Disability Pride Month 2023

 Hello lovelies, 

   Today I will be attending my fifth Moebius Syndrome Foundation conference! If you want to read more about Moebius you can check out this link. I found out that I had Moebius when I was 10 and it felt like I had found a puzzle piece of myself I have been looking for. It felt like I was the only person with my problems until I got to meet people online that got what I was going through. I went to my first Moebius conference when I was 14. I still can't find the words to describe the atmosphere and the warmth I feel when I see the Moebius community. 

    Fast forward, I am 23 and it is so cool to grow up with my friends and get to help inspire the younger ones that were my age when I found out about Moebius. As a bonus, I became a Social Media Assistant in March for the Foundation and I have loved every minute of it. It brings me such joy to help in some way even if it is just through the screen. 

   Also, July is Disability Pride Month! This month is so special to me because it’s a time of spreading awareness and beating the stigma of having disabilities makes us incapable of what we can do. Disabilities aren’t just physical but mental as well. 

Disability does not mean inability. 

When I was little, the doctors told my parents that I wouldn’t be able to drink out of a straw. A couple years later, I figured out a way to drink out of a straw and showed my mom. 

She cried. 

For my whole life, I thought I’d never be able to get my lips to touch. It was just something I accepted. In speech therapy, they had the idea of getting me to stretch my lips just to see if that would help them touch. 

At first, I did the exercises with no hope that my lips would touch. As time went on, I did more of the exercises until the day arrived that I could press my lips together. It’s still such an amazing feeling and I’m so proud of myself. 

Once, I got told that it must be hard to make friends with my disabilities which blew my mind. The thought never crossed my mind. Yes, I have social anxiety but I never thought looking different would scare friendships away. I’ve gotten lucky in the department of friendships and growing up, I went to school with the same people for the most part. I had no reason to think differently. In college, it’s such a huge place that it was overwhelming sometimes but I never thought the way I look or speak would turn people away. 

The reason is: truly good people won’t care about what can hold you back but instead support you. 

On my first date with my boyfriend, he took it upon himself to research about Moebius Syndrome on his own without me mentioning it. That gesture meant so much to me. This was something that did have me nervous: that my disability would make me unattractive. That I wouldn’t find anyone that would romantically take interest in me or I’d be too much. 

Now, I know that mindset isn’t right. I know I’m a great person with an awesome personality and a huge heart. You’re never too much for the right people. 

It’s scary to be honest on here but it’s helpful that I know I’m not alone with these feelings and I want to share this in case anyone else needs to know that they’re not the only one thinking like this. 

I also want to be a voice for the Moebius and disability community when I say that it’s never a bad thing to ask questions and be curious. I’d rather have questions from little kids about why I talk the way I do rather than be hid from. It’s so important to teach kids that even if someone looks different from you or acts differently, they’re still human. Do not assume things about someone just from watching them. 

Please if someone has a speech impediment and you don’t understand them: ask to repeat. I promise you it’s so much better knowing you’re being understood rather than pretending to know. 

Please have patience. Don’t be judgmental. Be kind and gentle. Educate yourself. Spread awareness. 

Love always, 

Zayniator 

Currently listening to: Scar Tissue by the Red Hot Chili Peppers

Kindness Goes A Long Way

 Hello my lovelies, 

Originally, I was supposed to have this out last week but college life and the roadblock of not knowing how to express my thoughts in words for you all... until now. 

As most of the people reading this know, January 24th is Moebius Syndrome Awareness Day. It took my family ten years to find out about this and ever since, it has felt like a piece of me that I am so proud of. The Moebius community is something I can never express in words of how glad I am to have them. I love sharing awareness for myself and for them in hopes of helping it get to be well known. 

So, seeing all the purple this year and all the wonderful messages you all have shared with me or talked about me does not go unnoticed. I am usually pretty awkward at taking compliments because words do mean a lot to me. The hardest critic I have is myself and it is reassuring to know the impact I have made on people for the better. I will never be able to explain how much this means to me. 

Bonus story: if you know me, I love music so much. One of my favorite underrated singers I love called Banana Club noticed my message to her and she wore purple and let everyone know about it too. Big fangirl moment for me... moving along. 

The most important objective for me: trying to do my best. Sometimes I am having a bad time but it means a lot that kind people do exist. The world sometimes can feel so dark, lonely, cruel, and hopeless but it can be the small things that can make me feel better. Such as, having my blog for as long as I have. It never gets old if I get told that I have reached someone's heart or made their lives better. 

Just a reminder: it is okay to have sad days and moments. I forget about this then feel even worse that I am not okay. It is perfectly normal to not be okay all the time. 

Another thing I love is patience people have to try to understand me when I speak. I have had times where I have gotten the wrong order because I wouldn't get asked what I said but I could tell by the cluelessness looks that they were winging it for the best. Other times, when I am with friends, workers just ignore me completely and depend on them for my order. I understand the pressure and nervousness one can have thinking about asking me to repeat myself or attempts to try to understand me but I promise you that if you need me or anyone else to repeat themselves, more than likely we would be happy to.  

One of the favorite times of my life to think about is when I broke my foot (by stepping off a curb....) during my freshman year of college. Now you may be wondering: Zayne, what do you mean one of your favorite eras of my life? Well, when I broke my foot and had to wait for the ambulance, an old man stayed with me the whole time to make sure I was okay. He didn't know me at all but kept checking on me. Another time, when I was riding around in my electric wheelchair, it got stuck in the grass... so I was hopping around trying to get it back onto the concrete and another random person walked up and helped me. Let's not forget the time I got free sweet tea from Chick-fil-a and a good football watching session. 

It is the truly small acts of kindness that make my heart happy. 

It is the people who don't judge by the cover of the books, too. In my freshman year of college (pre-COVID), I would sit outside on warm days to read my books on a bench in front of my dorm. It got so often that I started seeing regulars hehe. One person that would always stop and talk to me finally one day sat down and we spoke for thirty minutes about the most random things. At one point, he started telling me the way I spoke and looked intrigued him in the best way that he wanted to get to know me. It was one of the best compliments I ever received and I cried because one of my insecurities is the way I look may turn down people's wants to interact with me. I know it is such a stupid fear but I am battling through it. 

Side note: I had to take out my photo ID to make sure they understood my name. Almost everybody I have met has complimented how cool my name is which is fun but it is a struggle sometimes to say my own name. I do love ordering on my college campus because I pay with my student ID so they can just look at it then know.  It has also become a hobby of mine to use my middle name (which is Christine) or the name Lily for my coffee orders instead of going through the process of trying to get one to understand my name. Yes, I guess you can say that I can try to say my name out loud but I have gotten to the point where my patience for myself to say my name isn't there sometimes. 

I guess the overall message for today's blog is no matter the act of kindness, I feel like it will make a difference in someone's day. I will always remember telling a substitute "thank you" just for a piece of paper in middle school and she ended up crying while telling me she hasn't heard that in a long time. 

Thank you once again for reading my blogs and making me feel like I am making a difference. Happy February! 

Love always, 

Zayniator

Remember to smile with your heart! 

Listening to: Wildfire by The Wombats 

The end

Disability Pride Month

Hello my lovelies,

I recently learned that July is Disability Pride Month! Disability Pride Month is for showing awareness of disabilities, honoring our struggles, and spreading love when people struggle and look different from you that they are equal and human.

I am Zayne. I'm 20. I have the following: Moebius Syndrome, Pierre Robin Sequence, and Duane's Syndrome. Half of my face is paralyzed which makes me have a crooked smile and hard time speaking, my eye sometime turns in which I wear glasses to help with (plus I have bad eyesight let's go glasses team!), bad hearing, cleft palate,  have scars on my throat from medical times when I was a baby. I had a hole in the roof of my mouth when I was younger that I got fixed. I have had over 24 surgeries in my life.

I have witnessed and felt judged by my disabilities in my life but I try to remember that I am better than that. I remind myself that not everyone will be so nice and helpful to disabilities. I still have flashbacks to when a boy called me Down Syndrome because of how I look and spoke. Kids constantly stare at me every place I go but I make the best of it by smiling at them and make funny faces hoping to get a smile back. I try the best to find the positive in every moment.

Yet, I am so grateful. I know things could be so much worse. I have a half smile and I can blink my eyes and I can walk and I can breathe on my own... I can go on. I feel like us as human beings forget to take a moment to be grateful for our own abilities sometimes.

Also, disabilities aren't just physical difficulties but mental as well and internally. That makes them even more beautiful and unique and warriors. They are making it through it day by day, even when they have help with them.

To anyone who helps people with disabilities: thank you. You are a superhero and your work is literally life impacting. You deserve to be recognized for your work and I am so glad for those who have you in their life. 

The fact that there are people out there who hold themselves on a higher scale of importance than those who struggle physically and mentally bother me to pieces. Life is not fair but you should not go out of your way to make others feel terrible for things that they are incapable of.

Nobody asks for their inner struggles. Nobody asks to have a family member deal with disabilities. Nobody asks for their physical disabilities.

If anything, you should open your mind and hearts to those who struggle. We all are human and it would be better to hold each other up instead of focusing on our differences.

Open the door for strangers and those in wheelchairs. Check if they need help!

Be patient with those who struggle with speech impediments and ask nicely if you want them to repeat themselves. Speaking from my own experience, it is much better asking than acting like you understood.

Speak loud enough for people with hearing struggles and don't be angry or frustrated if you have to repeat yourself. I promise it will help!

Do not discredit those who struggle mentally. They are trying their best.

I wish I could name every single disability people struggle with but I do not want to miss one. Just know disabilities are not identities and we are more than that. Mental illnesses aren’t identities either.

Please spread awareness of disability pride month. Make sure everyone in your life and in general know their worth. Don't discriminate someone on how they look and incapability.

You are valid.

Love always,

Zayniator

P.S thinking about my Moebius friends and can't wait for the next time I can hug them all.

One of my favorite pictures from the last Moebius Conference

What is Moebius Syndrome? Click here to learn more!

What is Pierre Robin Sequence? Click here to learn more!

What is Duane's Syndrome? Click here to learn more!