Battle Cry!

Lady Margo is a dear friend and genteel advocate for the citizens of DelBaid. Today I got a phone call from her. She is in a foreign country getting a prestigious award and taking a tour of this country she was visiting.

She has rented a vehicle equipped with a wheelchair lift from a company in their largest city. This local business is a franchisee of a specialty van rental company based in Glendale, Arizona, USA.

The van has several problems including a door that would not latch, therefore the motor will not start, the remote to operate the door does not work either, the interior is dirty, and the front passenger seat has not been removed as requested so Lady Margo would be able to sit comfortably in her wheelchair near her husband, Lord James. There are multiple warning messages on the dashboard that the vehicle needs serving. The final insult is the license plate being out of date, resulting in a ticket from the local police force.

From the time the van has been delivered to her hotel, Lady Margo told the local owner about these problems, but all she has gotten is excuses and undelivered promises. She has called the company president who has been rude to her and has told she is blowing the problem out of proportion as she has already heard from the local owner that Lady Margo is a troublemaker.

So Lady Margo called the palace asking my advice on how to proceed. Fortunately, I have connections in that country whom I called to discuss the situation. They are not leaders or rulers, but government workers.

Bravo to the Bureaucrats! They listened to this tale of woe and have provided information on how to proceed with complaints to three national governmental agencies while expressing genuine concern about the situation. One even has asked to be kept informed as to how everything turns out.

I am quite surprised at this company that specializes in wheelchair lift equipped vans has such poor customer service. They are serving a market that has little flexibility when it comes to accessibility. You would think that any company understood why a vehicle has to be in excellent working order, it would be them. What if Lady Margo were traveling alone and the sliding door wouldn’t latch and she doesn’t have the strength to force it to so? The motor will not start, the van can’t move, and she would be stranded wherever the company dropped off the vehicle for the customer. Shouldn’t they replace the vehicle without any complaint?

Oh yes, they told Lady Margo and Lord James that they could take out the bench seat themselves, leave it at the hotel, and the local company would come and retrieve it. They are paying a hefty price per day (around $100 USD) to rent the van and don’t normally travel with the tools needed to do seat removal.

Duke William and I have the unilateral power to declare war on behalf of DelBasid, but we feel less drastic steps should be taken. As outraged as the Duke and I are at how one of our citizens was so poorly treated, the nation where the incident happened is not at fault. A boycott of this company will be more appropriate. What a shame that a company that almost a monopoly on accessible van rental can have such a disregard for their clients. The local owner may be a “bad apple” in the barrel, but the company president will not win any awards for service recovery.

I know Lady Margo conducts herself at all times as a refined representative of the Duchy of DelBasid. However, they will find they picked the wrong person to tangle with. For all her proper and well-mannered demeanor, Lady Margo has the ability to tell the company to go hell in such a way, they can’t wait to get there. The Arizona company has no idea of the repercussions they will face from our citizens and others who will think twice about renting “wheelz” from this Arizona company.

Conflict At The Castle

Contrary to popular opinion, we persons with disabilities aren’t this monolith of beliefs, opinions, habits, and culture centered on our disability experiences and lifestyle. True, there is common ground, but there is division between and among us based on philosophical, cultural, and economic issues. The Duke and I are perfect examples of a great divide.

Persons with hearing loss and persons of short stature are incompatible. It’s a matter of the law of physics. The farther sound has to travel, the less volume it has. At six feet two inches, Duke William is deaf in his left ear, with greatly diminished hearing in his right ear and worsening because of aging. I am perhaps four feet nine inches and now shrinking due to the aging process. When I am on my motorized scooter the distance between my mouth and his ears are even greater.

This height differential greatly impairs our ability to communicate, except when we are seated and facing each other in a completely quiet room. These are the optimal conditions, which rarely occur in our daily schedule. The result is that the Duke and Duchess of DelBasid are communication-challenged.

Usually the Duke is hurrying along one of the castle corridors tending to some state matter, while I am going full speed on my scooter taking care of my responsibilities. We meet while moving, as usual I’m on his deaf side, I speak, he doesn’t hear me, and then I try to use the proper protocols to get his attention. I try a friendly wave, or some sort of other visual signal. If that doesn’t work then I gently touch his arm, give a loving caress of his hand or nudge his thigh. I call his name loudly but this time it doesn’t work. The Duke doesn’t hear me as he is distracted or deliberately ignoring me. So I have to take stronger measures. Sometimes I get the feeling the Duke deliberately annoys me, when he says “I really enjoy peace and quiet as I stroll the hallways” Depending upon the situation and my mood, either a hand smack on the ducal tush, a whack on his leg with my metal cane works or when all else fails, running over his foot with my scooter is the next step in communication. This really isn’t proper royal etiquette, but after 40 years of marriage, you do what you have to do to get results.

It won’t be effective to shout as the higher pitch of a female voice is outside of his decibel range. Why doesn’t he use digital technology and get one of those fancy hearing aids? Duke William, because of pride or stubbornness, refuses. He says the rest of us create the problem by speaking too softly, mumbling, and whispering. I maintain he hears what he wants to hear and has selective deafness. Let me mumble something under my breath that I don’t want him to hear, and he understands it without any problem.

There is a second law of physics that impedes our communication. The importance of the thought to be spoken is inversely proportional to the distance of the body through the doorway. I have yet to learn to cease talking once the Duke clears the doorframe. There has to be some mysterious switch in my brain initiating my most important thoughts and messages to impart to him as soon as he steps out of my sight and out of his limited hearing range. It is frustrating for both of us. Since he is the more mobile partner, I believe it is his duty to return when I ask him. He, on the other hand, feels I need to get my mind more organized and think of these things while I am in his royal presence. I shall censor what happens in our private chambers over this opinion, but suffice it to say, we have had many long and loud discussions on the topic.

The problems escalate when we are on one of our walkabouts among our citizens. Noise such as music, people talking all at once, horses trotting, etc. makes it impossible for Duke William to use his limited hearing. While he is striding along, I am keeping up with him on my trusty scooter, making casual conversation with the people who have come to see us. The Duke’s automatic response to my comments is “What? You know I can’t hear you with all this noise.” So he stops, bends down to hear me as I speak clearly into his “good” ear. What looks like an endearing moment to our citizens is actually my telling him his pants are unzipped.

Persons with hearing loss and persons of short stature can overcome these communication impediments, but they either have to be seated next to each other at the same table or in bed together.

What A Dame!

You couldn't overlook a Dame who smoked Cuban cigars and played quarterback with her brothers on the family touch football team. Dame Eunice was born with the proverbial silver spoon in her mouth and grew into a striking, vibrant, energetic woman. She was drawn to helping others because of a family secret, which she disclosed when her brother was running for the highest elected political office in the country. Her sister, Rosemary, had an intellectual disability. In this family of high achievers, this was something to be hidden.

Dame Eunice didn't just uncover the secret, she saw the missed opportunities her sister never had and vowed to do something about it. She began literally in her own back yard with a camp for children who at that time were labeled the now repugnant term "retarded." From this camp, with the help of her brothers, sisters, nieces, nephews, husband, children, and soon thousands of volunteers she began a program of sporting events for children and adults with cognitive disabilities.

To the world and to some extent in the Duchy of DelBasid, this was nothing short of revolutionary. The prevailing thinking at that time among the Slamron (remember in DelBasid we look right to left) was that those with this type of disability were better off institutionalized or in sheltered workshops. Low expectations were the norm, and the idea that persons with cognitive disabilities could even compete in sporting events was ground-breaking.

From Eunice Kennedy Shriver's backyard swimming pool grew the Special Olympics, now a world-wide event. The Duchy lost a mighty voice on behalf of our citizens. What a difference she has made in the lives of persons with intellectual disabilities! They have found their voice and can now speak for themselves as U. S. President Obama learned after he made an injudicious remark about his bowling skills on the David Letterman show. A gold-medal winning bowling champion from the U. S. Special Olympics offered to give the President lessons.

Yes, indeed, Dame Eunice was one of a kind, and the world will miss her. Her organization will carry her energy and spirit forward to continue the odyssey and commitment to which she dedicated her life.

TRIBUTE TO MARCUS SOLOMON JONES

There is something inherently unnatural and unfair when parents lose a child. The natural order is for the child to mourn the loss of a parent, not vice versa. It is even more unjust when that child was born with disabilities and has worked to prevail against the odds stacked against him.

The Duchy of DelBasid has lost a much-loved citizen. Marcus Solomon Jones would have celebrated his eight birthday today. Marcus is the son of dear friends, Carlton and Carmen Jones. Marcus was the miracle baby who survived many difficulties – a cleft lip and palate, a narrow trachea, an unclosed heart valve, and mal rotated stomach and intestines. They didn’t know if Marcus would live, but he endured multiple surgeries and exceeded expectations every step of the way.

Marcus Solomon is the joy of his parents’ heart and lived up to his name. Marcus means “warrior” and Solomon means “peaceful,” and he battled to learn to walk, to communicate, and to participate. He had a placid disposition, except when he was teasing his younger sister, Natalie.

Because of his tracheostomy, Marcus was unable to speak, but he surely did have expressive eyes and face. He was learning sign language and had a computerized communication device. He made his feelings and wishes known. He was famous for mischievous sense of humor and charming personality. Once he learned to walk, he never did. He ran full-speed ahead, bouncing with energy and enthusiasm, while charging into life with unrestrained fervor. His parents never listened to the physicians’ expectations, but to their hearts, and Marcus surpassed the predictions and prognosis.

Marcus touched every person he encountered, beginning with the staff at the Neonatal Intensive Care Unit, grandparents, relatives, friends, neighbors, teachers, classmates, his homecare nurses, and strangers. You couldn’t meet him and not smile. His zest for life, his big brown eyes brimming with laughter, and that smile just captured your heart.

Sister Natalie wasn’t shy about speaking up for him and being his advocate, and sometimes his adversary. They had a typical sibling relationship. There is a big hole in her tender little heart for her big brother, as well as in her parents’ heart for their beloved son.

No one here on earth ever heard Marcus’ voice. He couldn’t cry loudly as an infant, babble as a toddler, or speak with a childish lisp. Yet his actions spoke volumes. He lived with a sense of purpose, was determined to do the best he could with the limitations placed upon him, loved without restrictions, and showed how strength can come from weakness.

The rest of us should do likewise in honor of his memory and as a testimony to his family’s love and dedication. Marcus was an organ donor so his body will provide life to those who otherwise wouldn’t have a good chance of living. I’d like to think that those receiving this precious gift of life from Marcus will also inherit some of his spirit. The world will be a better place because of it.

I've Never Been to Spain but I Have Been to the Duchy of DelBasid

I always envisioned my life as a destination, and my goal was to be like Holland – level, no unexpected changes, flowers along the way, and a few windmills to provide a gentle breeze to propel me along when I slowed down. I was prepared for that environment. Instead, my life ended up like Nepal – high mountains to climb, deep valleys to traverse, steep rocky trails, harsh climate, and moss instead of flowers. I have come to appreciate and survive these challenging and tough surroundings I find myself living in.

I have a dual citizenship in both the U. S. and DelBasid, as do my husband and son. The ironic thing is I did not choose to live in this kingdom. It was an unwilling destination on my part, thrust upon me when I married. It was a family arranged affair. The Duke’s grandmother, the Dowager Duchess of Guiney, selected me for Duke William the Younger. She arranged for us to meet in college, it was love at first sight, and we have had 41 years of marital happiness. A fairy tale with a “happily ever after ending” – almost.

I was born for temperate climates, an uncomplicated life, and quiet contemplation. I was shy, bookish, and somewhat introverted and unconfident. My husband set out to boost my confidence and help me get over my shyness. Duke William the Younger put me in a classroom of his subjects to teach. If you can survive in a classroom of 12 and 13 year olds, you can endure just about anything. They gave me survival skills for the life I would have to lead in my new country.

The Duchy of DelBasid is similar to Nepal with many physical obstacles to deal with, a culture that isn't well understood, and the population living there have to adapt to a variety of difficult conditions. It is an overlooked principality. The citizens call themselves TiyitiBasid and have many skills and abilities.

I am proud to be a part of such a vibrant, talented population. My goal is to bring attention to my nation and its culture, customs, and etiquette so others will start to feel a little more relaxed with us, and we would seem less foreign if they took steps to understand us.

If you are on your way to look in an atlas for this realm because you are curious about this country and its way of life, you won't find it on any map. DelBasid is "disabled" spelled backwards. You can become a citizen of the Duchy of Del Basid at any time or if you live long enough.

Although I am a reluctant Duchess, I want to share with you our family’s experiences living in the Duchy of DelBasid.