My Go-To Tunes Christmas Road Trip

2021 is almost over and yet I am not substantially closer to following my writing dream. The year has been difficult on many levels – the pandemic, personal health challenges, work changes. You know the drill.

Earlier this week I realized I had not listened to any Christmas music. If you have been following me since I started this blog, you may remember from this post, it’s hard to be sad when you’re singing. Sure enough, as soon as I started singing “Jingle Bells” in my car, my mood changed. Later today I will drive to my hometown for the holiday weekend. I plan to sing the entire 2 hour drive using this Christmas Road Trip playlist, which you can get to by clicking the link below.

https://open.spotify.com/embed/playlist/1etTQxCpydniJuMU3czQJh?utm_source=generator

I’m sharing my playlist as a gift to you. The songs are a mix of religious and secular, traditional and new. If you are hitting the road this holiday, open your Spotify app and join the fun!

I hope your holiday is full of joy and love. I look forward to seeing you in the New Year when my quest to pursue my writing dreams will start anew!

To This Year’s Class of MWA

Two white women wearing white t-shirts with red lettering that reads "Ms. Wheelchair America." The woman on left has short brown hair and is leaning down next to the woman on the right who is wearing glasses and is seated in a wheelchair. They are on a walkway over a river.Facebook showed me this photo this morning and reminded me that seven years ago, my best friend and I were having fun in Grand Rapids, Michigan, during the week of the 2011 Ms. Wheelchair America (MWA) pageant. It was a timely reminder, since the contestants are gathered in Grand Rapids again right now. They are getting ready for the second day of judging as I type this.

MWA has been a part of my life since I was Ms. Wheelchair NY 2001. As a state titleholder seventeen years ago, I could not predict all the ways MWA would impact my life. I made some of my best friends at my first national pageant as a participant in MWA. Maintaining a state program; mentoring state titleholders; serving on the MWA Board of Directors; traveling to other state pageants – all adventures gained by my volunteer involvement and things that likely would not have happened if I had been crowned Ms. Wheelchair America (I was first runner-up).

Most important to me is the peer support group I have cultivated through my involvement with MWA. In my opinion, this is the best aspect of the MWA organization. At any moment, I know I can reach out to women who have experiences similar to mine. They are creative, resourceful, smart, and generous. If I have a problem or quandary, they will have insight and will offer it freely. If I need support or understanding, they are empathetic and encouraging. This sisterhood is a valuable source of energy for me when I am feeling bogged down by the continual need to advocate for access in a world which is often not designed for our needs.

This year’s titleholders are waking up to a new day. It is mid-week so they still have energy. I hope they realize they are participating in a week which will change them. To all of them, I say best of luck and enjoy this opportunity. This week is not about who goes home with the crown on Sunday. It’s about who you connect with on the way and how you put that into practice in your everyday life when you go back home to your individual states.

When Will I Get Carried Away?

Thursday morning as I ate my oatmeal and scrolled through my Twitter feed, I noticed a story with the headline American Airlines Checked My Dignity at the GateI opened the post which was written by Mark E. Smith, or WheelchairJunkie as he is known to me via social media. In case you missed it, here’s a synopsis.

Mark is a power wheelchair user who travels frequently for his job. His recent trip with American Airlines earlier this week started much like any other trip. After working for 5 days at a trade show in Southern California, he was ready to return home to his wife and children. Being familiar with the process of flying while disabled, Mark arrived at his gate ready to pre-board, with his ticket in hand and wheelchair tagged for baggage. He was assisted to his seat and waited for departure as the other passengers boarded around him.

However, Mark didn’t get to take that flight home. Here is how Mark described what happened next:

“Seated in row 24, my attention was called away from looking out the window, to a large group of American Airlines’ flight attendants, gate agents and ground crew – a sea of varying uniforms and two-way radio chatter – coming up the aisle. Without speaking to me, they asked the two women sitting next to me to move from their seats, explaining that they were removing me from the plane. I was immediately alarmed, not knowing what was going on, and asked what the issue was? Everyone in the American Airlines group paused and the entire plane was voiceless – just the mechanical hum of the 737.

I looked from one person to the next to the next, and all just stared. Finally, a flight attendant exclaimed, “This plane isn’t leaving without him!” and sat beside me. Her sudden burst of emotion confused me even more. I was then told that communication between the captain and ground crew instructed that he wouldn’t accept me and my wheelchair on the flight.

I was dumbfounded. American Airlines personnel were refusing to transport me because I am a person with a disability who uses a wheelchair.”

This is not the first time I have heard of a disabled person being refused passage on a flight. Back in 2010, US Airways escorted frequent traveler and motivational speaker Johnnie Tuitel from a flight. Tuitel was in his seat before airline personnel told him he would not be able to fly without a companion, something he does regularly. But, according to this article on CNN:

“US Airways spokeswoman Michelle Mohr said Tuitel was not deemed unfit to fly alone just because he uses a wheelchair.

‘He did not appear to have the ability to assist himself in evacuating in the event of an emergency. He appeared to have a lot of difficulty moving,’ Mohr said.”

Incidents like this just don’t happen in the United States. In 2015, Luke Kenshole was escorted off a British Airways flight in London after all passengers had boarded. His crime? Being disabled. Luke has cerebral palsy and uses a wheelchair. According to this article on the Daily Mail:

Luke was on the plane before anyone asked him whether he was able to take himself to the toilet, and he said he needed assistance to get onto the wheelchair.

He was then told he would have to get off the plane for health and safety reasons.

Just for the record – I flew from Los Angeles, California to Melbourne, Australia in 2015. I was not able to take myself to the toilet on the plane during the 15 hour flight. Since I pre-boarded the plane before the other passengers, I spent over 16 hours in seat 49C. I was not kicked off the plane for health and safety reasons, although choosing to hold my pee for 16 hours was probably more detrimental to my health than anything else I did that year!

On Thursday, I shared Mark’s post on social media. Some of my friends expressed outrage. Some questioned how it is legal for an airline to act this way towards a disabled passenger. I wanted to answer this question so I started to do some research. I am not a legal expert, and if any reader has insight I welcome you to share it with all of us.

First off, the Americans with Disabilities Act is not the law which governs airline behavior when it comes to disabled passengers. The Air Carrier Access Act governs airlines and provides regulations related to treatment of passengers. According to the U.S. Department of Transporation rule (Title 14 CFR Part 382), airlines are prohibited from discriminating against people with disabilities. The following, taken from the U.S. DOT website, is a few of the prohibited practices:

  • Airlines may not refuse transportation to people on the basis of disability. Airlines may exclude anyone from a flight if carrying the person would be inimical to the safety of the flight. If a carrier excludes a person with a disability on safety grounds, the carrier must provide a written explanation of the decision.
  • Airlines may not require advance notice that a person with a disability is traveling. Air carriers may require up to 48 hours’ advance notice for certain accommodations that require preparation time (e.g., respirator hook-up, transportation of an electric wheelchair on an aircraft with less than 60 seats).
  • Airlines may not require a person with a disability to travel with another person, except in certain limited circumstances where the rule permits the airline to require a safety assistant. If a passenger with a disability and the airline disagree about the need for a safety assistant, the airline can require the assistant, but cannot charge for the transportation of the assistant.

Let’s look at that first bullet point. When was the last time you heard the word “inimical” in real life? In case you don’t know what it means (like me) I’ll save you the trip to the dictionary. Inimical is an adjective which means likely to cause harm or have a bad effect. Used in a sentence: The disabled passenger was bodily removed from his seat because the pilot thought he was inimical to the safety of the flight from Los Angeles to Philadelphia.

Secondly, every airline provides passengers with a contract, usually referred to as Conditions of Carriage. You know that legal mumbo-jumbo you ignore when you purchase your tickets? Yeah – until yesterday I had never read that either. But I did read the American Airlines Conditions of Carriage and found a section called “Acceptance of Passengers” which listed various reasons American may refuse to transport or may remove a passenger from a flight. Number 5 on that list?

Your physical or mental condition is such that in American’s sole opinion, you are rendered or likely to be rendered incapable of comprehending or complying with safety instructions without the assistance of an attendant.

Side note – number 11 is an offensive body odor not caused by disability or illness. I know for a fact that rule gets ignored often! Back to the issue of being too disabled to fly…

Let’s suppose the pilot thought Mark was inimical to the safety of the other passengers on the flight. I don’t know why Mark, a disabled adult, might be more inimical than an unaccompanied minor who might not be able to independently follow directions during an emergency. I have never witnessed an unaccompanied minor being physically lifted and restrained in an aisle chair and removed from the cabin of an aircraft. Would people speak up if that happened? Nobody spoke up for Mark.

“As I scooted across the seats toward the crowd, having to transfer into a dolly-like chair so that they could roll me off of the plane, all of the other passengers watched, silent. Although many clearly heard that I was being removed because American Airlines didn’t want me and my wheelchair on the flight’s manifest, no one questioned why, in 2017, a businessman with a disability was being ejected from a plane? In that moment, I realized the gravity of it all: I was being stripped not just of my civil rights, but of my humanity. For the first time in my life, in the microcosm of that American Airlines Boeing 737, I was discarded as a human being – literally.”

I almost cried when I read this paragraph. Having been late for connecting flights due to weather delays, I have endured the stares when I am carried onto a plane after all other passengers have boarded, the glares and sighs from those around me who are inconvenienced by having to move so I can be lifted to my seat. I cannot imagine what it would be like to be forcibly lifted and removed like a criminal, without an explanation from the crew.

Thankfully, Mark was able to get home on the next American Airlines flight to Philadelphia. His experience was featured on his local television station. You can hear Mark talk about it in this report and you can read what New Mobility had to say about it here.

Every time I fly, a part of my mind wonders how I will react if the crew challenges whether or not I will be inimical to the safety of the flight. Typically, once I am settled in my seat on the plane, the flight attendant comes over to ask how they might be of assistance. If I am flying without a companion, I let them know I might need the plastic bin I use as a footrest in flights moved when we are in the air. Usually, the stranger seated next to me offers to help once I introduce myself and explain how I’m counting on them to secure my oxygen mask if the cabin loses pressure.

The simple fact is once I am on the plane, I am not able to do much for myself. I can usually put in my own earbuds. If I have a tray table in front of me, I am able to hold myself upright so I can eat and drink. Other than that, I am unable to do much more than sleep and count the hours until I can get back into a comfortable seat.

My fear is that one day, an uneducated pilot or crew member will see me and decide I am too much of a risk. When they come for me with the aisle chair, will anyone speak up for me and my humanity?

30 Days of Thanks Day 14 – Guest Post by Carolyn Studer

I first read Carolyn Studer’s writing when I joined an online group of women writers. Like her writing, Carolyn is honest and thoughtful. I have learned how to write about social justice in a manner that is accessible to all by reading her work. I am thrilled she was willing to share a gratitude post on my blog. I hope you will head over to her blog to read more of her work after you read this post. Thank you Carolyn for helping me look at small things in a new way.

THE POWER OF SMALL THINGS

Image of a stalk of flowers with a blue sky and puffy white clouds in the background.
Photo by Beate Walden.

When Denise asked me to write a Thanksgiving post a letter to someone who had influenced my life in a positive way so many people came to mind.

But I kept thinking about Alejandro, the young man who drove me and six other women all over San Miguel Allende, Mexico a few weeks ago, when we were on a personal growth retreat. So this letter of thankfulness is for him.

Dearest Alejandro,

You were our driver for five days last week when we were on retreat in San Miguel Allende.

You drove us down the narrow, cobblestone streets of your beautiful city, to the pyramids in Teotihuacan where we learned about an ancient civilization, and to El Chargo de Ingenio, a sacred site near San Miguel Allende where the Indians gather once a month to celebrate and dance.

The silence there was so beautiful.

Image of dessert scrub walking path with deep blue sky and white clouds. Women are walking on the path.
Photo by Beate Walden.

You waited for us while we walked through the botanical gardens, hiked on the steep trails above the deep ravine, and listened at the trails end to an exuberance of frogs at a nearby pond.

At the end of our time there which, for me, was magic several of us waited at the entrance of the gardens for the others to join us.

One of the members of our group was in tears as she talked about a recent and painful loss.

You came over and put your hand over her head, and stood there for a while, and prayed quietly.

This is not the kind of thing that happens in L.A.

Photo of a Mexican man holding his hand in prayer over the head of a Caucasian woman who has her head bowed. A blond Caucasian woman looks at them through sunglasses.

Your sensitivity and willingness to share your gift with our sister touched us, and moved us.

Los Angeles is a huge city with millions of people where we focus so often on the big things the Grammys and Oscars we win, our book launches, our big dreams and achievements.

While our dreams our worth pursuing, and our achievements worth celebrating, so often we forget about the power of small things, the small acts of kindness that bring meaning and purpose to our lives.

And thats what I am thankful to you for this Thanksgiving for reminding me of the power of small things the warm smile of a stranger, the comforting touch someone who knows we are dealing with loss, the cup of tea we share with a close friend, and the words and acts of kindness that can change lives in an instant.

Photo of a group of six Caucasian women in casual clothing standing with two Mexican men in front of a stone building.
Our group with Alejandro, the fourth from the left. (That’s me in the red.)

 

Little things Ill give to you

Till your fingers learn to press

Gently

On a loveliness;

Little things and new

Til your fingers learn to hold

Love thats fragile,
Love thats old.

Marion Strobel

Happy Thanksgiving to you,

in Gratitude, Muchas Gracias,

Carolyn

On the Road Again

One of the biggest hurdles in my recovery from my broken femur has been driving. I drive an adapted minivan, a sleek silver vehicle I have named Clyde. Clyde has a ramp which allows me to drive my wheelchair in and park it where the middle row of seats would normally be. My driver’s seat is mounted on a transfer seat base which allows it to swivel. I slide out of my wheelchair into the driver’s seat, rotate the seat to the front, slide forward, and drive. At least, that is how the process has worked for the past fourteen years until my orthopedic surgeon restricted me from putting weight on my left leg after surgery.

Since February I have worked in physical therapy to regain strength and function with the goal of being able to independently transfer in and out of my driver’s seat. My apartment is located in an area not served by our local public transportation. The disabled paratransit service does not come to my apartment as I live too far from a fixed bus route.

If I cannot independently drive, I have three options. I can ride as a passenger in my own van while someone else drives. I do this when I have to, but I am a terrible back seat driver in my own vehicle. Another option is to have someone help me get in my van at my starting location and someone else help me get out of my van at my final destination. Or, I can have someone accompany me every time I need to drive somewhere.

I have used each of these methods to remain employed and engaged in my community, and I am appreciative of the friends and family who continue to assist me. But when you are used to the having the ability to get up and go whenever you want, scheduling your activities around someone else is limiting. Like most people who have been driving for decades, I am used to the freedom of movement which comes with the privilege of being a licensed driver who owns a vehicle.

In early April, I reached an important rehabilitation milestone when I successfully transferred in and out of my driver’s seat. I required assistance, but I did it! After a few practice sessions, I began to drive around my neighborhood. Within two weeks, I was driving to and from my office once or twice each week. My knee protested from time to time, and realistically I was unable to drive for more than 45 minutes at a time before the discomfort became too much of a distraction. But I was driving!

Behind the wheel for the first time in April.
Behind the wheel for the first time in April.

This past Tuesday I reached an important milestone when, for the first time since January, I transferred into my driver’s seat and put on my seatbelt completely independently! It took me a good five minutes, and there were a few choice words flying out of my mouth from time to time, but I did it!

I still require assistance to get out of my driver’s seat and get back into my wheelchair, so I am not completely independent with driving. I don’t know if I will reach that status given the changes in my leg. This may be as far as I get with my rehabilitation when it comes to driving. I plan to make the move to driving from my wheelchair using hand controls within a year, so I just have to find a way to function until then.

For now, I know if I had to get somewhere in an emergency, I could get in my van and go. I might not be able to get out when I get there, but that’s a problem for another day.

My experience has given me a new perspective on the transportation difficulties people with disabilities face on a daily basis, particularly those who live in suburban or rural areas. I have not been as strong of an advocate for transportation as I could be. I plan to change that going forward. The push for community living can only be successful if people have access to their community and accessible transportation is a crucial component of independence.

In the days immediately following my discharge from the rehabilitation hospital while I was relearning how to function at home, I wondered if I would ever be able to take a road trip and spend the night anywhere other than my apartment. I enjoy traveling and the prospect of not being able to explore the world was frightening and depressing.

This is Memorial Day Weekend in the United States, the unofficial start of summer. I have spent every Memorial Day Weekend in my hometown except the year I was an exchange student and the year I was in the hospital after my gallbladder surgery. I was determined to find a way to make it home this weekend. Once I transferred into my driver’s seat on Tuesday I knew it would happen.

Yesterday I drove my van down the highway in the bright sunshine. I rolled down the window, cranked the music and sang the songs from my “move it” playlist with the wind blowing on my face. As I rolled to a stop at the end of the exit for Bainbridge, I couldn’t help smiling in triumph.

Sure, there is more work to do in my journey towards independence. But this weekend, I am content to be on the road again.