Four Ways to Become an Advocate for Disability and for Yourself
Authored by BraunAbility Contributor Madeline Delp
Throughout history, there has been one overwhelming fear that has consumed people in every age: the fear of people who are different.
For most cultures of the past, a small voice whispered inside: what if they are a threat to my way of life? What if they are a threat to my safety? If they are not like me, then they must be doing things that are immoral or wrong - right?
For those with disabilities, this meant a reality that was not so kind.
- Middle Ages - Doctors and leaders proclaimed that witchcraft and demonic forces were surely the cause of disabilities. Exorcisms were practiced to “heal” the disabled of their sins.
- 1600’s - The new name for those with disabilities became “Deviants”. This population was segregated from society and trapped inside hospitals, often shackled to walls.
- 1930’s - The USA, Germany and Britain demand forced sterilizations of those with disabilities so that the “sickness” does not spread.
Because of fear, people over the course of history have done atrocious acts in order to punish others for their differences. It was only the brave who acknowledged that the system was flawed - that humans, no matter what their differences, deserved the same rights as everyone else. Some were ridiculed, some were banished, some were killed...but some succeeded. Little did they know, each act of rebellion for a better world would lead to a society that was much different than their own.
Fast forward to the future...
We are in an unprecedented time where more and more people with disabilities are being recognized as equals in society. Conditions and mindsets changed, new generations were raised to be accepting of all differences, and our nation passed its first-ever law for the national protection and inclusion of those with disabilities.
As we stand together to celebrate the 30th anniversary for the Americans with Disabilities Act, we need to remember where we came from and hold firm to where we want to go. We must continue to push toward greater equality and inclusion for people with disabilities and honor the sacrifices of those before us by being passionate advocates for change.
My name is Madeline Delp and I am a full-time wheelchair user. I believe that practices and mindsets from the past should never be repeated and we must do everything we can to fight for a better future. In order to inspire you kick start the next 30 years of advocacy, I created a list of four ways you can challenge yourself to be an advocate for the rights of those with disabilities by sharing stories from my personal journey. Let’s get ready to change the world!
Step One: Use Your Challenges as Strengths
After my spinal cord injury at ten years old, life took quite a drastic change. The life I once knew that was open and free before, now seemed to be completely out of my reach. I could barely get into my house with my wheelchair, I couldn’t go to the same school because it was too inaccessible, and the vast difference in how people treated me was baffling. My mom was a single mother and we didn’t have much, but we fought to survive through the new waves of obstacles that seemed to ever flow our way. I frequently began to ask myself, why me?
Why me? As I scooted up the flight of stairs every night to get to my bathroom. Why was I the child that had to lose her ability to walk?
Why me? As my high school history teacher had to carry me down the stairs one day when the stair-lift broke (in a horribly awkward way) with the whole school watching. Why was I the one who always had to be embarrassed?
Why me? As I tried to find a bathroom at prom and got my friends to try to squeeze me in a small bathroom stall - where half of my dress fell into the toilet and I didn’t even make it in time (everyone one else with a spastic bladder understands!) Why can’t I be cool like everyone else?
The “why me’s” of my life began to come to a sudden halt when I learned a big secret about the meaning of obstacles in life. My perspective had been entirely wrong. I wasn’t the victim of anything - I was being handed a gift and I didn’t even know it. It all came clear to me when I heard a quote that changed my life:
“Where there is no struggle, there is no strength.”
Let me explain...
Imagine two men are entering the military. One man is only going because he feels pressure from his father. His goal is to get the easiest job possible! The other man has a burning desire to serve others and protect his country. He decides to become a Marine. Comparatively, the two men’s trainings are very different. One goes through basic training, while the other is pushed physically, mentally and emotionally to his limits.
What do the greater obstacles for the marine’s training represent?
They represent mental and physical strength. They represent the ability to save lives, to create peace between countries, and to preserve individual liberties. These obstacles are the reason one man has the ability to be on the front lines, thriving with the passion of purpose, while the other man feels complacent, searching for meaning in his life.
I don’t want you to just strive for an easy life. I want you to strive for a life of purpose and passion. A life that is filled with joy while serving others.
This comes by flipping your perspective from being the victim, to being the champion. Your challenges do not own you; they are simply tools required to become the person that you were meant to be. They are the gateway to making your mark on the world!
It is easy to compare your life to others and feel like your circumstances are unfair. Remember that they do not have the same journey as you - you are running your own race!
This is an important first step when working toward becoming an advocate for change.
Being revolutionary doesn’t come from a place of bitterness, it comes from a place of strength and confidence. When you are aiming to inspire and motivate others, you will do so infinitely better when you show them how you have used your hardships to your advantage and have found creative solutions. You want to be a model of someone who takes self-responsibility, one who doesn’t make excuses and knows that they alone are responsible for the results in their life!
CHALLENGE: Write down all the obstacles you have faced in your life. Find all the ways that they have served you by making you stronger, teaching you important lessons or leading you toward something good.
Step Two: Become a Fear-Chaser
In order to serve others, we have to first become our strongest selves. I believe that this comes by putting ourselves in situations FAR out of our comfort zone that force us to grow. Here is the story of how I learned to become a fear-chaser.
Several years ago, I was going through a very rough time in my personal life. I was beginning to fall into a pattern of depression and anxiety, one that took me to the ER several times because of severe panic attacks. I didn’t know how in the world I could possibly get my way out of the mental blockades I created for myself. I felt like I was surrounded in a world of fear: fear of failure, fear of not being able to live my life because of my disability, and fear of what people would think of me.
One night I was lying in bed at 2 in the morning and I devised a plan. I was going to do something that forced me to be bold - something that would help me shake all my fears away. That night I planned an adventure that would end up changing my life forever.
The adventure was this: I had to drive around the entire USA over a period of two months. The catch was that in almost every state I had to do something that scared me.
Barely two months later, I was headed out on my adventure. The drive alone was an epic challenge. As someone who had only driven about 3 hours away from home, driving for 10 and 12 hours at a time was completely out of my comfort zone and took a level of stamina that I didn’t know I had.
The fear-chasing adventures were just as challenging. I found myself jumping out of a plane, going 200 feet underground to explore the largest cave in the world, rappelling up the side of a mountain, BASE jumping off the side of a bridge, going up the side of a volcano, and skiing on a sit-ski down a mountain.
I began to see a side of myself that I didn’t know existed. I found a confidence and boldness begin to develop inside me that changed the negative beliefs I had about myself.
One of the adventures I went on that made me by far the most terrified was shark cage diving. I had to beg the owner to let me try it out, because he was nervous my injury would interfere with my ability to swim. I assured him I could swim with no problems! When we got on the boat, I noticed that there were eight of us jumping in, but only one small cage. As I began to do the math, it quickly occurred to me that I had boarded my way to a cage-free shark diving experience. The captain began throwing chum in the water and the sharks quickly started to circle. I will never forget what it felt like to hear him say, “Oh they must be hungry today!” With my heart pounding, I jumped into the ocean and prepared to look my fear directly in the face.
I have jumped out of a plane four times now, but nothing compares to the feeling of having 15 sharks swimming around you. The dive went well at first, but it took a turn when one shark took a particular interest in me. It kept swimming up directly toward me and taking sharp turns at the last minute. The last time, it headed toward me at a quicker pace. Right before it reached me, one of the safety divers on the team literally had to grab the shark and toss it the other way! Completely rattled, I swam toward the boat as fast as I could. I had looked my fear in the face...but didn’t have to necessarily stay there until it bit me.
You might ask me, “Madeline, are you telling me that I have to enter shark infested waters in order to become a better me?”
I want you to venture into the waters of the unknown. I want you to face your fear head on, with a will to become stronger. This is like the experience of Marines who put themselves in difficult situations so that they can become stronger versions of themselves.
Testing out your abilities in new areas helps you to find a new you: it breaks down negative conditioning you have about yourself and rebuilds an attitude of courage, independence and bravery. You begin to see yourself in a new light and feel strong enough to tackle goals you might have thought were out of your reach!
I have found this step to help immensely helpful with my journey toward advocacy. In order to create change in this world, you need to acquire the skills of courage and persistence. Like those who came before us, we will have to be brave when standing up for what is right and not back down when others try to stop us. Become a fear-chaser so when the time comes to be valiant, you no longer feel afraid.
CHALLENGE: Come up with your own version of a “fear-chaser”. What could you do that scares you that would help you to become braver in your personal and professional life?
Step Three - Find Your Niche
One of the things people frequently ask me is, how can I actually make a difference in the world of disability rights when there is so much to do? The complex, multi-faceted world of inclusion is one that takes many voices on many different platforms in order to move forward, and it can be overwhelming for someone who is just beginning their journey of advocacy.
My start in the advocacy world was anything but planned. For years I felt shrouded in self-doubt and insecurity because of my injury, and I came to the point where I knew things had to change. I had already seen the power of the first fear-chaser in my life (studying abroad in Germany), and I wanted to pursue something that would improve my self-confidence and ability to speak in front of crowds. As someone who was quite shy, this was an enormous fear of mine that I knew I needed to face head on.
So, I did something that was completely and utterly out of my comfort zone: I competed in Ms. Wheelchair N.C.
Much to my surprise, I won the competition! This was a catalyst to a journey I never in my wildest dreams would have expected. It led me to Ms. Wheelchair USA, a competition that I also won, and gave me the opportunity to speak all around the country with a newfound confidence and passion to be an advocate for people with disabilities. My inbox filled up with messages from people who wanted my help on various advocacy projects. I did as many as I could, but I didn’t know what my true mission was.
What should I work on to truly make a difference?
The answer came when a little girl in a wheelchair rolled up to me at an event and asked a very powerful question. She said, do you think that someone who looks like you and me could ever be considered beautiful enough to go to Miss USA? I truly didn’t know what to say. Confidence issues from my disability were something that I had struggled with for years, and I felt unable to give this little girl an answer that in my heart I believed was true.
The question plagued me for months. How could I show that little girl and others around the world that they were in fact beautiful just the way they were? I had to find a platform to show them that their physical differences didn’t define them and that they had the right to confidently display their true beauty to the world.
I had to compete in Miss North Carolina USA.
This terrified me. I didn’t know anything about that kind of pageantry (a challenge much different than disability pageants) and I knew I was facing an uphill battle considering that I would be the first girl in a wheelchair to compete. That year at the Miss N.C. USA competition, I ended up placing Top 15 - a feat that I was proud of, but knew I could still do better. The next year when I competed, I ramped up my message even further. I worked to show girls that their beauty and confidence came from the inside. I worked to create inspirational campaigns that showed that women and men with disabilities should be included more in the modeling, television and beauty industry. I starred in music videos, I did photoshoots to promote disability inclusion, and even toured the country again to speak to schools and organizations about true beauty. That year at the pageant, I did something never before accomplished - I was the first girl in a wheelchair to place Top Ten in a Miss USA state pageant.
When I woke up the next morning, the story had blown up. I was being interviewed by Entertainment Tonight, People magazine, the NY Post, Glamour magazine and countless others! The story even went international, and I started seeing articles about me in languages that I didn’t even know existed. In all the articles (at least the ones I could read!) the messaging was always the same: girl in wheelchair works to promote inclusive beauty.
This taught me an extremely important lesson. When I was vague on what I was fighting for and simply promoted “disability rights”, I felt like my voice was barely heard. I wasn’t able to get traction on my call for equality. It was when I developed razor sharp focus and found my niche that my message echoed literally around the world.
So, my advice is this, try to go deep, not wide.
Find the thing that you are truly passionate about and become an expert in that area of focus. As an advocate, you want to develop the specific area of expertise you are known for. Make this the focus of your cry for action on social media, do podcasts about it, create YouTube videos, use this topic as a tool to get publicity, partner with like-minded companies, work the pavement in rallies for it, be in governmental buildings fighting for it, host support groups about it - you get the picture!
When you find your niche in the advocacy community, I promise that it will help to skyrocket your results and will make you a powerhouse when fighting for change!
CHALLENGE: What is your why? What do you want to accomplish with your life? Use these answers to create a niche focus in advocacy that will work in harmony with your life purpose.
Step Four: Build Your Tribe
I have a confession. For the first 7 to 8 years after my injury, I wasn’t simply someone with low confidence who was scared to enter the advocacy world, I was actually someone who avoided it at all costs. Although I had moved on from my injury and learned to adapt to it, the last thing I wanted to do was be reminded of it. I thought that diving into the world of “inclusion for people with disabilities” would make me face truths about my life that I didn’t want to think about, and it would make me feel like an outsider trying to get others to have pity on me. I had felt like that for way too long, and I was trying to get away from it - not put myself smack dab in situations that exacerbated it.
It wasn’t until I landed on the wheelchair pageant scene that I quickly realized the error of my ways. Up until that point, I had had little contact with other wheelchair users. I wasn’t a part of any clubs, support groups, or online groups. In fact, I didn’t even realize how prolific these types of things really were. It was the day I found myself in banquet hall full of other women in wheelchairs that my eyes opened in amazement.
During the week we were together, I met women with all kinds of disabilities, of all different ages, from all over the USA and managed to connect with each one of them in a unique way. I realized how much there was to learn from them and exactly how their presence was providing the kind of healing and encouragement I had needed for so long.
It was through those very connections that I was able to jumpstart a passion project I had been dreaming to embark on for years.
Once I heard about the lack of access people with disabilities in other countries have to medical equipment, my dream had become to deliver wheelchairs around the world. It was at one of the pageants that I met a girl who had experience on a wheelchair delivery in Puerto Rico and she talked about all that was required to make it happen. This encouraged me to believe that maybe, just maybe, my dream wasn’t that crazy after all.
For the next few years I worked with various other girls that I had made connections with to make my dream a reality. I officially founded a nonprofit organization called Live Boundless, began raising money through fundraisers with the help of my amazing friends, and established delivery groups to go to Asia and South America.
As of last year, we have delivered over 300 wheelchairs around the world!
I know without a shadow of a doubt that this couldn’t have happened without the connections I made. For so many years I had tried to be the loner who could handle everything on her own, while all along what I truly needed was a connection with others. This is what brought me true healing, while giving me the opportunity to make a huge impact in the lives of others with disabilities in countries around the world.
This is my final challenge for you in your journey to becoming an advocate. You can’t save the world alone: you have to have a team of people behind you, pushing and encouraging you along the way. Three very important factors I look for when building my advocacy teams are:
- How can they supplement my personal weaknesses?
- What kind of vital experience or knowledge can they bring to the table?
- Who can I build a mutual connection with based on similar experiences?
It can sometimes be hard in this online world to put yourself out there and meet new people. A few places that I have found to be wonderful opportunities to build my circle of connections are: nonprofit organizations, networking conferences, disability conferences, schools, rehab centers, support groups, vocational rehab centers, adaptive sport groups, and online groups of your specific disability (i.e. spinal cord injury groups)!
If the people who fought for the Americans with Disabilities Act taught us anything, it was that they had to work together to create change that would help the lives of Americans for generations to come. We have to follow in their footsteps by uniting as one in order to continue improving the lives of people with disabilities here in the USA and around the world!
CHALLENGE: Contact a person, group or event coordinator who you think could be a part of your tribe and set up a call, meeting or attend an event. If you don’t hear back, continue on to the next person until you find the right advocacy partners for you!
As Gandhi said, be the change you wish to see in the world. Remember that you have the power to change the course of history for human rights!
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