One of the best-known sentences in the English language is the second sentence in the Declaration of Independence. You know, the one that begins,
“We hold these truths to be self-evident…”.
Let me use these most potent and consequential words in American History to address the freedom that this declaration was meant to address. The Declaration justified the independence of the United States from King George’s rule. It spoke of natural and legal rights and has since become a statement on human rights. I will use the human rights aspect to bring attention to one group of citizens yet to experience real freedom. I am referring to the citizens of the United States of America who are entirely dependent on a wheelchair.
“I hold these truths to be self-evident, that all people with declared disabilities are not created equal. That the term “disability” was not endowed by our creator with unalienable rights. I do believe that all people diagnosed with any kind of inability to function in what is considered “neurotypical” or “physically typical” are not created equal.” – René Steelman
Let me introduce you to an outstanding citizen, community advocate, mother, and someone with first-hand knowledge of the lack of freedom experienced by wheelchair dependent individuals. I will change her name to protect her privacy. However, I desire to shout her story to the world as an example of what true heroism is and means.
My friend grew up in Portland, Oregon. Though she only had 3 biological siblings, her family welcomed numerous foster children and families into their home. She refers to them as brothers and sisters. One of the families that lived in her modest house was a group of five children who were being raised by a single father. When Dad was deployed to Vietnam, the mother was no longer in the picture, so the kids lived with my friend’s family. She remembers those days with great affection.
When I asked her if it was hard to have so many children come and go or if it took away from her feeling important, she replied, “Heck no, I loved it. We each had a purpose. We felt needed, so there was no need to be needy.” I love that explanation. She speaks with joy about the responsibility they each had for each other and the running of the home. They had a purpose. These experiences prepared her for what was to come in her future.
I will call my friend Ruth, as she reminds me of the biblical character with the same selflessness. Her career led her into a service industry. She became a licensed physical therapist assistant. She worked with the aging community and helped those in special education. Her concentration was on positioning and seating for patients in wheelchairs. How ironic that, at the age of 34, she would find herself utterly dependent on a wheelchair. It wasn’t her first brush with death that took away her freedom of movement. No, it took quite a bit more to make her to sit down!
Ruth’s first brush with death was when she developed meningitis. After receiving the dye for the MRI, she stopped breathing and went into anaphylactic shock. Unfortunately, she had been left alone, so her condition wasn’t discovered right away. This left her needing to walk with crutches and braces, but nothing was going to slow her down. After all, she had always been an athlete, physically active and adventurous.
Her second accident happened during an outing on a 4-wheeler. Remember, her walking ability was already hindered, but that didn’t stop her from being bold and daring. Someone foolishly gave her the wrong directions. When she gunned for the hill, the signal she interpreted known universally as the “all clear”, was a mistake. She plummeted over a cliff. Did that stop her? No!
While working as a therapist in braces and crutches, she was transferring an elderly woman to her wheelchair. Ruth fell, and that was it. Now confined to a wheelchair, what did she do? Well, you may ask, “what would any of us do?” She did what NONE OF US would do. She adopted a medically fragile child. Her new baby being serendipitously placed in her arms is another story all together.
Let’s get back to our topic of freedom. Many would say that Ruth had her freedom taken away from her. She was no longer ambulatory; she was no longer free to work within the profession she loved; she was no longer a wife; but she was a mother. She was a mother of a child with a rare form of Brittle Bone Disease.
The baby girl was given maybe 6 hours to live, then 6 days, then maybe 6 weeks? How about 6 months? She will soon be 16-years-old! Her disease doesn’t allow her to have the freedom most teenage children experience. She can’t walk. She is not able to be independent. The school district told her to stay home because they wouldn’t consider dealing with her condition.
Mom and daughter are both dependent on wheelchairs; which is neither and easy, nor a comfortable life. It’s even more complicated when they don’t have transportation to leave their home. While home was a place that they loved, it often felt like a prison with no parole.
“I think the key to freedom is ACCESS. As long as we can be turned away from reservations or services based on being in wheelchairs, it’s not freedom.” – Ruth
When requiring accessible services, facilities, transportation, medical care, access to tables at restaurants, people in wheelchairs are challenged by some instances most of us would take for granted and consider as common sense. Here are some common examples.
- Medical Care & Transport. Many times, when both ladies needed medical care, Ruth had to decide who could be treated first and taken to the hospital by medical transport. Medical transport will not transport two wheelchairs. In these instances, she always chose her daughter. Every day, Ruth asked herself, “How do I get where I need to go?”
- Room Rentals. Rent rooms but have zero handicap parking spaces for unloading.
- Hotel Check-in. We try to check in, but the counter is above our head!
- Free Breakfast. Wheelchairs can rarely access the food on countertops.
- Gas Stations. While there is a “push for assistance” button, it requires us to exit our vehicle and be able to reach above our heads to push it. If people have speech or hearing issues, the intercom system is useless!
Each day, we learn about access issues and frustrations. Fortunately, we also learn and experience that when physical barriers exist, often the human spirit steps up to help bridge the gap. The kindness of strangers makes a world of difference. For able bodied people, please consider your surroundings and reach out to those who may need help or even a simple “hello” and a smile.
This year, while America celebrated the Land of the Free and the Home of the Brave, the meaning of freedom and bravery meant much more to Ruth and her daughter. Their celebration included gratitude for the freedom of transportation! Recently, through applications, grants and the generosity of the state of Oregon and The Steelman Family Foundation, they received a new van custom-fit for two wheel-chairs. It was quite a special van because Ruth needed custom hand controls to drive, and her daughter needed a van large enough to turn around and be locked in by mom… from mom’s wheelchair. It’s one of a kind.
Can you imagine their delight and joy? With the freedom of transportation, the bravery to venture onto roads unknown, how do you suppose these two ladies celebrated the 4th?
The first stop, of course, was the community parade. Prior to the parade, Ruth wrote a letter to the mayor addressing the ordinance that prevented floats and vehicles from throwing candy. Her letter stated, “So, what you’re saying is only able-bodied children who can run and walk will have the freedom to gather candy?” Ruth’s letter prompted the mayor to change the ordinance to permit persons on floats to throw candy to the bystanders. This gave her daughter a whole new experience as she was finally able to collect candy at the parade!
Next on the list was the fireworks show!
Then, finally, in the new van, they took their very first road trip vacation. During their trip from Oregon to Canada, they encountered many barriers along the way. The most ironic issue was with the hotel room. When booking, Ruth specified ADA. However, when they arrived, the room was only accessible by stairs. The hotel explained that “the room had a catch bar in the bath and was considered ADA approved”. Really? Fortunately, they were able to stay with friends.
Unfortunately, the trip was also a goodbye trip for a dear family friend who passed away from cancer. Both were devastated. They couldn’t attend the funeral, they couldn’t say goodbye, they couldn’t find closure because they didn’t have a reliable vehicle. Now, that they had an accessible vehicle, their priority was to visit Linda’s grave and her grieving husband, and find closure. When they arrived at the gravesite, Ruth’s daughter sat and chatted to her departed friend. She laid a painted rock on the headstone. She told her mom that she had said goodbye, and she knew that her friend was finally at peace. On the way home, her daughter asked,
“You know, mom, do you know what this car has given me?”
“What?” Ruth replied.
“It’s given me the freedom to be a kid again. I’m not a patient anymore. I’m just a kid.”
We are blessed in this country with many freedoms. Oftentimes, we forget the simple things. When was the last time you thought about and were grateful for the
- freedom to vacation
- freedom to shop
- freedom to go to school
- freedom to reach medical care
- freedom to visit a park
- freedom to not be confined to your home
- freedom to drive and ride with your family
Transportation is not just for the able-bodied. It is a truth. It is a right. It is evident. And it is deserved.
If this article provided understanding for you about what it is like to live in a wheelchair, it has done it’s job! If it inspires you to want to take action to help others, donate or arrange a corporate partnership, contact René Steelman via phone at 888-222-5113 or visit www.SteelmanFamilyFoundation.org.
About René Steelman
“Find the Strength in Your Solutions, Not Your Struggles.”
Award-winning interior designer, René Steelman knows quite a bit about tilting the balance towards solutions rather than struggles.
“Designing our lives and careers is so important because chaos is so hard.” – René Steelman
This is true in our living rooms, as well as living in general! Life doesn’t always turn out like we plan. Sometimes, a curve is thrown our way that mixes up the balance of our lives or careers. Sometimes those changes are jarring. They require us to take charge of our own lives in ways we didn’t expect.
As an active philanthropist and founder of Steelman Family Foundation, René strives to provide as many families as possible with wheelchair accessible vans. Partnered with United Access, SFF has contributed more than 30 vans since 2016 to families around the country, holding true to their mission, helping “Families who Roll.”
As professional speaker, author of Heaven Sent and Bent and cerebral palsy advocate, René Steelman leads audiences to sift through the challenges and strip down life’s priorities to discover and experience joyful moments. Through humor, compassion, and a take-charge attitude, René shares skills and solutions to cope, survive, live, and thrive during life’s unexpected and overwhelming circumstances.
When not traveling the country speaking or promoting SFF, René spends time with her husband, six children and many grandchildren. Around the clock, with great support, and her family, she cares for her adult son, TJ, who has cerebral palsy. To re-energize for her next mission, she counts her blessings as she sips umbrella drinks by the pool.
Contact René for your next event or to inquire about sponsoring a family in need.