disease that you wish they wouldn’t? “It could be worse.” –Alexis K. “You’re exaggerating. You are a hypochondriac.” –Samantha P. “Can she talk?” –Emilie T. “Feel better” –Tayla R. “Are you better yet?” “Are you still sick?” “I wish I had the problem of not wanting to eat.” –Emilee C. “Everything is in your head and mito isn’t real.” –Kailee P. 4. What are some ways you feel limited by mitochondrial disease? “I feel limited pretty much in every way physically. I feel limited socially as well, I think. A lot of people just see the disability and don’t really see the person behind that, so it’s just difficult at times to interact with others and make friends.” –Connie M. “I feel limited by the fatigue, it’s exhausting. I also feel limited by my body and I hate having to be so careful so I don’t hurt the next day.” –Emily S. “Not being as physically able to do things as others my age.” –Samantha P. “It’s hard to travel alone with all the liquid and powder medicines I take. I hate that people think I’m a normal adult who can drink and go party. I feel like I’m limited by how much I can do in a day. It sounds cheesy and relatable to mito patients but I want to be like other college grads who get full-time jobs and date and get married. There are just some things I don’t think I have energy for, like my internship is already exhausting from home.” –Katherine C. “Not being able to drive.” –Nate W. “Limited quality of life, limited funds, energy, spoons.” –Tayla R. “I feel limited in everything I do.” –Madison G. 5. What symptom of mitochondrial disease affects your life the most? “GI or motility.” –Alexis K. “High and low blood sugars from diabetes.” –Emilie T. “Having seizures.” –Nate W. “The fatigue, especially the brain fog. I naturally am a talk fast, think fast, walk fast, type of person — except some days I can’t even process what others are saying to me and I feel exhausted walking across a house.” –Devin S. “I think it’s the muscle weakness.” –Kailee P. “Migraines and ataxia.” –Madison G. 6. Are you comfortable openly talking about your illness/disability? “Yes and no.” –Emily S. “I am when people are open-minded.” –Kailee P. “Yes, for the most part.” –Madison G. “Yes, I am now, but I still get anxiety when I’m the center of attention about it.” –Emilee C. “Yes, most of the time but it can depend on the person I’m talking about it to.” –Kristina K. 7. What is the hardest part about having mitochondrial disease? “Feeling like I’ve been erased, like people don’t see me or who I am. Having to trust others with every aspect of my daily life, health, and overall life. Being abused by people who took advantage of that.” –Connie M. “People don’t know what it is, and I have to explain it. Also, I don’t have a genetic diagnosis, just a clinical one, which makes it harder to know what treatment to use.” –Emilie T. “Being isolated and having friends fall away.” –Samantha P. “Accepting grief and coping with it.” –Katherine C. “Not being able to live a normal life like everyone else.” –Nate W. “Having no support outside of friends. No one seems to care or support us since it’s chronic.” –Tayla R. “Watching those I love with it (sibling and friends) suffer with it. Knowing that we can’t predict our futures so at any point it could dramatically go downhill. But friends are also the best part of mito as well and I wouldn’t trade them for the world.” –Devin S. 8. What do people not know/get wrong about your illness/disability? “How difficult pain can be some days.” –Alexis K. “How much it affects my everyday life.” –Samantha P. “That I can look good or seem OK and that means I’m not in pain or feeling pretty horrible. It’s easy to fake it some days and so many assume I’m less affected than I am.” –Devin S. “Most people don’t know that everyone is different.” –Madison G. “I work so hard just to do the bare minimum and it still doesn’t feel like enough.” –Emilee C. “People don’t understand that my diseases fluctuate from one day to the next. Some days are good but others are bad. I can do something one day and the next day I can’t do it.” –Kristina K. 9. What is something you wish people knew about mitochondrial disease? “It’s not a ‘one size fits all’ situation and having it doesn’t take away your right to live your life.” –Connie M. “That just because you can’t see it, doesn’t mean it’s not real. Also realizing how much mito affects our lives.” –Emily S. “I wish that people knew the different ranges of how badly it can affect a person. I hope that makes sense. My sister couldn’t walk or talk or eat, but I can do all of those things and I seem like a normal college kid. But no one knows that I’m struggling with my mito symptoms till I tell them.” –Katherine C. “We can all look totally different and have different symptoms but can still be valid.” –Tayla R. “That we’re not asking for pity, that we aren’t your inspiration, and that this is our norm so please don’t project your feelings/worries onto us.” –Devin S.

September is Mitochondrial Disease Awareness Month and you might find yourself wondering “What exactly is mitochondrial disease and what can I do to help?” If you are one of those people, don’t worry, I am here to help! Mitochondrial diseases are a group of genetic disorders that occur when the mitochondria (the part of the cell responsible for producing 90% of the energy needed to sustain life) fail to produce enough energy for the cell to function properly. This causes cell injury, and eventually cell death. Since mitochondria are found in every cell in the body (with the exception of red blood cells), mitochondrial disorders cause a wide range of symptoms. This often sends mito patients on a long and complex diagnostic odyssey while desperately struggling to manage their symptoms. Mitochondrial diseases are progressive and there is currently no cure. Mitochondrial disease awareness is so important because we need better treatments! The first mitochondrial disease was only discovered in 1988, so mitochondrial medicine is still a relatively new field. Research is expensive and rare diseases do not get the funding they truly need. Another reason we need awareness is that it’s far too common for mitochondrial disease patients to not receive proper care, despite desperately needing it. It often takes years to be correctly diagnosed with mitochondrial disease, and when finally diagnosed, we often struggle to find physicians that know how to treat us. We need awareness because we shouldn’t have to travel 100+ miles for proper treatment! Here are five ways you can make a difference this Mitochondrial Disease Awareness Month: 1. Wear a green ribbon. It is a really simple way to bring awareness to a cause, but it works! When I wear my green ribbon during awareness month, tons of people always ask me about it. Also, know how to pronounce Mitochondrial Disease when people ask. Rocking a ribbon only brings awareness if you can actually pronounce the name of the disease it represents! 2. Educate yourself on mitochondrial disease. Some great resources to learn about mitochondrial disease include the UMDF and Mito Action. 3. Donate to a mitochondrial disease organization. Some great foundations to donate to include UMDF, Mito Action, and The Lily Foundation (UK). I have been volunteering with the UMDF for almost five years now as a support ambassador, so I might be a little biased. The support group communities the UMDF provides have touched me in ways I can’t put into words and the educational events they run have helped me to better understand the disease I live with. The UMDF mission is to “Promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.” I believe the UMDF is doing an amazing job fulfilling that mission 4. Share Mitochondrial Disease Awareness posts on social media. I know that seeing a ton of awareness posts can become overwhelming, but social media posts really do go a long way when it comes to awareness. Make sure to share quality posts with reliable information, not just pictures of green ribbons! 5. Host a fundraiser / participate in an Energy for Life Walk. Celebrate Mitochondrial Disease Awareness Month by creating a Facebook fundraiser for any of the foundations mentioned above or put together an Energy for Life Walk team and help the UMDF fund much-needed research. Let’s make this Mitochondrial Disease Awareness Month a great one!

July is Disability Pride Month, a time to celebrate all things disability-related! For hundreds of years, disabilities were considered shameful and something to hide, and although we have come a long way, the disabled community is still often neglected and misunderstood. Here are 10 things I want you to know about my experience as a disabled woman. 1. No, I can’t meet you halfway. I am not sure why, but able-bodied people tend to have this idea in their heads that if disabled people push themselves hard enough, they can perform a certain task. That isn’t how disabilities work. We know what our bodies are capable and incapable of. When we tell you we can’t do something, please just listen to us. Don’t follow up by asking us to try anyway. 2. I am disabled, not a child. I find that people tend to treat me like a child because I’m a wheelchair user. I notice that when I’m out to eat, servers always just ask whoever I’m with what I want to order. They just assume that I can’t order for myself and are often shocked when I do order. Another thing that happens is that people like to pat me on the head. It’s really weird and I don’t get why people think it’s appropriate. 3. Disability is not a bad word. Let’s talk about disabilities. Society often still sees people with disabilities as less-than or broken and that needs to change. Talking about disabilities should be normal because *gasp* disabilities are normal. There shouldn’t be any shame associated with the word “disabled.” And yes, it is disabled, not differently-abled! 4. I don’t need your sympathy, I need your acceptance. I get so much pity from people and it’s not helpful at all. I don’t want you to feel bad for me, I want you to understand where I’m coming from. 5. Stop calling disabled people “inspiring” for merely existing. It happens all the time. I have been called inspiring for the most basic things like braiding my hair, going out with my family/friends, cooking a very basic meal. None of those things are inspiring in the least. 6. I can see you staring at me. I’m not sure why, but grown adults stare at me all the time. I get that you might not be used to seeing someone in a wheelchair hooked up to IVs and a feeding tube, but blatantly staring is rude. If you are going to look at my medical equipment, do it subtly. It’s honestly not that hard. 7. Stop acting like you have the right to ask me anything you want about my disability. Strangers will straight up ask you super personal questions pertaining to your disability in public places and have the audacity to act as if you owe them an answer. It is perplexing. And please, stop asking “What’s wrong with you?” I know you mean no harm, but c’mon, it’s really offensive wording. 8. Help me with the door! Most public places don’t have automatic doors, so entering buildings/rooms can be difficult when dealing with a door and a mobility aid. I often find myself stuck in a doorway with a heavy door closing on me while the people around me just watch me struggle. People probably only offer to help me with the door around 50% of the time. 9. We are not “lucky” to receive basic accommodations. Stop acting like wheelchair users should be grateful for every dilapidated ramp that is definitely not up to code. I have a right to be upset if your ramp is dangerous to use. I shouldn’t “just be grateful that you even have a ramp.” It’s the law. 10. There is no representation. I rarely see anyone that looks like me in the media. TV shows seldomly have disabled characters, and when they do, it’s usually some super dramatic storyline. I want to see more people with disabilities in everyday roles. According to the CDC, 26% of Americans have a disability and it’s time to start acting like it.

Voting has been a hot topic over the past few months. I would like to take this opportunity to shed light on the disabled vote and the challenges the disabled community faces when it comes to casting our ballots. Disabled voters deal with a blatant lack of accessibility when it comes to voting either in-person or by absentee ballot, and although the lack of accessibility is unacceptable, it is still the reality many disabled voters face today. Due to the lack of accessibility, people with disabilities vote at a lower rate than the able-bodied community, with the disabled voter participation rate consistently going down over the last three presidential elections. Today, only 40% of polling places accommodate people with disabilities. As crazy as it may seem, it was only in the year 2000 that polling locations were required to have at least one accessible voting machine. Up until that point, only 16% of polling locations were accessible and the disabled community was often left out of politics. They were considered second-class citizens. Although accessibility for disabled voters has come a long way over the last 20 years, we are still far from where we need to be. In 2016, an inspection was done by the Government Accountability Office and nearly 2/3rds of the inspected polling places had at least one impediment to the disabled community. Although that is an improvement from the inspection done in 2008, it still isn’t enough. Some of the most common violations include the accessible voting machine not being set up or turned on, the polling location not being wheelchair accessible, or there being a lack of privacy for disabled voters while they cast their votes. Today, over 35 million voting-age Americans (1 out of every 5 people) have a disability with 1/3rd of disabled voters having trouble casting their ballots. Some common issues disabled voters experience when hitting the polls are doors not being wide enough to accommodate extra-wide or motorized wheelchairs, buildings having unusable ramps due to them falling into disrepair or being too steep, pathways being obstructed, polling locations lacking sufficient accessible parking, and doors being locked and elevators broken. Also, the disabled community is less likely to drive and many places across the USA do not have accessible public transportation to take disabled voters to the polls. This brings a whole other set of issues caused by mail-in and absentee voting. Although voting by mail is a great option for many people with disabilities, myself included, it is not a viable option for many people with a wide range of disabilities. Many disabilities make it impossible to mark a paper ballot, forcing these voters to physically go to the polls or not vote. Some people choose to give up their legal right to a secret ballot and rely on someone else to fill out their ballot for them, however, you have to trust that they are actually marking the candidate of your choosing and putting the ballot in the mail for you. That is why many disabled voters choose to hit the polls, but unfortunately, if the polling location isn’t accessible, their vote is not heard. This year, when 43 states that added an accessible electronic absentee voting option were investigated, the PDF applications on all 43 states’ websites had at least one issue that made the application incompatible with assistive technology such as screen readers. Overall, the states’ websites averaged 10 accessibility issues per application. Because of this, some people could not even complete the application for accessible electronic absentee voting, let alone cast their votes. Having an election in the midst of a global health crisis also brings a unique set of issues the disabled community never anticipated. People will have to risk their health by waiting in crowded lines, use voting machines that have been touched by many others, and vote in poorly ventilated buildings with people who haven’t been taking any precautions in regards to COVID-19, all in order to vote. Disabled voters already face many barriers during the voting process, and this pandemic is just the icing on the cake. Now more than ever, disabled voters need to vote because of hot button issues that directly impact their lives, one example being the future of healthcare in America. The system is failing the disabled community once again and we need America to start caring. We need voting to be accessible to all disabled Americans.

Dating in general is hard, but it is often especially difficult for those with disabilities. When you are disabled and disclose your disability, it is often too much for people to handle. Although many disabled people do have luck when it comes to dating someone who is able-bodied, many resort to dating platforms specifically geared towards the disabled community. I’ve had a few friends try these disabled dating websites, and from what I gathered, it was a disaster. In the past, these websites have been notoriously overrun by people with various disability fetishes and I am wondering if the people running these platforms have finally put an end to it. Quarantine has given me a little cabin fever, so I decided it was the perfect time for an experiment! I signed up for five different online dating platforms specifically for the disabled community. As soon as I had finished setting up my profiles, I started to receive messages from men between the ages of 40-84. Let me remind you, I am 25 years old! I couldn’t figure out why I kept matching with old men since my preference was set to 22-30 years old. As it turns out, these men who are obviously 50+ years old lied about their age on their profiles, claiming to be in their 20s, all so they would match with younger women. How creepy is that? Some of these men are old enough to be my grandfather! The biggest issues I have encountered are that there aren’t many young people utilizing these dating platforms and that people’s true ages aren’t being verified. Most people do not want to be hit on and harassed by men twice their age or older, and I’m sure it is a big deterrent when it comes to young people using these dating platforms. A little over 60% of all the messages I received across all five online dating platforms I tried were from men 55+ years old. It honestly felt degrading. I kept the dating profiles open for a week while I played around with the features and tried to have some conversation with the various age-appropriate men who messaged me. Although there are a few cool young people using these platforms, it was an overall disappointing experience and not an option I would ever seriously consider. After everything that happened with the disability dating platforms, I decided to try to get an accurate depiction of what dating is like for wheelchair users on mainstream platforms. I decided to create Hinge and Tinder accounts and match with every man within certain criteria. I was very surprised by how many different ways the wheelchair conversation would go, but even more so pleasantly surprised by the number of men who handled the wheelchair conversation really well. However, many men did disappoint by doing the exact opposite of what they should have. I kid you not, some men had the audacity to start the conversation with “I’ve never been with anyone in a wheelchair before!” In case you didn’t already know, that is an extremely fu****-up way to start a conversation with a wheelchair user! Some men went for it and asked me about my wheelchair right away, while others waited until a few messages in. I often found that it was brought up after the whole “what are your interests” spiel. Surprisingly, a lot of men never even asked me about my wheelchair. Some men asked me how I ended up in a wheelchair, while others only asked me whether I was paralyzed or could move. Some only asked about how my wheelchair pertains to my sex life. Again, that is not an appropriate question to ask anyone, let alone someone who is essentially a stranger! Some conversations naturally fizzled out, while I had to end others because it was time to cut them off. Overall, I have to say I was pleasantly surprised by how well many men on Hinge and Tinder handled the wheelchair conversation. The results were honestly much better than I expected. Even more so, I was relieved that very few men on mainstream dating platforms singled me out specifically because of my wheelchair. My experiences with these two different categories of dating platforms were night and day. I honestly feel like I didn’t encounter many men with wheelchair fetishes on the mainstream dating apps because these men are specifically utilizing the platforms geared towards the disabled community. It makes sense; if they are looking for someone with a disability, you go where the people with disabilities go. And although this is happening, it isn’t OK and I really hope that this issue is resolved in the future. It’s hard enough dating while disabled, so when dating platforms for people with disabilities are created, they shouldn’t be more degrading than mainstream dating platforms. We need the problems we encounter while dating resolved, not amplified. A longer and more detailed version of this story is published on my blog at https://www.graceandmito.com/post/dating-while-disabled

As a 25-year-old woman who uses a wheelchair, there is something about a wheelchair fetish that just doesn’t sit right with me. I’ve encountered men with this particular fetish at bars, public events, drugstores, etc. and every single time, I feel unsafe. I have been cornered and unable to get away, all while being asked extremely personal and inappropriate questions about my life and disability. Every time I encounter a man with a wheelchair fetish, I get a strong gut feeling that they want someone they can control, someone who can’t run away from them. To me, this behavior is extremely threatening and predatory. I usually love my wheelchair because it empowers me every single day, essentially acting as my legs. Don’t get me wrong, I wish I didn’t need a wheelchair to get around, but my reality is that I can’t walk and my chair allows me to live the life I want to live. But when I’m cornered and seen as a sexual object because of my chair, I’m not empowered — I am vulnerable. I am not flattered that you are giving me attention; I am creeped out and want to be left alone! Women with disabilities are three times more likely to be assaulted than able-bodied women, with 40% of women with physical disabilities experiencing an assault during their lifetime. Due to the stereotype of people with disabilities being considered “undesirable,” disabled victims are often not believed or taken seriously. That is terrifying to me. As women, many of us grow up constantly being told how to stay safe. We are told to never walk alone in a dark or desolate area, and if you must, have your car keys ready in your hand before you even step outside to get to your car. We are constantly told to make sure our clothes aren’t too revealing because we wouldn’t want to give men the “wrong idea.” We are always being reminded to be aware of our surroundings while walking, and if you think you are being followed, cross the street. Lastly, we are told that if we are in immediate danger, run! The problem is, a lot of the things women do in order to keep safe aren’t always possible for wheelchair users. As much as I wish I could say that I am able to do anything an able-bodied person can, I can’t. Don’t get me wrong, I’m not a victim because I need a wheelchair. But sadly, the truth is that this world doesn’t accommodate wheelchair users as much as it should. You can’t always cross the street if you think you are being followed because most of the time, there isn’t a low curb when you need one. You cannot self-propel and maneuver a wheelchair if you have your keys in your hand. Our reality is that we cannot run away, and if pushed out of our wheelchair, we are likely to be stranded on the ground, completely vulnerable. Being cornered and hit on aggressively is scary, but the thought of someone with a wheelchair fetish following me is terrifying. Pursuing someone solely based on the fact that they have a disability is degrading. Although our disabilities are often a large part of our identities, we are more than a diagnosis. We are people with passions and hobbies and most of us don’t want to be seen just as someone with a disability, but as the humans we are. I do not find using a wheelchair sexy and I certainly do not find being asked inappropriate questions while feeling vulnerable and unsafe sexy. So why would I ever want to be with someone who is only attracted to me because I’m a wheelchair user?

As a 25-year-old woman who uses a wheelchair, there is something about a wheelchair fetish that just doesn’t sit right with me. I’ve encountered men with this particular fetish at bars, public events, drugstores, etc. and every single time, I feel unsafe. I have been cornered and unable to get away, all while being asked extremely personal and inappropriate questions about my life and disability. Every time I encounter a man with a wheelchair fetish, I get a strong gut feeling that they want someone they can control, someone who can’t run away from them. To me, this behavior is extremely threatening and predatory. I usually love my wheelchair because it empowers me every single day, essentially acting as my legs. Don’t get me wrong, I wish I didn’t need a wheelchair to get around, but my reality is that I can’t walk and my chair allows me to live the life I want to live. But when I’m cornered and seen as a sexual object because of my chair, I’m not empowered — I am vulnerable. I am not flattered that you are giving me attention; I am creeped out and want to be left alone! Women with disabilities are three times more likely to be assaulted than able-bodied women, with 40% of women with physical disabilities experiencing an assault during their lifetime. Due to the stereotype of people with disabilities being considered “undesirable,” disabled victims are often not believed or taken seriously. That is terrifying to me. As women, many of us grow up constantly being told how to stay safe. We are told to never walk alone in a dark or desolate area, and if you must, have your car keys ready in your hand before you even step outside to get to your car. We are constantly told to make sure our clothes aren’t too revealing because we wouldn’t want to give men the “wrong idea.” We are always being reminded to be aware of our surroundings while walking, and if you think you are being followed, cross the street. Lastly, we are told that if we are in immediate danger, run! The problem is, a lot of the things women do in order to keep safe aren’t always possible for wheelchair users. As much as I wish I could say that I am able to do anything an able-bodied person can, I can’t. Don’t get me wrong, I’m not a victim because I need a wheelchair. But sadly, the truth is that this world doesn’t accommodate wheelchair users as much as it should. You can’t always cross the street if you think you are being followed because most of the time, there isn’t a low curb when you need one. You cannot self-propel and maneuver a wheelchair if you have your keys in your hand. Our reality is that we cannot run away, and if pushed out of our wheelchair, we are likely to be stranded on the ground, completely vulnerable. Being cornered and hit on aggressively is scary, but the thought of someone with a wheelchair fetish following me is terrifying. Pursuing someone solely based on the fact that they have a disability is degrading. Although our disabilities are often a large part of our identities, we are more than a diagnosis. We are people with passions and hobbies and most of us don’t want to be seen just as someone with a disability, but as the humans we are. I do not find using a wheelchair sexy and I certainly do not find being asked inappropriate questions while feeling vulnerable and unsafe sexy. So why would I ever want to be with someone who is only attracted to me because I’m a wheelchair user?

July is Disability Pride Month in the USA, a month commemorating the Americans With Disabilities Act (ADA) that was enacted in 1990. The purpose of the ADA is to prevent discrimination against the disabled population in America, and although this act has brought us a long way, we still do not have equal rights and opportunities. Discrimination against the disabled community is very much alive and kicking in America. I am a 25-year-old female with a genetic disease called mitochondrial disease. This disease is progressive, meaning that I will continue to become sicker with age, one day eventually dying from it. Mitochondrial disease is something I was born with, not something I chose for my life. I have no control over this situation in any way, shape or form despite my hardest efforts. I was misdiagnosed until I was 20 years old, only getting this diagnosis after a very long and traumatic hospital admission. Up until that moment, I thought I would get better, finish my degree, and join the workforce. That didn’t happen. I ended up having to move back in with my parents due to the severity of my condition. I receive home nursing (as well as other forms of in-home services), am a wheelchair user, require home infusions and tube feeds, and have multiple doctor’s appointments a week. I’ve easily had over a dozen surgeries, spend about 25% of the year admitted to the hospital, and take dozens of medications daily. I spend my life trying to stay alive. Because of my situation, I do not have financial freedom or much choice when it comes to healthcare. I did not work full time and pay into Social Security for the required amount of time needed to collect SSDI. I am far too sick to work full time (or even part-time) to get insurance through an employer and having a pre-existing condition prevents me from getting any insurance that is affordable, let alone one that suits my needs. In order to get the care needed to continue living, I go through the welfare program. That means I receive SSI and Medicaid benefits. Although these benefits help provide me with the care needed to survive, the guidelines put in place often keep the disabled community stuck in place, unable to make progress. When you receive SSI/Medicaid benefits, you can’t have more than $2,000 in assets (with the exception of one house and vehicle) or you will lose your benefits. That includes cash, any money in your bank account, CDs, the value of your life insurance, stocks and bonds. You can’t have fundraisers, inherit money, or try to save up for your future because you will lose your benefits, including your health insurance. All of this ensures that you stay dependent on the system. If you were to get married to anyone that is employed and living above the poverty line (pretty much anyone who doesn’t collect government benefits), you lose your benefits and health insurance. The government doesn’t care whether or not you can go on your husband’s insurance, (if he even has any) — you lose your benefits regardless. As a wheelchair user, there are many places I cannot go because of the lack of accessibility. Even if there is a ramp to get inside, many buildings still aren’t accessible. I cannot even guess the number of times when an “accessible bathroom stall” didn’t even fit my standard size wheelchair or the amount of times a business has roped off check-out lines, making it so a wheelchair doesn’t fit. Sometimes, I can’t even cross the street at a crosswalk because there is no low curb. All public buildings constructed after 1990 have to be made “accessible” so people with limited mobility are able to enter. Unfortunately, businesses built prior to 1990 are grandfathered in and don’t have to make any renovations. That means it’s common to come across bars, coffee shops, stores, restaurants, museums, schools, churches, etc. that wheelchair users can’t enter! It is infuriating! And although businesses are required to make accommodations by law, many do it reluctantly and with little to no effort at all. There are times where government events are held at locations that aren’t wheelchair accessible. How is the disabled community supposed to make our voices heard when we can’t even show up to the conversation? Decisions are made that affect our lives as American citizens, and yet we can’t even get through the door! Although it is illegal for employers to discriminate based on a disability, it is extremely common. Only 37% of disabled Americans (who are looking for work) are able to find employment compared to 77% of non-disabled Americans. They make an average of $5,000 less a year for performing the same exact tasks. Of these disabled Americans, 32% are part-time employees because they cannot find full-time work, meaning health insurance is not offered through their employer. I have learned that being disabled in America often makes you a second-class citizen. We are told to be grateful and to stop complaining when scraps are thrown our way. The programs we rely on are constantly on the chopping block, putting our lives at risk. The threat of our insurance being taken away is something we have to take seriously, because without insurance, we will die! We are constantly called “lazy,” “free-loaders” and “parasites,” when we are just doing the best we can. There have been countless times where I have felt less than human, not because of how I personally feel about my disability and situation, but because of how people treated me as a person with a disability. I have been called “entitled” and “unreasonable” for requesting a basic accommodation that a business is required by law to make. I take notice when “friends and family” post on social media calling people like me who rely on social programs “burdens on the system” or a “waste of space.” I am not the exception; I am exactly who you are talking about and I see what you really think about me. I am disabled and proud, but that isn’t enough! We need people to be more understanding and accommodating.We need everyone to be a part of this fight.We need people to treat us like the human beings we are.We need people to give us a chance.We need people to see value in our lives.We need America to be proud of the disabled community. We need America to stop treating us like second-class citizens.

Yesterday I lost a friend to the disease I live with, a disease that continuously takes with no regard for anything or anyone in its path. While it wasn’t the first time I lost someone to mitochondrial disease and I’m sure it won’t be the last, it still hurts like hell. I wish I could say that it somehow gets easier the longer you live with this disease — that you somehow manage to get used to the pain, but that isn’t the case. Although grief changes, it never gets easier to lose a friend, especially when they pass from something that affects you so personally. When you have a disease that is incurable and progressive, death is a reality for you in ways that most people cannot understand. It is a given that you will eventually die from your disease and that you will lose people along the way. I’m aware that death is a reality for everyone, but it is drastically different when you are sick with such a life altering disease. You watch your friends die before they are ready to go, all while knowing that may be your reality as well. Being diagnosed with a disease so rare and serious changes you deep inside in ways I cannot even put into words. When you are first diagnosed your life comes to a sudden halt. Everything begins to crumble all around you and you feel scared, lost and alone. It is not easy to hear your diagnosis the first time (or even the first 100 times), and if I’m being completely honest, it never really becomes easy. It just becomes part of your new normal. Life is never the same after news like that and the only way to keep going is by creating a support system filled with people who understand your struggles, know your pain and share your biggest fears. They are the only people who truly know what you are going through and the only people who can somehow make you feel like you are not alone in this messy disease filled world. You create these strong bonds that you will never have with anyone outside of your illness community, so when someone in your support system dies the pain hits in a very different way. Even when you think that you are OK, that you are somehow numb from all the loss, grief will always manage to break through. You can never escape it because it’s such a huge part of your life, but in order to get the support that you need you have to endure a lot of heartbreak along the way. Somehow, the amount of love that these people bring into your life is so much greater than the pain, making all the heartache worthwhile. When you lose someone to the disease that you live with, you think about how they died and wonder if that will be you. You wonder if you will die the same age as they did. Will you die at age 27, 33 or 39, or will you somehow live to be older? Will you die peacefully in your sleep or will it be drawn out and painful? You think about all your friends with this disease and wonder if they will die before you or if you will outlive them. And do you really even want to outlive them? How can you go on and live life without the only people who know what you’re going through? How can you possibly survive that pain? When you lose someone to the disease you live with, you are angry. It is not fair that they died so young and that they had to live with so much during their life. How is it that someone can fight to overcome so much, but still doesn’t get the time in this world that they deserve? When you lose someone to the disease you live with, you think about their family and the heartbreak they are experiencing. You think about how their parents will never feel whole again and about how the world will always be a little dimmer without them. All while you grieve for the friend you lost and the family they left behind, you think about how that will someday be your family grieving you. For me, this is the most heartbreaking part of this disease; knowing that I might one day leave this world not only before I am ready, but before my family is ready to say goodbye. That is the part of this disease that kills me the most. This story originally appeared on Grace’s blog.

All across America, people are refusing to wear masks, putting our most vulnerable populations at risk, all because they feel like being told to wear a mask is an “infringement on their freedom.” Last night, “Schitt’s Creek” star and co-creator, Dan Levy, posted a video on social media addressing these people. Levy states that he understands being told what to do is frustrating, but asks those actively not wearing masks to think of the situation in a different way. He pleads to his followers, saying: “Imagine seeing it [wearing a mask] not as an infringement on your freedom, but rather the simplest, easiest act of kindness that you can do in a day. Not just for yourself, but for other people who might have autoimmune issues, people who, if they were to contract COVID with those issues, might have some devastating repercussions.” Instead of approaching this tough topic with anger and frustration, Levy put a spin on the situation, comparing wearing a mask to a simple act of kindness, reassigning meaning to masks and ultimately making them a symbol of kindness, good deeds and of empathy and love. ✌????????❤️ pic.twitter.com/3XnpFhW6n2— dan levy (@danjlevy) May 20, 2020 Dan Levy’s unique message is one that many people need to hear. As someone who falls in the “high-risk” category, it is upsetting that there are so many people who are willing to risk not only their own health, but the health of everyone they come in contact with, all to make the point that nobody can tell them what to do. People like me are doing everything we can do to stay safe, but unfortunately we don’t know if it will be enough. It is terrifying to think about what would happen if I caught the coronavirus. It’s terrifying to know there are people out who put a lesser value on my life by proudly walking around public places without a mask. When you do that, your actions show the sick community exactly how you feel about us — that we are disposable. This is a scary time for everyone, especially for those who are living with health conditions. Having to manage your chronic illness while in the middle of a pandemic is new territory for everyone, and at many times, we feel like we are in way over our heads. We have little control of our health to begin with, and now, we have to worry about a virus that if we were to catch, we most likely wouldn’t survive. We are all doing our best to avoid public places, but unfortunately, it’s not always possible — we have to go to doctors’ appointments, infusion centers and other forms of outpatient treatment. We have emergency surgeries and hospital admissions. We have nurses and therapists coming into our homes who provide us with the care we need and we have people dropping off groceries and supplies. All of this puts us at risk of contracting the virus! Having a pre-existing condition shouldn’t mean that our lives are less important than yours. Please show us that you care, that you think our lives have value and that you believe that everyone has the right to live, all by wearing a mask. Last night, when Dan Levy posted that video, he showed everyone that he stands with the people who need protecting, the people who are doing their best. But we still need others to do their best as well. He concludes the video by saying, “So yeah, see it not as anyone or anything infringing on your freedom, but rather, if you have the freedom to leave your house, if you have the good health to leave your house, why not put on a mask? Make it your good deed for the day, and do something nice for yourself and other people.” Those final words say it all… Why not put on a mask?