If you’re following me on Twitter, you might have noticed my announcement earlier about a friend of mine (who also has hypotonia) named Issac and I declaring January 4th to be Unofficial Hypotonia Awareness Day, and you may have wondered, “Why January 4th? That seems completely random!” And to that, we say yes! But also no. Hear us out.
Once upon a time (yes I’m starting our story like this. Let me love Disney!), I found Issac. Or he found me. I can’t exactly remember (gosh, I am horrible storyteller). Either way, we both followed each other. One fateful day, he tweeted about his desperate longing for a hypotonia awareness day (okay, it wasn’t that dramatic, but I want to make this story a bit more interesting so… I’m gonna keep doing it). I replied that I was all for it but I had no idea what day we should choose. Then, a genius idea struck Issac. He replied that we should pick some random food day. This got me thinking, could spaghetti have its own day? And because human beings are weird (no offense human beings), of course, spaghetti has its own day: January 4th. But why spaghetti, you ask? Because many times, when describing the way hypotonia impacts one’s muscles, the metaphor of cooked spaghetti is used!
So that is the fateful story of how two teenagers set out to make an impact on their world! Share this story, amplify the message! We’re using the hashtag #UnofficialHypotoniaDay, so spread the word! Can’t wait to see how it turns out!
It’s officially Invisible Disabilities Week! And although this is one of the most anticipated weeks for myself and others with invisible disabilities, it comes with many mixed emotions for me.
This week can be incredibly frustrating for me. Outside of the disability community, I hear absolutely nothing about Invisible Disabilities Week. While some conditions such as breast cancer and autism are made a big deal out of at my school, no one there cares about or probably even knows about Invisible Disabilities Week. It can be a huge reminder to those of us with disabilities that aren’t very well-known that outside of our community, no one really cares that much about us.
However, this week also makes me very happy. Invisible Disabilities Week can be a huge unifier among the disability community. Some of my friends with disabilities and I celebrate the first day of Invisible Disabilities Week just like able-bodied people celebrate New Year’s or Valentine’s Day. During this week, many disabled people work up the courage to share their stories, which connects many disabled people together. Invisible Disabilities week knits the entire disability community closer together.
Living in two different worlds can be tough, especially during Invisible Disabilities Week. In the land of the disabled, Invisible Disabilities Week is a huge celebration and bonding experience, however, in the land of the able-bodied, life continues on as usual and nothing special happens. Maybe someday Invisible Disabilities Week will be just as well-known among able-bodied people. But until then, I will continue spreading awareness in the land of the able-bodied while celebrating in the land of the disabled.
This past July, I had the pleasure of getting to go to Savannah, Georgia, the birthplace of Girl Scouts itself, for a big event called QuestFest. It’s basically an event where teams would get clues on an app or website, then do certain activities in certain places around Savannah, then take and upload pictures to get points. One example of a “quest” was going to a park and taking a picture placing a stone on a monument. Another example was going to a Ben & Jerry’s ice cream shop and having to find out which flavors are only available in the shops and asking for samples of them. A third example was working out a complicated math problem to find out how many pounds of coconut are used in Girl Scout Cookie factories in a week during cookie season (in case you’re curious, the answer was about 75,000 lbs.). As you can see, there was a wide range of quests. I had an amazing time! Although my team didn’t win, we had a lot of fun and all got a lot closer. While preparing for this trip, I was worried about how accessible it would be, as I have a disability which made my experience a bit different from the able-bodied girls there. Accessibility wise, the people planning QuestFest actually did a pretty good job! I saw girls, leaders, and volunteers with disabilities all having a great time along with me! A lot of QuestFest was very wheelchair accessible. At the Expo they had, the aisles were very wide, as well as the gift shop. A lot of the indoor quests were held in accessible buildings, and most of the quests themselves were accessible. There were wheelchair accessible seats at the concert (although they were all the way in the back of the convention center). But there were some things that the people who designed QuestFest didn’t think about when it came to making QuestFest accessible. For example, most, if not all, quests said that either everyone must participate or said that a minimum amount of people had to participate. I’m assuming this is to ensure that the entire team is participating in the quests and that it’s not just one person doing everything. Sounds like a good idea, right? Well, there’s a problem in this system. In small groups, these limits can force everyone to participate in every quest. Doesn’t sound like a problem to you? Well, it can be. In my personal situation, I was in a group with six girls and three adults total (which is very small in comparison to the other groups). My disability causes me to get tired really quickly and I will need breaks while doing lots of physical activity (i.e. walking around Savannah, Georgia, along with the quests that require lots of running around). But because of the minimum amount of people that had to participate, my small group size, the pressure to do as many quests as possible, and my group’s desire to keep on the go, I wasn’t able to rest or take as many breaks as I needed. There was one quest in particular where, if I had a choice, I would have sat out of. We had to play a game called cornhole, which required you to be able to run quickly and be able to throw far. But due to the minimum amount of girls who had to play actually being higher than the number of girls on my team, I had to play. My teammates quickly got frustrated with me and it was extremely tiring, but before I could ask to sit out, my group found another quest to do. Two quests later, I’m still out of breath and as my group’s about to do a quest that involves playing freeze dance, I ask to sit out, but once again, the quest’s requirements said that all girls must participate. Another thing that could be improved by next year is that there were only two days, one of which was a full day, one of which was a half day, to do the quest. I feel that, especially for people with disabilities, having many shorter days would be better than a few longer days, since longer days can be extremely tiring while there’s still all the pressure to do as much as possible, as opposed to many shorter days, where after half a day, all quests will be over and all the girls participating will be able to rest until the next day, when quests will resume. But to end on a positive note, despite some of the challenges, I had an amazing time! I learned so much, and getting to travel to Savannah, Georgia was an invaluable experience!
UPDATE: Another version of this article has been posted on The Mighty. You can see it here!
It’s that time of year again, soon, school is starting (hear that sound? It’s thousands of parents cheering)! As a disabled high school student in mainstream classes, these are the top seven things I hope my new teachers understand:
1. Just because I need accommodations doesn’t mean I’m not smart
It’s possible for me to be in your honors class and/or have good grades and still need accommodations. There’s no such thing as being “too smart to be disabled.” First of all, my disability is physical, it affects my muscles, not my brain. Second, people with intellectual/cognitive disabilities can still be smart. I have multiple friends with cognitive disabilities that are in more honors classes and have better grades than me!
2. Similarly, just because I have good grades doesn’t mean I don’t need my accommodations
Although you may think that since I’m doing really well, I don’t need to use my accommodations, it is actually the exact opposite. I need to use my typing and extra time accommodations to be able to finish tests and assignments, for you to be able to read and grade my tests and assignments, and so that I’m in less pain than I would be in if I didn’t use my accommodations. If I didn’t have my accommodations, I would not be in nearly as many honors classes or have grades as high as they are now. In fact, I would probably be barely passing, if I would even be passing at all.
3. Bullying is serious
It’s ridiculous that I even have to add this in, but after many not-so-good reactions to bullying from past teachers, I feel the need to put this in. First of all, bullying is not the same as drama. There is a huge difference. Second, when I tell you I’m experiencing bullying, I’m being serious! I don’t mean someone was joking around with me or said something rude once, I mean someone has been and probably still is saying/doing really mean stuff with the intent of seriously harming me. And last but most definitely not least, if you see me getting bullied, and you are able to, do something! I can’t always defend myself in these situations, and if all you’re doing is standing there watching, I’m sorry but you’re not doing your job!
4. I can’t always raise my hand “all the way up”
I know this can be a serious pet peeve of many teachers, and I don’t do this on purpose, but when I raise my hand, it isn’t always “all the way up”. Sometimes I need to rest my elbow on the desk, sometimes I need to support my arm with my other hand, sometimes I need to do both. I can raise my hand high for a short period of time, for example, if you’re taking attendance, but if you want to call on someone to answer questions, it can be really hard/painful to hold my hand up for more than a minute or two.
5. I don’t just want accommodations, I need them
I’m not just typing essays because I don’t feel like writing them. I have to type. If I don’t, you will have a really hard time reading my essay and I may receive an unnecessarily low grade for it. I will also be in a lot of pain and have muscle spasms/uncontrollable shaking in my hand which makes it hard to function for the rest of the day. Therefore I am not telling you I have to type because writing would be inconvenient. I have to type because writing an entire essay by hand would significantly reduce both my grades and my ability to function.
6. I want you to ask me questions
Please, ask me questions! If you want to know why I have an ankle brace, ask me! If you want to know more about my disability, ask me! And especially if you need to know something about my accommodations, ask me! I honestly don’t mind answering questions as long as they aren’t phrased in a rude way.
7. Try not to use the r-word or other ableist terms
Don’t. Just don’t. There’s no need for ableist language when there are thousands, if not millions of other words and phrases to use instead. I understand that you don’t always mean to, but if you do, I won’t hesitate to go up to you after class and (politely) correct you.
This is just the beginning. Hopefully, my teachers will be really understanding this year. Is there anything else you’d want your teachers to understand? Comment below!
UPDATE: Another version of this article was published on The Mighty! You can see it here!
I am a Disney freak. I am in love with anything and everything Disney-related, so when I first saw Descendants, a movie about the children of Disney villains moving to live with the children of all the good guys in Disney movies, I was obsessed. In the first Descendants movie, Mal, the daughter of Maleficent, Evie, the daughter of Evil Queen, Jay, the son of Jafar, and Carlos, the son of Cruella DeVil move from the Isle of the Lost, where all the villains and their kids live under an impenetrable magic dome, to Auradon, where all the good guys and their kids live. They originally plan on stealing Fairy Godmother’s magic wand during the coronation of Ben, son of Belle and Beast, but they all decide to become good and stay in Auradon. Mal even falls in love with Ben and becomes his girlfriend. The sequel to Descendants premiered a week ago, and from the first time I watched it, I was hooked (Get it? Because one of the new characters is Harry Hook? Yeah, I know it’s a bad joke). And as much as I loved Mal in the first movie, I found her even more relatable in the second movie. These are just ten of the ways I can relate to Mal:
1. She tries to blend in with the rest of her peers
Mal doesn’t want people to think of her as simply “the girl from the Isle of the Lost.” She wants to blend in with the rest for the AKs (kids originally from Auradon), so she tries to change her personality, her hair, and her clothes so she would look like an AK. Similarly, I will try to do whatever it takes to try to fit in with the other kids. If it means putting up with that horrible “pop culture” music that they listen to, so be it.
2. She gets asked rude and invasive questions by others
Mainly the press. She gets asked questions like “Ever think a girl like you would be lady of the court?” and “Is your mother still a lizard?” Even her boyfriend, Ben, gets asked, “Did you ever think you’d be with a Villain Kid?” Mal is told to just ignore them (yeah, because that always works). Later, we see a news program in which Mal is referred to as Ben’s “girlfriend from the wrong side of the bridge,” referring to the bridge between Auradon and the Isle of the Lost. This is also sadly the type of questions from the press and news questions disabled people receive. I’ve gotten (and heard behind my back) many rude questions from my peers including but not limited to “Why does she get to type the essay?” “Why do you get to have extra time on the test?” and “How the heck did you do so bad on the physical fitness tests?”
3. Her friend does what’s best for her, even if she doesn’t want it
When Mal is using her spellbook to the point where she could get in trouble, Evie not only discourages her reliance on the spellbook but takes her spellbook away from her. Mal struggles and fights this and even tries to give her the sad puppy-dog face, but Evie says to her, “Don’t give me that face. Put the pout away. You know I’m right.” This is scarily accurate to what my friends S and J will say when they do or threaten to do something that I don’t want to do but it would be good for me. I will fight so hard when they try to do this kind of stuff, and I will admit to occasionally bringing out the sad puppy-dog face, which my friends also never submit to.
4. She takes on more than she can handle
Mal tries to go to her classes and make everything Ms. Potts made for Belle and Beast (which, if you haven’t seen the Be Our Guest scene in Beauty and the Beast, is a lot!) for Ben all in one day because she wants to appear as if she’s perfect. I will admit that I do this. All. The. Time. Once, I agreed to go to two GS Chorus performances and the longest shift at a cookie booth sale, all in one day. What the heck was I thinking?! By the end of the day, I was in so much pain I could barely sleep, so I got no rest and felt like I was run over the next day. If someone asks me to do something or asks for volunteers, you better believe that I will say yes. I’m always trying so hard to appear as perfect and play “savior” that I’ll totally forget that oh yeah! I have these things called limits!
5. Some people snap at her and compares their struggles to her
While Mal is on a date with Ben, he finds out that she has been using her spellbook to make her hair blonde, to study, and to cook a meal for him. He yells at her for using the spellbook, and she tells him that it’s been really hard for her lately, and he replies, “Yeah, some things are hard! Do you think learning to be king has been easy for me?” Sadly these kinds of statements can be found often in the chronic pain and disability communities, as well as from able-bodied people. I’ve heard statements such as “Yeah, my back/legs hurt me too” or “Yeah, gym class is hard for me too” many times from my peers, as they try to empathize, even though they’ll never really know what it’s like to live in my body.
6. She tries to appear strong in public but breaks down when she’s alone
Mal pretends that she’s perfectly okay in front of others, sometimes including some of her friends. In the song “Space Between” Evie, Mal’s best friend says that she “thought that [Mal was] fine.” But once Mal is safely in her bedroom alone, she starts crying, revealing her fear that she doesn’t belong in Auradon. I do something similar, smiling and saying repeatedly that I’m fine while I’m in pain, especially if someone else asks me if I’m okay. I will then withdraw to my bedroom and start crying. I’m trying to let myself open up to my friends more and break this habit.
7. She sometimes snaps at her friends out of frustration
Mal goes into Carlos’s room to give him something, but as she shuts the door, you can hear the press trying to get her attention. She then paces back and forth and shuts off the TV that’s currently playing the news program mentioned in number two. She is clearly on the verge of a mental breakdown and gets dizzy and nearly falls. Carlos says to her “Easy, girl.” Mal snaps back “What, you think this is easy? You don’t have people taking a photo of you every single time you open your mouth to say boo! Not that I could even say boo!” I admit to doing this out of pain, fear, and frustration to my friends, parents, brother, and sometimes even my teachers. Every time, I apologize almost immediately and hate myself for snapping at them for the rest of my life. I wish I didn’t do this, but when I’m in a lot of pain and frustrated and anxious, I’ll sometimes lose my filter and say things I don’t mean.
8. She feels more comfortable around other people in her situation
Mal finds herself more at ease and less awkward on the Isle of the Lost, surrounded by the children of villains, kids like herself. Likewise, I find myself more comfortable around other people with disabilities. As a matter of fact, almost all of my friends are disabled! I don’t know why, it’s just easier to talk to and interact with disabled people than able-bodied people.
9. She thinks she’s bad for her friends
When Ben talks to Mal, trying to convince her to go back to Auradon with him, Mal states that she’s a bad influence on him and pushes him away. During a truly heartbreaking moment later in the movie, Mal says to Ben, “I never told you that I love you because I thought I wasn’t good enough. And I thought it was only a matter of time before you realized that yourself.” I sometimes find myself thinking in this mindset, occasionally believing that I am just a burden on my friends and that they’d have more fun on trips if they didn’t have to stay with me and make sure I’m okay all of the time. I then remind myself that they do this simply because they care about me and want to make sure I’m safe.
10. She has amazing friends who would do anything to help her
Just like Mal has great friends, I have some of the best friends in the universe. Enough said.
UPDATE: A version of this article was just published on The Mighty! You can read it here!
I'm a 15 year old who loves singing, reading, writing, and campaigning for hypotonia awareness.
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