Geri does the ALS Challenge!

Finally! The #ALSChallenge for raising awareness for ALS aka Lou Gehrig’s Disease. Mr. Gehrig from the earliest time I heard of Yankee lore was my hero …his grace and dignity in the face of “bad breaks.” I know all about bad breaks, too, but like Mr. Gehrig, am lucky to have so much support from here, family and friends and my community of classmates from K to College and my town.

Now Hundreds of Thousands have taken part of this fun challenge …imagine what hundreds of thousands could do if we take part of of many challenges — to help raise awareness for all sorts of debilitating conditions but also more importantly — Peace in our World.

Freddie, Or, Why I Talk With Children

How we think of ourselves is often at odds with how others think of us. In this short memoir, author and diagnosed Diastrophic Dwarf Geri Mariano shares an encounter she had with an open-minded, inquisitive young boy named Freddie, her seatmate on an hours-long flight.
 

#EqualityIs: acceptance of differences of all kinds.

 

As digital communication becomes faster and more accessible, we are given a window into the lives of others, and given the chance to better understand differences. As TV shows like “Little People Big World” showcase people living “ordinary” lives simply in differently shaped bodies, I believe that opportunities for women with disabilities will continue to grow. As a woman with a disability, I look to women like Illinois Congresswoman Tammy Duckworth, a double amputee now serving as a leader for our country. I draw strength from examples like hers in my work raising awareness about disability.

In my experience, sometimes the simplest of interactions can affect great change, particularly with children. Children can often see beneath the odd-looking exterior a person might have and to see what’s inside. They are more open than adults, until they are taught that they shouldn’t be. These few moments with this little boy named Freddie remind me that the work I do speaking at schools is worthwhile. I remain hopeful that there might now be countless other open-minded children like Freddie out there.

 FREDDIE

Still adjusting myself in the spacious accommodations, I shifted back and forth, trying to get comfortable.

“I love first class,” said the child seated next to me.

I nodded, heartily agreeing with his declaration.

“I do it every time I fly,” he continued.  “Do you?”

I wish. I had only gotten this seat assignment five minutes before. Still weary from worry, I wiped away a stray tear of grateful relief over finally being able to relax on the second leg of the flight home, after a three-and-a-half day whirlwind trip.

Shaking my head no, I responded, “Hardly, but when I do, I like it very much.”

“My mom works for the airline,” he revealed, “so we get whichever seats are left open after everyone has boarded.” He looked at me expectantly, ostensibly awaiting an explanation as to why I was privileged to be in the airplane’s front cabin.  “Usually, whenever the airlines mess up my seat assignment,” I began, trying to make it sound simple, “they end up moving me to first class.  It doesn’t happen very often though.”

Satisfied for the moment, he went on. “My parents are divorced. I’m an only child, you know, so my mother takes me to a lot of places! And we always go first class. I guess I’m pretty spoiled.” He stated this so matter-of-factly, as if it were the most common state of being for a child.

How does one respond to such a proclamation?  And what was this kid going to be like the whole two hour flight to LaGuardia?  I shifted around to look at my neighbor more closely. He certainly dressed well–Lands End shirt, khaki baggy pants and a World War II type leather flight jacket. He had a small, round face and frame, pinchable cheeks, and cropped brown hair.

Before I could gather my wits for a response, he was already fidgeting with a hand-held Nintendo computer game, complete with different game cartridges and a re-charger apparatus. He then turned back to me and focused on my “legs” over which he had climbed earlier. His mother had seemed annoyed that I couldn’t move them out of the way.

“They’re prosthetics,” I started. “They cover my own legs, so I can walk. They don’t bend at the knees, so I need to sit in the first row, the bulk-head, so my legs will fit sticking straight out.”

“Oh.” Like most kids, he looked as if questions were bursting out of him.

The flight attendant then came with my complimentary pre-take-off drink, one I hoped would push me into the sleep which I had missed over the past few days.

 

Out of the corner of my eye, I saw my neighbor watch as I juggled the drink, a purse, and four fast wilting roses. Spotting my flower predicament, the flight attendant promised to come back with wet napkins for the flowers after we were airborne.

“Just came from a wedding and plucked these from my bouquet to bring home,” I offered, attempting to direct the course of conversation.

He nodded understandingly and with piqued interest. “Whose wedding?” 

 

“A friend from college,” I replied enthusiastically, happy for an opportunity to talk of the grand wedding, my first as a bridesmaid.

He eyed me suspiciously following that last answer.  “How old are you?”

“Twenty-five. How old are you?”

“Nine. You don’t look that old,” he pressed.

He was right, though. Even sitting down, I still looked shorter, younger and I sounded younger–my short vocal chords give me higher pitched voice, a physics phenomenon I learned in high school. And my arms were also shorter than normal. In medical terms, I am a Diastrophic Dwarf, but to kids, I’m an odd looking package. I didn’t blame him for wondering and staring. And he wasn’t rude about it like the kids who pester their parents with “Mommy, look at that girl.” Parents could be the worst offenders though, when they shame their kids into silence, thus perpetuating the “different equals freak” credo.

 

In medical terms, I am a Diastrophic Dwarf, but to kids, I’m an odd looking package. I didn’t blame him for wondering and staring. And he wasn’t rude about it like some kids.

 

 

Being nine, the boy’s interest immediately changed to a more urgent matter–why the flight attendant hadn’t asked his meal choice yet. On her next walk-by I flagged her down and explained the young boy’s concern. Once he finally gave his selection, he turned to me with a new look.

“Hey, thanks for getting her attention.”

“No problem,” I said, taking pleasure from my all too infrequent role as helper as opposed to help-ee. I suddenly felt very protective of the lad and wanted to know his name. “By the way, my name is Geri.”

“I’m Freddie.” He held out his hand to shake my offered hand, like a well-mannered boy. Most grown-ups are usually much more tentative during an introduction.

For a self-proclaimed spoiled kid, he was turning out alright.

The flight attendant returned with the promised napkins and Freddie asked about the wedding again. I gave a brief summary while he listened intently.

“Are you going to get married?”

He certainly was direct. A very good question though, one that had swirled in my head a lot over the past weekend. Some people didn’t think so. “Hope to, but you know, I’ll need to have a boyfriend first. Right now I don’t have one. But how about you? Do you have a girlfriend?”

He smiled shyly then took me into his confidence about his girl back home.

Later I asked Freddie about his travel plans.

“We’re going to New York for New Year’s. I have cousins on Long Island and we’re going skating at Rockefeller Center,” he bubbled with anticipation.

Above the clouds, Freddie and I dined together. When lunch came, Freddie was the perfect gentleman, offering to open all the plastic wrappers. The packages I could open with my stub-like fingers I did. The ones that were more difficult, I turned over to his eager hands.

 

When lunch came, Freddie was the perfect gentleman, offering to open all the plastic wrappers. The packages I could open with my stub-like fingers I did. The ones that were more difficult, I turned over to his eager hands.

 

 

From that point on we covered a range of topics, including my possible graduate school plans. Freddie assured me that if I ever chose Emory University, he’d fill me in on all the hot spots to go in his hometown of Atlanta. We didn’t talk the whole time though.  He played some more Nintendo and even offered me a turn which I graciously refused. Once, while he dozed for a few minutes, his mother came forward, leaned over me and checked on him. Smiling, I said, “Your son has been very friendly and helpful.  I’ve enjoyed talking with him.”

No smile, no nod of agreement. Nothing. Was I invisible?

In due time, we arrived in the air space over LaGuardia only to circle for an hour. The whole eastern seaboard had been fogged in for over 24 hours and the delays were endless. After a while the captain announced that the fog was still very heavy, that some planes were being sent to other airports. We had enough fuel for one landing attempt and for flight to Boston if need be.

Feeling uneasy, I turned to Freddie and grinned, to reassure him, just in case he might have been worried. He just nodded and then we both braced ourselves.

The plane started its descent but then the pilot pulled it up suddenly. “Sorry folks for that last jolt. I tried to land, but I couldn’t see the runway down there,” the captain apologized over the intercom. “We’re off to Boston. We won’t know for a while whether we’ll stay over there or try to come back here again later,” he explained further.

Freddie still appeared nervous, even after we were safely above the dense clouds. He went back to talk to his mother and returned dejected. “She won’t go to New York now,” he reported.

After finally landing at Boston’s Logan’s Airport to a round of applause, the captain came on with more apologies and advised us to wait for instructions. Clearly vexed over this detour and with apparently no patience to await word of our fate, Freddie’s mother came forward and hauled him out of his seat. He had accurately predicted that they’d be headed back on the next available flight to Atlanta. In whatever class seats were open, I figured.

Freddie loaded his belongings into his backpack and climbed over me for the last time. Shrugging his shoulders, he looked forlorn, and even apologetic. Before disappearing into the jet way, he glanced back, his eyes a bit brighter. “I hope you get married someday, Geri. I think you’re a nice lady.”

Maybe, someday. If there are more like you, Freddie.

About the Author 

Geri Mariano is a 46 year old woman with congenital defects of all parts skeletal. She was given up by biological parents of Italian heritage in 1967, when despite changing attitudes, shame and fear around babies who were not “normal” was still prevalent. Social Workers responsible for Geri’s care placed her picture in a local county newspaper, seeking a family for her and though never legally adopted, Geri was raised from 18 months old with a mom, dad and three sisters. She attended public school in New York State before the 1973 Rehab Act mandated that public schools accept students with special needs and she was “mainstreamed” before mainstreaming was a term used in education. Geri went on to attend Smith College and later graduated with a MS. Ed in Therapeutic Recreation. It was at Smith that she began talking with campus pre school students to promote awareness and understanding of those with differences. In the years since then, Geri has been interviewed for TV and newspaper outlets and taken her talks around the country. You can read more about Geri and her work at her website, JustCallMeGeri.com.

Extra-Curricular Matters – Lessons in Life

By Geri Mariano

I am not a parent, so the ubiquitous phrase “Back to School” does not elicit the glee it might otherwise from adults counting down the days until their children leave the house each morning. However, I am excited that the school year is fast approaching. And the reason for that is simple: school had, and still has, a tremendous impact on my life.

Unabashedly, I was one of those students who actually looked forward to returning to the routine of school each September. While I enjoyed the summer months, my physical limitations (I was born with abnormalities of all things skeletal) meant that I could never be as active as most kids. Therefore, school was a place I could belong–and even thrive academically –with peers for six to seven hours each day. So, during the spring of 1972, my mom and I made the rounds of Northern Westchester school districts as I was due to start Kindergarten come September. Our mission was to meet school administrators and find which districts would welcome a student with special needs; there was no federal mandate to publically educate children with disabilities at that time.

In all my presentations, I give much credit to the Byram Hills School District for accepting me before it was legally required to do so. Was everything hunky-dory from my first day to graduation thirteen years later? No. Were restrictions placed for my own “safety” (and likely school liability)? Yes. Were parents more nervous than my fellow Kindergartners? Yes! Was I made to feel an oddity from classmates? Happily, mostly No … and this is why I embarked, several years ago now, on sharing my stories.

When at Smith College, unable to walk quickly about campus, I zoomed around on what I affectionately called my “buggy”. My daily routes (to classes and my work-study job) took me past a campus pre-school where, unsurprisingly, the children who saw me would stare, point or giggle. A wise teacher flagged me down one day and asked if I might meet with the children. I readily accepted. Introducing myself, I asked them if I looked “funny.” When they admitted that I did, I agreed with them. I don’t remember all we talked about, but, when leaving, I suggested that now that they knew me, maybe I wouldn’t look so weird to them. Suddenly, I had many new friends, and each day after, there were waves and shouts of “Hi Geri!”

Geri in elementary school.

Pieces of a puzzle I hadn’t realized existed began falling into place. ?I thought of my Byram Hills classmates and how they had always known me. Years later, when reconnecting with many through social media, they all confirmed my hypothesis: they’d always accepted me because they always knew me as just Geri, one of them. I was never a stranger, so I was never seen as “different.” And had they known of any bullying incidents, each offered they would have quickly taken care of the situation. What an amazing gift!

Still, I am reminded how important it is to teach our children, and how adults in particular have their part to play–especially after one discouraging encounter at a local department store.

A group of three or four pre-teen girls began following me around while I was shopping alone. I can accept a look here, a stare there, even a pointed finger or snicker. But what I cannot abide are triple takes or being trailed by youth of an age that should be better mannered. I remember turning, raising my shortened arms, asking “do you have a problem?” The girls quickly moved away, but, minutes later, stealthily began following me again. I then turned to track them to the adult charged with their behavior. Loathe as I am to complain to a stranger, I interrupted this woman on her cell phone and simply stated that the girls had been very rude. Shrugging, the woman responded, “What do you expect?” I expect adults and parents to do better.

My mom often admitted I was dealt a bad hand and that life isn’t fair. However, she’d continue, that did not mean the world owed me anything; nothing would be handed to me on a silver platter. Has life been a struggle? Yes. Have I had good times over the years? Absolutely. Would I like life to be easier? Of course. But I’d also like to see better understanding in the world for a whole host of difficulties.

I choose to do my part to facilitate that understanding, at least of differences, in our community and elsewhere. Will you join me? ?Thanks, Just Geri

Longtime Armonk resident Geri Mariano was born with diatrophic dysplasia, a lifelong condition that affects bone and cartilage resulting in many physical and social challenges.

© Content copyright. TheInsidePress.com. All rights reserved.

Equal Access Disabilities Rights Should be Upheld

By Geri Mariano

August 26, 2014
In recent weeks there has been much commentary on this site and other local outlets about handicap parking and the abuse of motorists parking in reserved spaces without the requisite tag or plate proof. There are few spaces for those drivers or passengers who have mobility issues, whether walking with walkers, canes or prostheses. or those who use wheelchairs to get around.  Handicapped parking is just one aspect, though, of the overall issue of access to businesses in town, here and in other communities.

Twenty-four years ago on July 26, 1990, President George H.W. Bush signed the landmark legislation The Americans with Disabilities Act into law.  The ADA, as it is commonly referred to, is a comprehensive civil rights law that is supposed to guarantee people with disabilities the same opportunities as every other citizen to participate in mainstream American life – whether by employment or recreation, including purchasing goods and services, and to participate in state and local government programs and services.

The ADA is a federal law and grievances can only be brought through the Department of Justice.  However, New York State has its own legislation regarding rights for people with disabilities.  For example, the 2010 NYS Uniform Fire Prevention and Building Codes has Chapter 11 dedicated to Accessibility.  Section 1101.2 Design calls for “Buildings and facilities shall be designed and constructed to be accessible in accordance with this code and ICC/ANSI A117.1”

These regulations and guidelines are separate and distinct from the ADA building access guidelines and are under the jurisdiction of the NY Department of State. However, each municipality, unless it gives up its responsibility to its County, has the primary responsibility to see that the codes are in compliance.  And that responsibility starts with the Building Department and Inspectors.

While available reserved parking spaces are necessary, they are useless if residents cannot get into the store or restaurant of their choice once they have secured a parking space.

It has been said in years past that mobility and access issues don’t affect a large enough segment of the population in North Castle, a small municipality, but that does not negate the fact that the rights to equal access remain and should be upheld.

Every NYS municipality should be up-to-date on the regulations and codes regarding access; they must also make sure that there is compliance of these codes. In an older community with older buildings, there are exceptions to meeting the access requirements, but new construction and renovations of a certain magnitude do require compliance. With an ever-aging population and new communities opening, such as The Bristal Assisted Living that caters to older residents, access to shops and restaurants becomes more relevant. And sadly, sometimes an able-bodied resident may suddenly find him/herself with a debilitating injury or illness, and access becomes necessary.

Businesses should recognize that being accessible is beneficial as it can expand their customer base. Shopping areas such as Sir John’s Plaza and Armonk Town Center could benefit from better parking and less hindrances along the walkways. Restaurants that technically are accessible should not have tables that block entrances. Customers needing the accessible openings should not be made to feel intrusive if diners already seated have to get up and move.

While not a “popular” issue or one that does not affect “enough” people, access to businesses and services nonetheless is a right for all people and should be respected and striven for.

© Content copyright 2008 – 2014. AllAboutArmonk.com. All rights reserved.