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Basic Intro Ok, so! To get right to the point, I'm Emilee. I am visually impaired as well as colour blind and have light sensitivity. I use a cane outside and when I travel independently. I am a very physically active person and I encourage you to check out more of my stories on this platform, but one of my other favorite things to do is shop and here's how! How I Shop with Someone Else First off, most of this time I will bring a family member or friend with me when I go clothes shopping so that they can describe it to me as far as the colour and style when I can't see it. This is also super helpful because most often I'm with someone who knows what I like so it can narrow down the search, especially because it can be very overwhelming when you first walk into a store. How I Shop by Myself Now, what if I don't have someone with me? Well, let me tell you that the staff are not just there to look good, they are there to help you! I think the best way to go about it is to ask them to help you. Tell them what you are looking for and ask them to describe clothes or products. I relate to you all that it can be hard to ask for help but trust me when I say that it is the best option. How to Identify Products on Your Own If I really don't want to ask someone for help, I result to my own assistive technology. I will use a magnifier on my phone to zoom in on labels and read them. I also have colour identifying apps. There is also an app called Seeing AI that also works well.

Basic Intro Ok, so! To get right to the point, I'm Emilee. I am visually impaired as well as colour blind and have light sensitivity. I use a cane outside and when I travel independently. I am a very physically active person and I encourage you to check out more of my stories on this platform, but one of my other favorite things to do is shop and here's how! How I Shop with Someone Else First off, most of this time I will bring a family member or friend with me when I go clothes shopping so that they can describe it to me as far as the colour and style when I can't see it. This is also super helpful because most often I'm with someone who knows what I like so it can narrow down the search, especially because it can be very overwhelming when you first walk into a store. How I Shop by Myself Now, what if I don't have someone with me? Well, let me tell you that the staff are not just there to look good, they are there to help you! I think the best way to go about it is to ask them to help you. Tell them what you are looking for and ask them to describe clothes or products. I relate to you all that it can be hard to ask for help but trust me when I say that it is the best option. How to Identify Products on Your Own If I really don't want to ask someone for help, I result to my own assistive technology. I will use a magnifier on my phone to zoom in on labels and read them. I also have colour identifying apps. There is also an app called Seeing AI that also works well.

Who Am I? My name is Ariana Covarrubias, I am a 19-year-old college student in Los Angeles, CA. I am majoring in mass communications with an emphasis in public relations and advertising for the entertainment industry. For someone who has a chronic illness, I’ve lived a pretty “normal” life. From Pre-K to 12th grade, I attended school and did all my assignments. I would hang out with the few friends I had and go out with my family. Again, like the typical person. However, what wasn’t typical was people’s perceptions and reactions towards me and my physical appearance. I walked through hallways and classrooms while my classmates pointed out my flaws caused by my condition. Whenever my peers had a chance, they would ask why I wore bandages every day or why I had no nails. All due to a condition that I have no control over. My Life-Threatening Illness: Epidermolysis Bullosa I was born with a rare skin disorder called Epidermolysis Bullosa. Although the phrase “skin disorder” may make it seem as not a big deal, it is the complete opposite. In fact, the skin is our #1 main organ and for people like me with Epidermolysis Bullosa (or EB for short), it is the organ that doesn’t function properly. EB is a genetic skin condition that can only be obtained at birth and is caused by the missing protein that holds the two layers of skin together called Collagen 7. EB causes my skin to be extremely fragile. (When I say extremely fragile, I mean going to sleep and waking up with missing skin somewhere in my body) type of fragile. Daily activities that the typical person takes for granted, such as walking, eating, showering, cause open wounds that become extremely painful and take weeks to heal (if at all). EB is something that I have never taken lightly, as it is slowly deteriorating my body, my ability to do certain things and over the years have taken friends away too soon. My journey has been challenging and I would not wish this life upon anybody, but this journey has also allowed me to positively impact and inspire others by showing them that beauty is not only defined by our appearance. Diversity in the Beauty Industry It’s hard to be the unique one. The one who always stands out of the crowd. It’s hard to be the one that goes home crying from a day out because the stares and constant questioning was too overwhelming. In my almost 20 years of life, I’ve learned that there are people that will be cruel, that won’t accept me for looking different, but there will also be those who will support me and accept me like any other person. I've also learned that the only acceptance I truly need is self-acceptance. As a passionate woman for makeup and the beauty industry, I aspire to be the role model of little girls with a physical difference. I want to be a positive influence for the upcoming generations, and show them that beauty is not just defined by the color of someone’s eyes or the shape of their body. No one should be ashamed for what they look like. So what if we don’t fit society's norms of beautiful, we’re still powerful individuals that can accomplish amazing things in life. My Message to Others If I could tell people one thing, it is to always be accepting of other people, no matter their race, color, gender, anything that may differentiate them to you. We never truly know what people have gone through or what they go through on the daily so we should always be willing to learn and accept others for who they are, not for what they look like.

I am so grateful for my life everyday In 2002, when I was in my mid-20s, I had the worst headache of my life—a headache that caused vomit, loss of vision, and I blacked out. The source of the problem was a tangle of blood vessels in my brain, known as an arteriovenous malformation (AVM). My AVM started bleeding—a life-threatening emergency. Quick stabilization and surgery by Co-Director of Neuroendovascular Services Dr. Sean Lavine and Vice-Chairman of Neurosurgery Dr. E. Sander Connolly at Columbia University Irving Medical Center/NewYork-Presbyterian Hospital saved my life. Today, it’s been 16 eventful years since the surgery. I'm now a mom, wife and teacher’s assistant at an elementary school. I'm doing great, and I have two neurosurgeons to thank for it. If it wasn’t for Dr. Lavine and Dr. Connolly, I wouldn’t be here. Life after My AVM started bleeding Every day, what happened to me pops into my mind. But I just push along with my day. The bleeding from the AVM left me with a tremor in my right hand and some short-term memory loss, but that doesn’t hold me back. It doesn’t stop me from living my life. I look at it like: I’m so grateful to wake up every day, put my two feet on the ground and live a normal life. I’m definitely more grateful for life now. Reconnecting with the surgeons who saved my life Recently, my daughter and I had a chance to stop by and say hello to Dr. Lavine. I've kept in touch with my surgeons over the years, but this was the first time I had seen Dr. Lavine in a decade and a half, and my 13-year-old daughter had never met either of my neurosurgeons. "you don’t always realize how much of an impact you have on somebody’s life" My daughter, Victoria, finally meeting Dr. Lavine was great because she’s heard so much about him for so long. That was really special to me. Afterward, I sent him an email thanking him for his time and saying how special it was for Victoria to meet him. He sent back a nice email that said, basically, you don’t always realize how much of an impact you have on somebody’s life. And he said, ‘Thank you for reminding me of that.’ There will never be enough thank-you’s for that man.” I'm hoping one day to bring my daughter into Manhattan to visit my other surgeon, Dr. Connolly. I'm hoping to go up to Columbia around Christmas time to see him because the city is so beautiful then. I've been to the Columbia campus since my last follow-up appointment before Victoria was even born. I hope my story will be helpful to other people and families going through what can be a difficult and frightening time. I’d like them to know that there is hope after an emergency like mine—that, in fact, wonderful years full of gratitude is possible. If there’s somebody who is going through what I went through, I hope they or their family happen to go on the Columbia website and read my story. I mean, if I can give somebody and their family hope, that’s all I want to do.

Golden Har Syndrome & Vater’s syndrome My name is Rasheera Dopson. I’m 28 years old and I was born with two rare diseases: Golden Har Syndrome and Vater’s syndrome. Both of these conditions consist of congenital anomalies and birth defects. Over the course of my life, I’ve had 103 surgeries. I was raised by my single mother along with my two older siblings. We didn’t have a lot of money but we were the average median income African American family. I grew up thinking the world was at my fingertips and that I could do anything, and that anything was possible. Nevertheless, that bubble quickly burst when I turned 18 when I realized the world was not my oyster. the impact of having a disability I didn’t realize the impact of having a disability and a chronic health condition would have on my life until I became an adult. It was like when I hit 18 the lights were cut down and when I turned 25, the lights were completely turned off. I began to experience the harsh reality of being an adult with a chronic health condition and disability and how many invisible barriers I had to face and overcome. I fell into what seemed like a mush pit of a grey area. I went from living life as a child with a chronic health condition to an adult fighting for basic rights such as access to health care and inclusion. Due to the rareness of my condition and many doctors who were able to treat me where outside of my healthcare plan and networks, so I was forced to pay a lot of out of pocket costs and travel out of state to find a doctor willing to treat me. I was denied many medically procedures by my insurance company because they did not recognize the type of condition and disability I had. Fighting for Health Insurance In one instance, I was sick and had to take a leave from my job and go on short-term disability. I fought them for almost a year in collecting the balance of my benefits. I went a year without any type of income or support because my state does not recognize my disability or rare disease. I did not qualify for a Medicaid wavier so even now currently, I do not have health coverage even though the chronic sickness and disability I have I was born with. Sick child vs. Sick Adult When I was a child all of the barriers that people with disabilities faced were oblivious to me because resources were so accessible. Doctor’s didn’t care what condition I had or what I looked like, the only thing that they saw was a child who was sick and had a disability. They clung to my needs and made sure everything was taken care. But like I said, that all changed the second I became an adult. My disability no longer became the center of focus but my functionality became the topic of conversation. Instead of people meeting me and wanting to get to know who I am and what I was capable of I was faced with awkward stares and ludicrous assumptions. I never so much in my life felt the need to prove my capability until I became an adult who just so happened to have a disability. why was society against me? From things like employment to accessing healthcare, it was all a struggle and it all seemed like a constant fight. I used to think “ why was society so much against me?” But then I realized that it wasn’t me so much society was against, but it was the perception of disability- that is people who are disabled can only do so much. Nevertheless, once I came to the realization that this perception was wrong, I knew it was my life’s goal to change how people see and relate to people with disabilities… people who are different. I took all the pain and suffering I endured and began to let it fuel my fire to making a difference for my community. To be the voice I knew my community needed. Taking on this challenge by no means had been easy but for me, it will always be worth it because it is so necessary! Rare Disease & Disabilities Advocate In 2016 I began to partner with organizations related to my specific medical condition and disability called the Children’s Craniofacial Association. I am currently apart of their speaker's bureau and speak to schools across my state and local regions to talk about acceptance and kindness. I also am a part of another organization called YARR (Young Adult Representative). This organization is funded and backed by the EveryLife Foundation, which is a global organization dedicated to research and advocacy for individuals apart of the Rare Disease community. I have made trips to Washington D.C. and advocated on Capitol Hill and have spoken with state Legislators and Representatives about Rare Disease issues. I also do some advocacy work within my own state of Georiga where I am staffed and partnered with different organizations such as the Georgia Council of Developmental Disabilities, and the GaLend Program via Georgia State University. These organizations and educational programs are all geared to providing education, accessible resources, and Leadership within the disability community in Georgia. I absolutely love the work that I do and I feel like I’m just getting started. Beauty with a Twist I’ve also created my own personal platform called Beauty with a Twist (www.beautywithatwist.org) because I saw how something was missing in our world. I needed to see more Difference. Inspired from my own personal journey in struggling with low-self esteem due to having a disability, I knew we needed more voices like mine. Voices that went against the standard of beauty, voices that appreciated the beauty in difference. From building this platform, I received a great response from individuals wanting their story to be told. However, I also noticed that although representation is important there was still so much work to be done. Disability voices were still being shut out from certain areas in our culture. I knew we had to change that. Now it is my goal through advocacy, education, and awareness to bring disability voices to the table and help make decisions that affect our lives.

Journey to Walking I was in a motorbike accident in January 2017. It was a head on collision with a lorry on a dual carriageway. My bike engine blew up, which instantly caused my double leg amputation. I've had 4 surgeries so far and hopefully, the last one will be this year. It has been an eventful journey so far both mentally and physically. I'm currently in the early stages of learning to walk on prosthetic limbs. It has to be one of the toughest things to accomplish in this life. Going through a life changing incident, it is so pleasant to have someone by your side. The love I share with Kayla makes this journey much easier. People stare and have so many questions. “Why is she with me?” “Must be hard being with someone in a wheelchair?” Etc. People need to understand that love is love and a person is a person. We all come with baggage and a person with a physical disability can’t just hide theirs. This relationship works for us because we make it work. To walk again is the main goal. It has been 2+ yrs with slow but beneficial progress. To be able to ride again would be a dream come true. Would love be an inspiration to anyone out there who’s going through some hardships in life? Take it easy and make the most out of this life we’ve all been given. Don’t let this life break you.

I Have Achondroplasia My name is Hielke (@kleine_knoalster), I am 19 years old and from the Netherlands. I have Achondroplasia which means that I'm only 1 meter 25 tall. Most of the time this handicap sucks but the most important thing is that I want to make the best of it. When I was born, I nearly didn't survive due to complications that occurred during my birth. But because of a medical miracle and great doctors, I survived everything and now my mission is to put my handicap on the map, to show everyone it isn't weird to look different than others. Presenter with Achondroplasia In my daily life I study, write stories about my handicap and I am a presenter for a local broadcaster in The Neterlands called RTV1. I do this work not only because it's my passion, but also to let people see that even though you've got a handicap you can do this sort of things. You can be a presenter without looking 'perfect' and be 1 meter 80 tall. If you want to follow my story take a look on my Facebook and Instagram page @Kleineknoalster. Show everyone the real you and say: THIS IS ME! My message to everyone is that you should not be let down by all those people who say that you're ugly, weird and cannot do anything but to show your strengths and talents because then you will have the last laugh.

Life as Me My name is Jacob Cooper. I’m 27 and I live in Ohio. I was born with a rare disease called Osteogenesis Imperfecta or brittle bones. I started painting at a very young age. Here is one of my paintings that I recently did!

Our Miracle Baby: Colton Colton was born at 3:08 PM on November 30, 2014, after a very hard labor with several health complications. We spent six days in the NICU, due to swelling of the brain and server jaundice levels. When we arrived home with our miracle, we quickly learned something was wrong. Colton was struggling to thrive and was unable to keep down any feeds. Colton was visiting with the pediatrician more often than other children his age. As a new parent, I didn't know what was happening. Colton Continues to Fight March 1st, 2015 changed my life forever. Colton stopped breathing during an aspiration event. Colton was rushed to the nearest hospital via ambulance, where he went without oxygen for over an hour. Nearly 8 hours later, we were MedVac to the closest children’s hospital, where Colton fought for his life in a coma. The prognosis was life-shattering... They did not expect Colton to pull through. All I had was hope and prayers from friends and family. By the miracle of prayer, Colton began to breathe over the intubation. After multiple EEGs, spinal testings and blood work, Colton was removed off of life support. He was then moved to the pediatric floor for a few short days and then to a rehab facility, where he spent his days doing physical, occupational and speech therapy. We were learning various activities like sucking and swallowing for feeding and how to roll over! He was placed with an NG tube to assist with nutrition. "The Diagnosis was Hypoxic Ischemic Encephalopathy (HIE) & Cerebral Palsy" Colton was diagnosed with Hypoxic Ischemic Encephalopathy (HIE) and later Cerebral Palsy. Due to the damage to his brain, he suffers from hypertonia and spasticity — which is the tightness in the muscles of the legs, hips, and pelvis. I chose to do everything in my power to make sure he was as comfortable as possible. We have done bi-weekly Occupational and Physical therapies, intensive programs including CME and neuro suit, stretching programs, eye patching, some medications, restricted diets, essential oils and supplements, infant massage, AFO bracing, use of a collection of equipment and most importantly... mommies creative mind - making just about anything into a therapy activity! ...All while trying to let him enjoy his childhood. My heart wrenches a little every time he struggles to do things that we take for granted. If I could give him my legs, I would. As a parent, there is nothing more devastating than watching your child suffer or struggle. Through it all, Colton continues to thrive and learn so much. He is my inspiration to be better and I am so proud of everything he has achieved thus far! Advocating for Colton's Mission Over the years, I have become a master at researching and advocating what is best for Colton. We are currently looking into adding horse therapy into our routine and are fundraising for the chance of a lifetime - SDR surgery. This surgery would be life-changing for Colton. Selective dorsal rhizotomy is a surgical procedure performed on the lower spinal cord. The nerves are separated then identified via electrical stimulation. Following identification, certain sensory nerve fibers in the spinal cord are cut. This will prevent his muscles from becoming tight, it's almost like a new pair of legs! Colton’s spasticity is already high and can become tighter as he grows. Often people experience joints popping out of place due to their spasticity, as well as spasms and severe muscle aches, which are all extremely painful. There are medications, but a lifetime of strong pain meds and muscle relaxers wouldn't be good for him. This surgery is a permanent spasticity reducer! If we can fundraise the amount needed for surgery, we have chosen Dr. Parks at the St. Louis Children's Hospital to perform the surgery! Please help make this dream a reality for our family by share, prayer and donations! https://inktothepeople.com/breakingfreefromspasticity All proceeds will be used towards surgery, travel and post care. Unfortunately, this surgery is not cheap and there will be a long road of recovery thereafter. Our current goal is $60,000. I want to thank you all for joining in and supporting us through the ups and downs. I don't know what the future holds, but I know it isn't holding us down!

There is no perfect Hi! My name is Marie Updike from "My life in a Nutshell." I was born with fetal alcohol syndrome, and my arms ended up deformed from it. My mom died when I was six years old, and she was very unloving. I was dealing with depression and anxiety at an early age. As I grew older, the emotional pain was hard to deal with. I became addicted to drugs and alcohol and tried to commit suicide five times from the overwhelming emotional pain I was going through. At the age of thirty, I got a second chance at life and made the move to Denver, Colorado where I made some amazing friends that helped me turn my life around with love and support! I was put into a wonderful recovery center where today I am three years clean today! September 11, 2016, I gave birth and became a single mom to a beautiful baby boy who fills my heart with so much joy! On top of being a mom and living this amazing sober life, seven months ago I wrote a book about my journey and finally self-published it where it’s sold over 500 copies! My goal after recovery was to inspire and give hope to others! Make them laugh and give them a sense of worthiness. Bottom line. You are not perfect but you are human and humans are allowed to get a second chance as I did!!

"Empowering Women Supporting Their Partners In Chairs" When we began a small support group to reach out to Wives And Girlfriends who have partners with spinal cord injuries, we had no idea that the group would expand to reach all corners of the globe. Both of us have partners who are quadriplegics and began our "new normal" lives after our partner's injuries - all alone. We felt that although we had support in our family and friends, no one truly understood what we were going through with our partners. After a devastating life-changing injury, isolation can creep in - and we couldn't find much support in our community. A few years after our partner's injuries, we met by chance over Instagram. We soon realized we lived just blocks away from one another in Vancouver, BC, Canada. We started meeting for coffees and yoga and bonded over our similar lifestyle of being caregivers AND lovers to our injured partners. We knew our connection was life-changing and vowed to offer support to other women in our shoes by creating an Instagram page in 2017. The group has since expanded to have 11 WAGS Ambassadors - women from different parts of the world who are the main points of contact for WAGS of SCI in their cities. The group also has a new website, private Facebook discussion group and page, and we also recently partnered with the Christopher and Dana Reeve Foundation to create and moderate their own WAGS of SCI Discussion Forum on their Reeve Connect platform. The future goals for the group are to become an official foundation, functioning to help other WAGS of SCI and couples go on accessible trips away and enjoy date nights/self-care without a financial or organizational burden. The WAGS of SCI believe in LOVE - love that conquers all, and will not stop raising awareness and breaking down barriers in the disabled community.

fighting till the beginning You look at me differently, as if I lost my mind, you treat me like my dog. You judge me without knowing me, like a fucking object. For all the time I had to be at rest? Because of my change in the look? To tell the truth when it has to be said? If I could not do anything for myself at that time, how could I do something for others? I should not interrupt the healing process ... Do not criticize me without knowing my history, without suffering or living, you would be surprised what I had to endure all this time. Having to wait without knowing dates or sentencing papers increases my anxiety. How will I face everything only if nothing goes well? I always knew how to take care of myself, working or whatever ... Until the day we were all twisted. Because it was not just me who changed his life. It was everyone, my parents, my brother, family, friends and acquaintances ... IT CHANGED EVERYBODY The step and the necessary turn to move forward and start living from scratch without ties is near or I hope so. To be able to face myself, my goals and barriers before society. It's all in the hands of the judge, just wait for sentence. "FOR ME, FOR WHOM HE BELIEVES AND FOR WHOM NOT" I won’t get my previous life back but I’m ready to begin the new one!