Hi! I'm Malia Ellis, I live with a rare condition called Epidermal Nevus Syndrome which has totally transformed my life. If I was able to see someone who looked like me on the big screen when I was first introduced to this journey it would have been greatly appreciated. Having a role model that has gone through similar life experience can be the all the motivation a person needs to get better. Young adults today need to be reminded that they are not alone in this world. Informing and enforcing education about the term “disabled” and “disability” can help the world to see us as who we are rather than what society portrays us as. I am choosing to turn my negative situation into a positive one by being raw and honest about what it’s like to live life with a disability. Malia’s Movement is a step towards diversity, equality, self love, and acceptance.
“If you feel like you don’t fit into this world, it’s because you’re here to help create a better one.”
Trying to feel confident about my body in a world where you’re told you need to look “perfect” or act a certain way to fit in can feel super stressful and impossible at times. I don’t even think that I’m totally confident with myself and here’s why. My body aches everyday, I have numbness in my lower legs, I take medication three times a day, and I receive help in my daily life. I have insecurities and I have things I do need to work on. Every morning when I wake up I have to make a conscious decision to have a good day.
My lifestyle continually changes, I’ve altered the way I live life because I’m not your average girl with regular day to day issues. I have had to shut the world out because for a long time I was worrying if the world would accept me but in reality the only acceptance I needed was from myself. Accepting having to potentially live life unable to fully walk was and is a hard pill for me to swallow. It’s difficult knowing that I may never go back to the way my life used to be or be able to walk in public without getting stared or pointed at. These are the possibilities I may have to live with for the rest of my life.
It terrifies me sometimes when I start to wonder how I will take care of myself in the long run. All I know is that accepting the possibilities of my future has given me room to move forward. I may not know what the future will bring or how society will view me but at the end of the day it’s the way you respond to situations that you can’t control. I have gone through serious life changing events and if I don’t take the steps to leave my mark then all of this would have been for nothing.
No matter where I’m going I always try my best to get dressed. Whether I’m going to a dinner or just going to the supermarket, I represent who I am. This is something that fills me up with excitement which also gives me motivation to get up because when I look good, I feel even better. When it comes to fashion, I rather have people see my cute outfit before they see my crutch because I am more than just my disability.
When people hear the word “disability” they picture the negative side of what someone can’t do but they never take the time to wonder about all the things they can do and accomplish. With someone dealing with scoliosis it is hard at times to find the right outfit that fits to my liking. I take my time to find options for my outfits.
Here are my go to looks:
Day Time: Casual But Trendy
Night Time Look: Dressy and Stylish
There’s something about getting all dolled up that I absolutely adore. When I walk into my favorite beauty store it’s like a kid walking into a candy factory. The scent of perfume fills the air, the sight of bright colors and isles of beauty supplies light up my eyes, the sound of customers shopping gives me a rush of excitement, and the feeling of swatches of makeup pallets infatuate my body.
This is a time where I can break away from life and just have fun doing what I love. I start by picking up my essentials like my mascara, primer, eyebrow pencil, and lip pencil. I’ll then look for something that catches my eye like a new lip gloss or eyeshadow pallet. Beauty is something I found interesting at the age of 12 and I haven’t looked back since.
There are two types of makeup looks that I do and that is either a full glam or a natural look. A full glam of makeup takes me around an hour and a half. A natural look takes me around 30-45 minutes. Yes, I am almost always the last one to leave the house because beauty takes time. I have recently gotten into skin care. I have started to incorporate items like serums, toners, eye creams, face masks, and lip masks to my routine. I could spend all day playing in makeup and it’s something that just comes easy to me. Makeup is my happy place but it also takes my mind off of reality.
My hope is to change the way the world views disabilities. Naturally incorporating the lives of those who live with a disability into mainstream media would be revolutionary. By showcasing us on the cover of magazines, becoming brand ambassadors with top brands, or just strutting down the runway would help change the realm of disabilities. Presenting us with equal opportunities will showcase that we aren’t less than or helpless. There are a great deal of people who live with a disability everyday and if we can march toward diversity then young boys and girls who are either born different or have encountered accidents in their lives will not have to question their purpose.
Dealing with scoliosis has been one of my biggest challenges along my journey. It felt as though my body was betraying me and I couldn’t do anything about it. I was diagnosed with scoliosis at the age of 12. My spine curved dramatically and rapidly in the shape of an S in three months. My life quickly transitioned from being a lively child who participated in musicals, dance classes, and sports to someone who was in pain 24/7 and ultimately began to see doctors more than my friends. My world was crumbling from the outside in and I felt absolutely ugly in my own skin. I had to grow up at an early age because I could no longer do the activities I was once able to do. I didn’t know how to explain what was happening to my body and so I decided to hide until I found my confidence. Scoliosis is my biggest victory but it is also my biggest insecurity, I own who I am but that doesn’t mean I’m fully in love with myself when I look in the mirror. I am still on my journey to self love but I have grown to accept my changes.
“In order to love who you are, you can not hate the experiences that shaped you.”
Hey everyone, here's a few facts about me:
I’m 19 years old and I am the youngest of three. I’m 5 ‘3” ½, my favorite color is lilac purple, and my favorite animal is an owl. My birthday is April 4th, I’m an aries which means at times I can be very fiery but I can also be super sweet. Three words to describe would be wise, creative, and resilient. I am currently in college obtaining my associates degree and looking forward to growing Malia’s Movement.