Created by Survivors of Violence with Disabilities for People with Disabilities & Our Allies
Personal Stories
This category includes posts by disability advocates (self-advocates, providers, and caregivers) whose stories lend additional perspectives on education, advocacy, and disability justice. All stories will include content warnings.
This painting depicts someone with a disability, jumping from brick to brick defying their physical limitations, and overcoming the odds that life throws at them.
ABOUT THE AUTHOR: Johnson Simon
I have always been interested in body movement and when an opportunity was presented to me to attend a dance recital exhibition nine years ago on the Western Michigan University campus, I was excited to attend. Viewing the dancers and their freedom of movement inspired me to display movement in my painting. I was stimulated to create my first dance focused expressionistic painting. Dancing is to me, the art of moving lightly and quickly with the skill of communicating my emotion. As someone with a disability, movement impacts me on a daily basis. In order to help gain more knowledge of motion and movement, I used several sources of movement for research and to enhance ideas. I watch several videos of dancing to help in determining the type of movement I wanted to present in my painting. I studied the movement of people: walking, running, swimming, and sky diving. I then had my own walking and stepping up and down stairways videotaped. I discovered that my walking has a rhythm to it. To further enhance my study of movement I attended several dancing classes to sketch the dancer’s movements for effect. My painting is a representation of me dancing. I am able to make broad and sweeping motions with my paint brush and transfer that motion and feeling of movement onto the canvas to express myself. In my artistic work, I am able to move freely about without limitations. I use bright colors to represent the body movement throughout the surface.
My artwork is a way for me to express or transfer how I would move freely and uninterrupted. I can run, walk, jump, and I can dance without being bound to limitations when I paint. Zm and draw. I believe the paint brush is an extension of me and represents my idea of movement on canvas.
I was born with osteogenesis imperfecta (OI), a rare genetic condition that causes my bones to break easily. My parents didn’t know until I was around 9 months old when I broke my collar bone trying to roll over. Starting from a very young age, I was delayed in my gross motor skills, and my parents were originally told I wouldn’t be able to walk. However, I did learn to walk at 3 years old. Growing up and in school, I mostly used a walker and wheelchair to get around but remained as independent as I could.
As I got older, my parents instilled the importance of advocacy and building a community. Throughout all my grade school years I had several close friends that I could always count on. My parents mirrored the importance of building a community with so many friends that were practically family. The people I could also count on when I needed them.
When I went to college, my disability became a little bit more front and center. I went to school in Cincinnati, possibly the hilliest place in the Midwest I could have chosen. I only knew a couple of people and so it took me some time to find my people – who were willing to help me on occasion (especially up those hills) and reteach individuals about who I am, beyond the disability. I did though find my community and had people I knew I could count on if something happened.
What nobody tells you is how challenging it is to meet people once you are out of school – disability or no disability.
After undergrad, I decided to move to the Washington, DC area for a job. I packed up my things and moved, knowing nobody. I didn’t realize how scary that would be until after my parents left and it was just me and my new dog that I “accidentally” found at the Humane Society the week prior. Since I knew nobody, I figured the best way to meet people was through dating. I went on a lot of dates and eventually met my now husband, who also happens to have a disability. One of the stark differences we found is the difference in our idea of community. It was not something his family necessarily prioritized, while mine did. But, over the years we have learned to develop our own ideas of what community looks like for each of us and for our family. There is no one way to build a community. We took pieces of what we knew, combining it together to make our version of community beautiful and unique.
Fast forward to a baby, COVID-19, and a move to Indiana later and I cannot believe the community we have built. If you had asked me six months ago if we had found our people in Indiana yet, I maybe would have shrugged it off or said not really, however I have been proven very wrong, for the better. Community might not be there every day, but when it shows up it’s often very surprising.
In January, I had a fall that resulted in my first broken leg since I was in eighth grade. As a type-A planner personality, I panicked as to what we were going to do. Not only for me, but for my husband, who is still learning to drive, and our daughter. Life does not stop when you have an injury as an adult. However, in a state of panic I asked my sister to reach out to everyone I could think of for help. By the time I was out of surgery, our entire “help” spreadsheet was filled, and I had several text messages with people asking how else they could be there. From old and new friends, neighbors, and people I barely knew from our daughter’s daycare, we had everything covered and then some. I could not believe the amount of support people were willing to provide if I just asked.
It is hard to ask for help, especially as a person with a disability, it often feels like a burden. But that is what community is; helping each other. I know one day, someone that has helped me is going to need support and I can guarantee I’ll be right there when they need me. We all have our seasons and life ebbs and flows, but one thing can always remain constant and that is community.
:ABOUT THE AUTHOR: Jessica Minor
Jessica Minor was born with osteogenesis imperfecta. She was born and raised in Indiana, but previously resided in Maryland for over eight years until 2021. She lives with her husband, 3-year-old daughter, and 2 dogs. Since moving back to Indiana, she has worked as Director of Community Engagement at accessABILITY, Center for Independent Living. In her role, she oversees all outreach initiatives, fundraising efforts, and disability justice trainings where she works with organizations and companies on how to be more inclusive to the disability community. Jessica is also on the Board of Directors at Meals on Wheels of Central Indiana and is a member of the Interagency Coordinating Council for the First Steps program.
While in Maryland, she received her Master’s Degree in Public Policy and worked in disability and public health policy. She was also on the Board of Directors of Independence NOW, a Center for Independent Living, and Hearts and Homes for Youth.
Jessica loves connecting with the Greater Indianapolis community, building connections, and helping bridge the gap for people living with disabilities.
Image Description: Jessica is a white female with wavy brown hair to her shoulders and is smiling. She is wearing a dark blue shirt with black jacket.
I grew up in an era wherein the technologies most of us take for granted today were unheard of. In some respects, life was much simpler. There were no menu-driven touch screens. Appliances and electronics were operated by individual buttons and controls easily identified by touch. At the opposite end of that spectrum, however, were some insurmountable barriers to the independence I longed for. As a person who is blind, there was no way to proofread my typewritten work, read my personal printed mail, or shop for groceries without assistance.
Fast forward 40 plus years, to a world in which technology and the ability to use it is a necessity. Most all of us use the internet and our smart phones on a daily basis without a second thought. We use these tools to communicate with one another, to pay our bills, track our banking information, do our shopping and fill out all manner of forms and applications; the list is endless. Though the overall convenience of 21st century technology is global, the freedom and independence these advancements have provided to the blind and others with disabilities is something I, in my youth, could have never imagined.
We are now able to proofread our own work via screen reading software, and identify our own printed materials. There are phone applications which will identify colors and currency and provide orientation and navigational information for independent travel. Clearly we have come a long way. We cannot afford to celebrate these advances, however, without also recognizing the potential dangers posed by their rapid evolution. While 21st century technology has opened many doors, it also has the power to lock us out if we are not careful. For example, it is extremely difficult today to find an appliance, be it a printer, a dishwasher, or thermostat just to name a few, with individual controls not hidden behind a touch screen. Sometimes you can create a “quick fix” by pasting a marker or a braille label on the screen. However, more and more of these designs are going to multifunction, menu driven controls.
It is not that the technology needed to make these devices accessible is not available. Companies such as Apple have proven that. Apple has built out of the box accessibility directly into its original devices. Sadly, most companies don’t stop to consider the needs of people with disabilities. They are just so far removed from our world that accessibility never crosses their minds and thus, is not a part of their proverbial game plan.
Still other companies would like to assure accessibility, but they just don’t have a clear understanding of what it means to be fully accessible. There are no published rules or guidelines as to how to implement such a design. It is this lack of direction which has prompted the National Federation of the Blind to promote the passage of the Websites and Software Accessibilities Act.
This proposed piece of legislation will direct the Department of Justice to set in place some clear cut rules for website and software design and provide technical assistance to companies as they implement these changes. How liberating it would be to access a website for the first time, and not have a question in the back of one’s mind as to how accessible it will or will not be! We need to get this piece of legislation passed, and we are well on our way to doing so .
This is just one example of the need for and power of advocacy within the disability community. Another might be the advocacy for an accessible absentee ballot for those unable to make it to the polls. There are many others which could be cited. We need to ban together and make our voices heard; advocating for a world in which there is truly “justice for all.”
So how do we do this? The most important and likely most obvious first step is to register and cast our votes. Voting for elected officials will give us the privilege to speak out against injustice. We then need to work together with all of our brothers and sisters in the disabled community to identify the barriers to our independence and join together to eliminate them.
It is so easy to become complacent; to feel that our voices won’t make a difference. We must remember however that there is power in numbers. A single voice might not be enough to bring about a fully accessible world, but if we join together in one mighty harmonious chorus, we will make a difference. It is time for us to stand up and be counted, continuing our quest for equity, and advocating as only we can.
Diane Graves entered the disability community at two years of age, after losing her vision to Retinoblastoma—a genetic cancer of the retina. Thus, it was at an early age that she became familiar with the obstacles posed solely by discrimination, and when civil rights became her passion.
When she was hired by the Indiana Civil Rights Commission in the spring of 1990, she felt privileged to have been chosen to represent the disability community, and other minorities, in their quest to ensure equality.
Since coming to the Commission as its front desk receptionist, she has advanced, and is now working as a mediator for the agency. She has also obtained a bachelor’s degree in Organizational Communication from Kaplan University and is currently working towards her Master’s Degree in Social Work. She has serves in various offices and leadership roles in the National Federation of the Blind of Indiana, and has served on the Governor’s Planning Council for People with Disabilities.
When I was in fifth grade my parents enrolled me in a Karate school so that I could learn how to defend myself. I was a small kid with a quick temper who kept getting into fights he couldn’t finish. For seven years of my youth, I spent most afternoons reciting a creed to rely on strength of the body, knowledge of the mind, and honesty of the heart to “win the battle within myself” and defend others, then developed physical and mental skills that built on those concepts. I achieved the rank of first-degree black-belt before I turned sixteen.
While I did learn to defend myself, what I really learned was how not to get into fights. My life transitioned from youth into adulthood as I moved away from home for education and career. A decade later, my karate belts were nice memorabilia of my youth to decorate my walls. It was always something I thought I would get back to when I found the time.
During my commute home from work, almost eighteen years ago, I was trapped in a burning Wrangler after a car accident. Six weeks later I awoke to learn that both of my legs had been amputated above each knee.
I remember laying in the burn unit, thinking about my youth and the effort I had put in to learning Shorei-Goju Ryu. Something valuable that I had let slip away as my career took prominence in my life but had always intended to practice again. This was now gone…taken with my legs, and the effort to learn Karate in my youth now felt wasted.
As I learned to walk on prostheses, my Physical Therapist was impressed by my balance and body awareness. She attributed this to my martial arts background. It was a bittersweet benefit left over from my training in my youth, but it relieved a little of the loss.
Adapting to life as a Person with Disabilities is hard…it’s the hardest thing that I have ever had to do. Beyond the physical actions of fighting, a lot of what I learned from Karate was about self-discipline, motivation, determination, and resiliency which helped me adjust to living life using a wheelchair and prosthetics with crutches. I was using what I had learned to reach a black-belt rank in Shorei-Goju Ryu, every day now, to deal with the emotional and physical trauma of life with a disability.
These skills, learned in my youth, helped me to access the supports needed to define and achieve an independent lifestyle as a Person with a Disability. The time spent working with a Sensei (Teacher) and other students had taught me to be open to peer support. The self-discipline, determination, and confidence developed to earn my black-belt now supported the ability to advocate for myself and others; in efforts to speak up for my own rights, and to raise Disability Inclusion and Equity through increased Accessibility at a social level, which leads to a Diverse sense of Belonging. Resiliency fed a belief that I could live an independent lifestyle and led me to define what that meant and how that would look, and to ask for the help needed to make modifications and access the resources (from disability support organizations to crowdfunding) for the assistive technology, training, and adaptations to support my vision of independence.
Many aspects of the Martial Arts have benefits for People with Disabilities. Reframing your disabilities as part of your healthy state, not something working against it, Karate provides accessible and adaptable exercise that helps develop confidence, endurance, and self-awareness. Most importantly, by practicing and adapting Shorei-Goju Ryu, I have redefined my perceptions of a healthy body, mind, and spirit in a way that is inclusive of my disabilities, and I have an adaptive avenue to further develop those aspects of life.
Karate can be adapted for any person with any disability, customized to meet their goals, and modified as the individual’s skills progress. Learning Martial Arts can help you face life with adaptability and resiliency, both of which are vital aspects of the disability experience. During the COVID lockdowns, I virtually assisted a young woman with Down Syndrome doing her senior project on Martial Arts. I demonstrated strikes (punches & blocks) from a wheelchair in Indiana, and she demonstrated kicks, stances, and movement from a classroom in Georgia. I couldn’t remember any of the Katas (choreographed forms for practice and meditation), but I could help her put the basics together. When we finished, I found myself asking the question “how do I really modify this for my 47-year-old bi-lateral above knee amputee body?”
(Image Descriptions: The image on the left shows Jeremy Warriner a white man in his mid-forties with reddish-brown hair and a trimmed mustache and goatee, in a grassy yard under the shade of trees on a sunny day with a cloudy blue sky. He is centered in the picture standing on his left prosthetic leg, with two forearm crutches planted on the ground in front of him at opposite angles, he is leaning forward and to his left side as he kicks to the right side with his right prosthetic leg. He is wearing a white gi top (karate tunic), a long fabric black belt knotted at the waist, and black shorts. His prosthetic knees and legs are a shiny silver aluminum color with ball shaped “ankles” above hiking boots on his prosthetic feet. There is a rope hammock to his left and tall trees in front of a blue house with white windows & doors in the background.
The image on the right shows Jeremy Warriner sitting in his purple rigid frame wheelchair without his prosthetic legs, on a wooden deck outside of a blue house with green trim, white windows & French doors on his right. Jeremy is wearing a black gi (karate uniform) with a long fabric black belt knotted at his waist. The two ends of the belt dangle between his thighs and there is a red stripe near the right tip of the belt indicating the first black-belt rank. He is facing forward and centered in the bottom half of the picture, with his left hand resting on the armrest above the left wheel, knuckles against his left flank, elbow bent out to his left side. His right arm is relaxed with his right hand resting on the distal end of his residual right leg. The empty lower legs of his black pants are folded underneath him, exposing the empty footrest, Velcro straps, a pocket, a small circular container, and a cupholder attached to his seat and frame. There is a tablet with a red keyboard and a legal note pad with pen on a small glass table to his left, with a power strip on the deck in front of the table. Behind him, a ramp with a railing extends down to a stone path with grass and trees in the background. Jeremy is smiling at the camera, his long reddish-brown hair falls loose behind his shoulders, and his mustache and goatee are trimmed short. Sunlight filters through the leaves of a tree above him, casting a light shade on the deck).
ABOUT THE AUTHOR: Jeremy Warriner
Whether walking on next-generation prosthetic legs or utilizing a wheelchair, Jeremy is an active member of his community, founder of Walking Spirit & Spirit Therapies, LLC, charter member of the international Rotary Club for World Disability Advocates, and a devoted husband & stepfather. His passion is enhancing our communities through providing assessments, consulting, training and support on Accessible Diversity, Equity, Inclusion, and Belonging from a Disability Lens. Jeremy’s current projects include adapting Karate to his disability, co-hosting the international podcast “World Disability Matters”, facilitating the virtual Disabilities & Conditions of Aging Network in central Indiana, and writing a book about his experiences adapting to life as a bilateral above knee amputee and burn survivor. He can be reached through his website at https://www.walkingspirit.org or by email at jeremy@walkingspirit.org.
