Edwards Syndrome Research Paper

Chairs are banging around, people are rushing within the room trying to find the keys to the closet, dinging plays from the handbells as they accidentally hit one another, all while people boast about their weekend adventures. Smiles appear at the top of the stairs as people arrive. Every Tuesday in the small basement of the local church, people get together to form the Angel Handbell Choir. The difference between this choir and the usual handbell choir is that the members all have some sort of mental disability. In this group there are about twenty people, a couple of them being Becky, Darlene, Ryan, Chris, and Thomas. Each of these people having some sort of disability, but that isn’t what makes them unique. This choir was formed not only

for the entertainment of these members but also to show outsiders to not pity them, and rather than stereotyping them, they should accept them. The Angel Handbell Choir is a community that shows people that mental disability is a small characteristic of these individuals, and to also create awareness that the overused word “retarded” to stereotype them is belittling and offensive.
Becky, the first to always arrive comes down the rickety set of stairs with sparkling eyes. At first glance she catches a persons eye and quickly takes them aside to give them their weekly present, a card. Inside this card she either writes a happy birthday or happy thanksgiving with a “love becky”. She then starts to talk about her week since its been too long since she has seen you. Becky was diagnosed with autism and bipolar disorder when she was just a little girl. Working through these problems of hers not many people know how to handle it. One day she is praising the world while the next day she is cursing its nature. Becky’s bipolar disorder has cost her many friends just because most people don’t know how to put up with it. This disorder is mostly inherited genetically and is also known as manic-depressive (Bipolar Disorder). Becky didn’t show signs until she was about seventeen years old, since most bipolar disorders develop between a persons teenage years to their young adulthood. Most people looked at Becky and said she was a lost cause, with autism already there and also being bipolar. What they don’t understand is the talent and charisma that comes along with these problems.
Shouting comes from the stairs as Darlene’s nasal voice travels throughout the whole room. She waddles in yakking on about how no one is ever here on time and that these practices are a big deal that should be taken more seriously. She starts to rub her arm and asks to be walked over to the chair. Dealing with cerebral palsy all her life, she’s had to rely on people to get her from point a to point b. Cerebral Palsy is a neurological disorder that affects a persons muscle coordination (NINDS Cerebral Palsy Informational Page). This disorder is usually due to brain damage during the child’s creation before being born. Darlene has tetraplegia cerebral palsy, which means all four of her limps are paralyzed, one being less affected than the rest (Types of Cerebral Palsy). There are many other classifications like the severity, motor function, and more dealing with cerebral palsy. Out in public most people think she is just weathered with age and that’s why she can’t walk around much or they think she is just the generic “retarded”. What they don’t know about Darlene is the amount of commitment she puts into everything, including handbells. With her two arms being mostly paralyzed, peers around her doubted her abilities to wring handbells, they would tell her it’s impossible. To which she would say her famous quote, impossible says I’m possible. She proved them wrong by not only playing the handbells but becoming an artist. Every first Friday of the month, Mercersburg holds a town get-together where she sells her own artwork. Darlene is what you call a free spirit that doesn’t understand the norms of society.
Turning around from Darlene, Ryan comes running into the room, screaming “I’m here!

I’m here!”, being the celebrity of the group everyone soon swarms over to him. He then proceeds to telling his weekly story of everything he has accomplished. Suffering from Edwards Syndrome, he has been looked at differently from the other citizens of Mercersburg being called stupid or retarded. Edwards Syndrome is also known as Trisomy 18, and is created during cell division within meiotic disjunction (What is Trisomy 18). The handbell community calls him a miracle because it is very rare for an individual with Edwards Syndrome to live past their first birthday. Scientifically speaking, before the child’s birth they create three +18 chromosomes instead of the usual two (What is Trisomy 18). Ryan is diagnosed with one of the types of trisomy, full trisomy, which is the most common. The other two types of trisomy being partial trisomy 18 and mosaic trisomy 18 (What is Trisomy 18). Ryan ever since he was a child was put down from his peers about not being able to do anything without help, until one day he accomplished tying his shoe in which his saying, “I did it myself!” came from. Now every note played by him gets followed by his popular saying. Most people when they see Ryan ask their parents what they did wrong, but the problem with Edwards Syndrome is it is not hereditary. Ryan doesn’t let his disability hold back his talent, and also doesn’t scare him with trying something

new.
One by one an old face walks through the doors with stories to tell and ideas to persuade, out of all of them the majority have some form or type of autism. Autisim is a complex developmental disability and has many different affects on a person (Autism Fact Sheet). Generally speaking, Autism hurts an individuals speaking and interaction with others. Autism today still does not have a cure, even though “prevalence of autism had risen 1 in every 68 births in the United States- nearly twice as great as the 2004 rate…” (About Autism I Autism Society). Every person in the choir has dealt with some type of obstacle autism has given them. For example, Fred (who is now 34) just learned how to speak about ten years ago while Chris has trouble looking a person in the eye without having a panic attack. As an infant autism impacts the development in the brain causing malfunctions. It is a disability though, not their life.
The Angel Handbell Choir has become known for achieving the impossible to the citizens of Mercersburg. By giving these people handbells it lights a spark in them, and in their viewers. When someone sees a mentally disabled person the first thing their minds do is label them as a disabled person. Not person with great handwriting, or person with beautiful blue eyes, but a retard. Now this isn’t because the person is a bad person but more so because they have grown up being taught to label the mentally disabled like that from their parents. It is like asking a kid what religion they believe in when they are only ten, whatever their parents believe, they believe in it too. Meaning, these “retarded” people grow up actually thinking they are retarded. Aesop Jr., an author from Tufts College, loosely talked about in an article how if a fish grew up trying to learn how to climb a tree, it would assume it is stupid (Aesop Jr). These mentally retarded people are told from day one that they are incompetent to do the things normal people do, but what if you look at it from a different perspective? What if the “normal” people are incompetent to do the things mentally disabled can do. For example, if you went up and asked Ryan who played in the super bowl in 1978, he’d have the answer rolling off his tongue in seconds. Ask a common joe that question and you’ll be standing there for a good five minutes while he looked it up on Google. By lowering these people into a stereotype it is not only hurting them but the future society learning from the present ways.