Website: http://deafness.about.com/cs/cochlearfeatures/a/reimplantation.htm
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Just because you can not hear does not mean that you should stop you from living your dreams. There are people that when then they have a disability strive harder to live there life and reach for their dream. One example is man names Derrick Coleman. He is the starting Full Back for the Seattle Seahawks. Derrick has been hearing impaired since he was 6yrs old. This is just one example of not giving up and letting one thing hold you back.This article is about a young man named Aaron Golub who is completely blind in his right eye and suffers from restricted vision in his left. Golub will be playing collegiate football next fall at Tulane, but what he finds most frustrating about playing is not the long hours or hard work put into the game, but rather the attention his impaired vision gets instead of his performance. Golub began playing football when he was eleven years old; although there was some doubt whether or not playing a competitive sport would be a good idea, his parents and coaches allowed him to play anyway. After a couple years of playing, he began to love the sport and set a goal to eventually go on and play in college; however, he knew that with his current condition, there was only one position this could be attained. Golub transitioned to becoming a long-snapper where he prospered and is currently rated the nineteenth-best long snapper in the country. I think this article illustrated a reoccurring theme throughout the course; if you set your mind on accomplishing something, you can achieve it. Over the past eight weeks, we have heard countless stories from different families where at least one family member was suffering from a disability, but is seems like the one point to take away from all these is not to focus on the disability itself, but rather focus on overcoming the obstacles that may come along with it, which is exactly what Aaron Golub did.
Some people have such a significant lost in hearing that even a hearing aid device won't help them. Those people have gotten positive results from the cochlear implant. According to the textbook a cochlear implant is a tiny group of electrical cells that collect and send signals from the outer ear to the nerves of the brain. Its put in the inner ear and it is attached to a receiver that is implanted under the skin behind your ear at the base of the skull. World wide children and adults have received cochlear implant and without a doubt it has definitely helped and improved peoples ability to hear. Research shows that cochlear implants users perform significantly better on a variety of tasks than most hearing aid users that have a similar degree of hearing loss. The patient in this video is someone that has had a cochlear implant. He explains how his hearing was before he had the implant done (For Example when he was a kid he said that when his parents called him or someone was talking to him his ears would vibrate) and he also talks about how much it helped and improved his hearing loss after the surgery.
By: Mackenzie Smith In 1962 Rick Hoyt was born, and as a result of oxygen deprivation, he was diagnosed as a spastic quadriplegic with cerebral palsy. In the spring of 1977 Rick told his dad Dick that he wanted to participate in a 5 mile run to benefit for a Lacrosse player that had been paralyzed in a car accident. "Dad, when I'm running, it feels like I'm not handicapped." This was the beginning of thousands of races, marathons and triathlons the two would commit to. The greatest trek the two conquered was their bike/run across the US. A total of 3,735 miles in 45 days. In a triathlon, Dick will pull Rick in a boat with a bungee cord attached to a vest around his waist and to the front of the boat for the swimming stage. For the biking stage, Rick will ride a special two-seater bicycle, and then Dick will push Rick in his custom made running chair (for the running stage). Rick was once asked, if he could give his father one thing, what would it be? Rick responded, “The thing I’d most like is for my dad to sit in the chair and I would push him for once.” If this doesn't touch your heart I don't know what could. We have talked a lot in this class about the impact on families when it comes to having a child with a disability. The love that Dick has for his son Rick is exactly what any parents should want to emulate. Their motto is "you can" and they are showing that anything is possible when it comes to unconditional love. The following clip is shows a five-year-old boy with Autism. The text quotes, “Autism spectrum disorders show characteristic deficits in communication and social skills, as well as restrictive behaviors and interests, each person is unique” (324). The young boy in the clip below behaves very similar to the five-year-old boy that I work with at my service-learning site. Both of the boys have eye-to-eye gaze and can hear what you are saying to them, but the focus is not always there. The young boy in the clip does not have much facial expression. The description of the boy in the clip and of the boy I work with at my service-learning site show parallelism with the quote on page 333 of the text. It states “The symptoms in the social interaction category are marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures and gestures” (333). The body gestures and postures of the boy in clip and almost identical to the young boy I work with at the service-learning site. I find it very compelling to recognize the characteristics that are listed in the text I have been able to experience them at my service-learning site. Also I find it fascinating that both the boy in the clip acts so similar to the boy I worked with all summer. The similarities are unbelievable between the two. In lecture this week, we watched a video of Chris Klein. Chris suffered from Cerebral Palsy, and talked about the struggle to be normal when having a disability. When faced with a disability it can sometimes be hard for a person to do the things they want. Well, Noah Aldrich is a normal 8 year old boy from Idaho and his brother is Lucas. Lucas suffers from lissencephaly, a rare brain condition that leaves him unable walk, talk, or eat by himself. When the local YMCA was holding a mini triathlon for kids, Noah wanted to compete with his brother. Noah helping his brother Lucas in the triathlon, completed the 200 meter swim, 3 mile bike ride, and 1 mile run. Lucas showed a look of excitement after the race. Hopefully this story of Lucas and Noah helps a person with disability not to shy away from what they want to do.
http://www.mirror.co.uk/news/world-news/inspirational-boy-8-carries-disabled-3916872 After looking at the interactive lecture for week 5, I am so interested in the life of one of the greatest scientists in the world who is also a person with disability. Stephen Hawking, who have achieve more than most of the normal people, has been diagnosed with neuro-muscular dystrophy which causes paralyze and therefore creating many difficult for him to live a normal life.
Stephen Hawking has generated the hypothesis of the start of the universe. His achievements has impressed many people and expired many people. He is a great example of self-determination. He was diagnosis with the illness when he was young. the illness is undefeatable so that he become paralyze for the rest of his life. Although he was unable to do many thing that normal people can do like run, swim, or even taking shower by oneself. He did not become desperate and decided to make effort to the field of science. He is goal oriented people and made decision by himself. He study hard and finally created the theory that seems the most convincing one for now of the origin of the universe. Stephen Hawking also is an authority in disability rights. The speech he made in TED has told us that when the god close a door for you, he will also open a window. The following link is an article talking about how the decease has change the life of Stephen Hawking. He says that when he have not been diagnosed with the illness, he feel bored and life is nothing important. But when he knows that he has got the illness and has no longer than 2-3 years to live. He knows that the life is good and he has many things that wanted to do. These goal has lead him to the great success afterwards. His experiences told us that sometimes illness is not a bad thing, it may provides motivations of living a better life. Stephen Hawking is now 72 years old and is still having the greatest mind in the world. http://www.beliefnet.com/Health/Health-Support/Illness-and-Recovery/Lou-Gehrigs-Doesnt-Paralyze-Stephen-Hawking.aspx#
While going through this week's interactive lecture I came to the Sue Austin video about her and her wheelchair. I found this video especially moving and it made me open my eyes to see a wheelchair as more than just a restraint to that person. In the video, Sue Austin uses words like restraint, pity, and disabled to describe a wheelchair. These are all words that most people would think of at first. She goes on to describe the wheelchair as a symbol of freedom and a "portal" to more than she could do before. This made me think a lot harder about the object and I realized how big of a freedom symbol the object really is. A person with the inability to walk can't experience the breeze of moving in their face or the freedom to go somewhere by themselves. A wheelchair gives them this ability and for Sue Austin it gave her the ability to get back in the ocean.
I work many people in my water walking program who spend their lives in wheelchairs. The cool thing about my service learning group is that it gives the people a chance to get in the pool and move by themselves out of the wheelchair. I think this is very important for them to be able to do. While the wheelchair is an assistive object and a symbol of freedom, it is important for someone who uses a wheelchair to lose the sense of dependability on the wheelchair and move by themselves in the pool. The smiles on their faces never go away in the pool and its awesome to see some of the participants gain a lot of confidence and independence in the pool. I also know a lot of people who need a wheelchair in the community where I live. While I was in high school I worked with another program that took kids who needed wheelchairs out turkey hunting. I am a big hunter and enjoy the outdoors so it was very fun to share it with these kids. There were wheelchairs that had guns attached to them and could be controlled with a joy stick and allowed for kids in wheelchairs to shoot by themselves. Shooting s bird gave the kids a huge sense of accomplishment and put on huge smile on their face after seeing the bird go down. It was an awesome and unique way to spend time with some of these kids and make their lives a little better however I could. AS far as the wheelchair goes itself, some of them were unbelievable in the places they could go. During this weeks lecture and reading and after reflecting on the things I thought about wheelchairs, I went from thinking restraint at first to freedom now. http://www.scientificamerican.com/article/unschooled-in-hard-knocks/ This week in class one of the things we talked about brain injuries and concussions. A lot of what was talked about was concussion problems with athletes and adults and how serious of a problem it is in sports. It always surprised me how little concussion symptoms in child athletes and sports we not talked about as much. This article is about how a big an issue concussions are for child athletes. The article states that, "about 144,000 people aged 18 and younger are treated every year in U.S. hospital emergency rooms for concussions." That is a lot of children a year being treated for concussions for it not to be talked about as much.
Head injuries are the biggest risk in playing football. running at high speeds and colliding with one another, a head injury is bound to happen. first a little history lesson on the evolution of the football helmet. 1903 is where the first helmet shows up in football. the helmet is a thin strap of leather. the helmet was rarely worn by the players, the helmet was originally designed to prevent the dreaded "cauliflower ear". when head injuries were still on the rise they started re-inventing the football helmet. a full leather helmet came out, a harder leather helmet came out. the helmets eventually became a rule of the game. they started using harder leather and plastic in the 1950s. eventually they came out with the face mask in the late 1950s. the evolution grew to what you see on the field today. It is true that these helmets have prevented numerous brain injuries but are the modern helmets really as effective as we have been lead to believe? In a CBS article I read I became questionable as to if these helmets really do protect against TBI as effectively as they say. The study revealed that the helmets currently used on the field may do little to protect against hits on the side of the head which can cause TBI. I was shocked when I read on average, football helmets reduce only 20% risk to brain injury when compared to mot wearing a helmet. The tests being conducted on the helmets in the construction and engineering puts its main focus on direct linear impact instead of putting some focus on rotational forces. This is not to depress how much helmets do in protecting brain injury. in the test, waring a helmet reduces your risk of skull fracture by 60-70% and reduces your risk of brain tissue bruising by 70%. In short, these helmets are a BIG BIG BIG help in preventing TBI but it just makes you think and question whether we can create a better helmet that is more effective in all of the aspects of force on the head. http://philadelphia.cbslocal.com/2014/02/17/study-commonly-used-football-helmets-do-little-to-protect-against-traumatic-brain-injuries/
Going through this week's lecture, I found Sue Austin's video about the freedom of her wheelchair very powerful. Her story and artwork inspired me to continue to search for more forms of how individuals with disabilities showcase the freedom that wheelchairs allow them. Augie Webster, a 10 year old boy who has quadriplegic cerebral palsy, came home from school and asked his mom to help him make wheelchair art. Based off of skateboard artist, Sean Greene, his family helped Augie create artwork via his wheelchair. After winning first place in his school's PTA art contest themed "Together We Can," Augie continues to make his Wheelchair Action Art on paintings, T-shirts, mugs, and much more. This story shows how individuals proudly show the world that his/her wheelchair is not a limitation, restriction, or confinement. Instead, Augie shows the world that his wheelchair is a part of him and allows vibrant freedom in his life. The link to Augie's website is below. There you can place special requests for what Augie can make you or just read and share his incredibly colorful story. http://www.wheelchairactionart.com/home It has only been in the past 60 years that wearing a helmet when riding has become common practice. Similar to American football, equestrian helmets have also undergone major research and development during this time to increase its safety and technicality. The American Society for Testing and Materials - Safety Equipment Institute must now certify the protection level of all helmets produced with the intention of protecting one's head. Helmets have evolved over the years, from looking as similar to the traditional hunt cap or top hat worn, to now embracing the technical side with exposed airways for ventilation and mesh. Unfortunately, many riders still reject the idea of wearing a helmet on a regular basis. They argue that their horse is "calm" and "totally trained", even that they've "been riding for years", and assert that nothing could possibly go wrong. The attached video speaks otherwise. Courtney King-Dye is an elite dressage rider (Think Rafalca in the olympics). She represented the U.S.A. in Beijing in 2008. However, in 2010, disaster struck. Courtney was riding one of her horses, and the horse slipped on the ground and they both fell. Courtney was not wearing a helmet, and her skull was fractured. She immediately slipped into a coma, where she remained for a month. Thankfully, Courtney did wake from her coma, though not without damage to her brain and cognitive functions. She had to relearn how to speak, how to do basic personal care activities, and how to use her limbs again. For an athlete at peak condition, it was an incredible journey that she had to begin. Since the accident, Courtney has made incredible progress, through traditional therapy and hippotherapy, which is where the patient works with a horse to improve their balance and coordination. She is also the spokesperson for a new organization called Riders4Helmets, which works to promote the use of helmets in all equestrian sports. Hopefully, by sharing her story, Courtney can convince others of the importance of wearing protective headgear to prevent more tragedies. After completing the interactive lectures for week 6, I gained a whole new perspective on the importance of communication and its essentiality in forming relationships. Without communication, there are barriers to forming relationships and it is much more difficult for an individual to express themselves in a way that allows them to live a complete and satisfied life. When watching Chris Klein's Ted Talk, I was especially interested when he discussed the obstacles he encountered in the first 6 years of his life when he did not have access to adaptive communication devices. In these years, he was unable to express himself. He could not express himself. He could not form relationships with the people around him. He could not tell his mother how much he loved her. After viewing this Ted Talk in its entirety, I was able to connect what I learned to my service learning project. For my service learning, I work in a pool setting with individuals that have physical and cognitive disabilities. One of the women that I work with during my Thursday shift is blind and nonverbal, therefore, unable to communicate to express her thoughts and feelings. Whenever I work with her, I always talk with her as I would with any other woman her age. I speak with her like the adult that she is. Although she does not have access to an adaptive communication device while she is at the pool, she acknowledges what I am saying to her by smiling occasionally or reaching for my hand. I know that she is completely aware of everything that we talk about and the more that we interact, the more I pick up about her variations in body language and what certain motions mean.
Below, I have attached the link to an article that discusses the importance of communication and how to communicate correctly with people that have different variations of disabilities. I found it all very relevant to this week's topics and the course in general. In the article, there is a section that covers the "do's and don'ts" of interacting with people that have disabilities. The article also contains a section called "The Ten Commandments of Communicating". Each of the commandments offers great advice that everyone working with people that have disabilities would benefit from reading. I hope you all find it just as useful as I did! http://www.labor.state.ny.us/workforcenypartners/forms/communication.pdf Traumatic Brain Injury Traumatic Brain Injury is an aquired injury to the brain caused by an external force. This results in different impairments in the brain, but due to these impairments many different functions are affected as well. There are 6 common areas of the brain that have significantly different effects on certain functions in the human body. These areas in the brain are the Frontal Lobe, the Parietal Lobe, the Temporal Lobe, the Occipital Lobe, the Cerebellum, and the Brain Stem. Frontal LobeThe Frontal Lobe is located at the front of each cerebral hemisphere in the brain. One of the main functions of the frontal lobe is decision making as well as controlling behavior. When damaged, problems can arise in emotions, sexual activity and libido, initiating movement, sequencing, attention, problem solving and more. The following video is a woman who has a TBI to her frontal lobe, and she describes some of her experiences of difficulties she encounters. For example, she often forgets why she went into a certain room; she remembers walking there but doesn't remember why. Interestingly, you will notice that even though she has TBI in her frontal lobe, her circumstances are not that severe showing that depending on the injury and the amount of your brain it effects, you can have very different consequential functioning impairments. Parietal LobeAnother lobe effected by TBI is the Parietal Lobe, positioned directly behind the Frontal Lobe. This lobe is the main sensory tool for touch, as well as academic skills, hand-eye coordination, spatial orientation, directional understanding and more. This area is where dyslexia is developed. Due to damage of this lobe affecting spacial orientation and direction, one consequence of TBI to this area includes problems with balance. It may seem very easy for someone without Parietal Lobe Damage to stand on their hands with their feet against the wall, but someone with this condition may have great difficulty with this task. The video below is a demonstration of a woman with Parietal Lobe TBI attempting to do a hand stand against a wall and how she struggles to stay balanced. Temporal LobeThe Temporal Lobe is located underneath the Parietal Lobe and behind/under the Frontal Lobe. The main importance of this lobe is memory and especially short-term memory. Thus, people with TBI to the temporal lobe may have sufficient memory loss as well as problems with identification, facial recognition, selective attention, spoken word, and more. Also, Traumatic Brain Injury to the Temporal Lobe is the leading cause of Temporal Lobe Epilepsy. The following video is not on TBI on the temporal lobe, but it is a blog cast about a woman with Temporal Lobe Epilepsy and her problems with it. She keeps a seizure log and talks about how her sleep problems and dream problems all have to do with her Temporal Lobe Epilepsy. She has a 23+ seizure blog playlist about her Temporal Lobe Epilepsy. Occipital LobeAnything seen by the eyes, including dreaming, is due to the work of the Occipital Lobe. This lobe is located at the back of the brain, behind the Parietal and Temporal Lobes. TBI to the Occipital Lobe can cause problems with vision, locating objects, hallucinations, reading and writing, and more.The following video was made by a group of college students to demonstrate the effects of what it would be like to have damage to the occipital lobe, including depth perception and color recognition. They even demonstrate what it would be like to not be able to recognize a book, and trying to identify it by using echolocation like a bat. Although I find this part of the video to be a little out of place, the rest of the video is very informative of the importance of the Occipital Lobe. CerebellumThe Cerebellum is at the base of the brain and on top of the spinal cord. It seems that this part of the brain deals with functions that were previously mentioned in all of the lobes including balance movement, coordination and motor skills. Other functions that the Cerebellum controls include equilibrium, fine motor skills, and postural controls, but the most important function of the Cerebellum is motor control. The video below is a speech by a man with TBI to the Cerebellum. He talks about his struggles with the condition; for example, he "dances like a grandpa" and had great difficulty doing karate because of loss of motor control. Brain Stem The Brain Stem controls functions that allow us to survive, and often we take it for granted. For example, it regulates body temp and homeostasis, breathing, swallowing, heart rate, etc. We never think about the part of the brain that controls these essential functions of our body, but when damaged it can be very detrimental. One consequence of Brain Stem damage is Vertigo. When I was in high school, I had a friend with vertigo and while walking she would often lost balance and fall and it was very difficult for her to walk straight. Also, she seemed to be very unable to focus her eyes on anything. The following video is of an old man and his experiences with vertigo, and how easily it is to be put off balance. Traumatic Brain Injury can effect one or more of the previous parts of the brain, and thus can have very detrimental effects to the body.
One of our readings from last week was the "Disability Gulag" which focused on disability rights from the perspective of a woman with a disability. One of the key points of that article was that Harriet, the author, and others had to fight to not be placed in an institution for individuals with disabilities. Harriet and her peers described being placed in an institution as a "gulag" because once you went to the institution you lost the majority of your freedom. While I was visiting family in Ohio a couple weeks ago, I came across an article in their Columbus newspaper entitled "Group says Ohio is violating Americans with Disabilities Act". As I read the "Disability Gulag", I thought back to this article I had read a few weeks before hand. There was many disturbing similarities. I was disheartened that 11 years after the "Disability Gulag" was written by Harriet, that there was still issues with the concept of institutions for individuals with disabilities.
A legal advocacy groups for individuals with disabilities in Ohio sent a letter to state officials arguing that the state of Ohio was violating the Americans with Disabilities Act. They claimed that too many individuals are being kept in these institutions because the state is unable to provide the support they need to live and work within the community. The letter sent by this advocacy group included the stories of three disabled individuals in Ohio who live in institutions despite their strong desire to leave. The Americans with Disabilities Act states that all states must serve people with disabilities in setting that are appropriate to their needs and in a way that most integrates them into the community and in the least restrictive manner. Harriet describes how her peers and herself had to testify before a community to urge the government to provide them the funding they need to function within the community. Harriet states how it is easier for the government to squeeze individuals into institutions rather than to address their individual financial needs. This problem mirrors the argument made in the letter written by these Ohio advocates. The letter claimed that too many disabled individuals were in institutions or on their way into institutions when all they needed was financial assistance that would allow them to function and participate within the community. As I saw within both the Disability Gulag and this newspaper article, individuals with disabilities view institutions as a gulag because once you enter the institution you lose the freedom and your voice as an individual. One of the three individuals who shared their stories in the article described life in an institution as a "form of incarceration". The name "Americans with Disabilities Act" implies that the American people stand by those who are disabled. It is time for the government to stand by these individuals and give them the rights they deserve. Article: http://www.dispatch.com/content/stories/local/2014/07/08/Group-says-Ohio-violating-the-Americans-with-Disabilities-Act_.html Letter: http://www.dispatch.com/content/downloads/2014/07/DRO_to_Governor_Kasich_et_al_re_ICFs-IID.pdf This week we learned that cerebral palsy is a neuromotor impairment. These impairments are abnormalities or damage to different areas of the body like the brain, spinal cord, or nerves which send impulses to the muscles of a person's body. Under the IDEA, cerebral palsy falls under that category of orthopedic impairments. The severity an Individual with cerebral palsy can range to either more or less severe involuntary movements of the body. From chapter 13 we learned the 4 most common types: spastic, athetoid, ataxia, and mixed. Spastic CP means muscles are tighter and cause an individual to experience uncoordinated stiff movements. Athetoid CP means movements are more contorted and abnormal. Ataxia CP causes a person to have poor balance. After watching Chris Klein talk about his experience with cerebral palsy and finding a different video about a woman with CP, I was fascinated to see the difference between the two individuals. Although they experience and talk about their lives differently, they strive for the same respect and understanding. Like I mentioned, Maysoon Zayid takes a different approach to how she discusses cerebral palsy, race, and equality. The stand-up comedian, actress, philanthropist, and advocate for individuals with disabilities, uses humor to change perspective about individuals like herself. Just like Sue Austin and Chris Klein, Maysoon is able to use a different tactic when it comes to discussing her physical disability that people often feel uncomfortable confronting. Growing up, Maysoon was told by doctors she would never walk because of the cerebral palsy. In her TedTalk she enlightens the audience with her humor while making it clear that race as well as living with disabilities is an important topic of conversation. On a serious note, I admire the very good points she makes, but I throughly enjoyed her amazing sense of humor.
After learning about disability rights and the progression of this movement in lecture, I became interested to see how far our society has come with this issue. I researched current cases that are happening on disability rights, and I was shocked to see that this is still a prevalent battle facing many people with disabilities. There seems to be a common theme among a few that I have read about; the person with a disability is not being treated in the same way as the other people without disabilities.
In recent years, we have seen many situations where former NFL players are suing the league due to lingering brain injuries after their retirement. There is an ongoing case where more than 4,500 retired NFL players are suing the league, claiming that they were denied information regarding the severity of head/brain injuries they experienced during their professional career. The two sides are working on a settlement, where the league would pay the former players who are currently suffering from conditions such as Parkinson's or Alzheimer's disease; however, there are several players who feel that cash is not enough to "call it even". Many professional football players experience some form of traumatic brain injury after they retire, but are unaware of it due to lack of knowledge and
Article: http://www.nytimes.com/2014/07/23/sports/football/nfl-concussion-settlement-divides-former-players.html?_r=0 Traumatic brain injuries are unfortunately a topic on which I am well versed. I am pursuing a degree in athletic training, and have worked frequently with athletes who have experienced concussion, a form of traumatic brain injury. The CDC defines concussion as, “a type of traumatic brain injury (TBI) caused by a bump, blow, or jolt to the head that can change the way your brain normally works. I have found that the severity of these injuries is not well appreciated, and in fact, often concussion is taken very lightly. Perhaps because concussion is considered to be a more mild form of brain injury that isn’t usually immediately life threatening. Although this may be the case, it remains that many individuals who experience cerebral concussion go on to experience multiple concussions later in life, herein lies the problem. Research by Guskiewicz et al. studies the the association between recurrent concussion and late-life cognitive impairment, and finds that individuals with “three or more concussions have a fivefold prevalence of MCI diagnosis and a threefold prevalence of reported significant memory problems compared to those without a history of concussion.” Research like this is mounting, and with the retirement of professional athletes we are starting to becoming aware of the severity of this injury, that being said, we are simply not taking concussion seriously enough. In this video entitled, “The League of Denial: The NFL’s Concussion Crisis” the severity of concussion and disability that ensues is very blatantly documented. Although shocking, eye opening, and often hard to watch, this video is absolutely worth watching, and for me has been one of the most life-changing documentations regarding disability in sport and concussion.
The League of Denial: The NFL’s Concussion Crisis: http://video.pbs.org/video/2365093675/ http://www.cdc.gov/concussion/ http://www.ncbi.nlm.nih.gov/pubmed/16239884 CHARGE Syndrome, which is also commonly known as the CHARGE Association, is a rare genetic disorder that involves different medical and physical challenges. It is caused by a mutation in one gene, the CHD7 that is on chromosome #8, and this gene is known to be a regulator turning other genes on and off. Charge Syndrome occurs in about 1 out of every 9-10,000 births and even though it is genetic there hasn’t been a link found to the incidence of CHARGE and family history. For parents with one child with CHARGE it is said that the incidence of having another child with the syndrome is 1-2% but for the risk of children with CHARGE to have a child with it is said to be about a 50% chance, according to the CHARGE Syndrome Foundation’s Website. Since CHARGE is actually an acronym for the six characteristics commonly seen in those with the syndrome, in order for someone to be diagnosed as having CHARGE Association or Syndrome, they must show at least four of the following six characteristics. C - Stands for coloboma, which is a congenital condition that results from teardrop or abnormal shape of the pupil as well as other eye abnormalities that may leave an individual with difficulty seeing depth perception, visual acuity and even affect their eye's sensitivity to light. H - Stands for heart defects, and these can range in individuals as minor all the way to life threatening conditions A - Stands for atresia, or known as complications to the respiratory system R - Stands for retarded physical growth (I think they could update the acronym or use a better word instead of the R one) but it refers to the idea that some may have stunted growth in limbs or torso, and also may even have intellectual disabilities G - Stands for genital abnormalities, and while these are typically more common in males, the children with CHARGE often have incomplete or underdeveloped genitals E - Stands for ear defects and deformities that either can be in the middle, outer or inner ear, and these often cause hearing loss either in the mild form or even profound forms as well. I personally have never heard of such a condition as CHARGE syndrome, and I also don't know anyone personally with the syndrome but the book also included that children who have the syndrome, or have at least four of the above characteristics typically show high levels of anxiety or even have compulsive behaviors. Since the book didn't include a large section of information about CHARGE, I was curious to learn more so I visited their website, http://www.chargesyndrome.org/about-charge.asp to learn more information. I found that the most common characteristics shared among those with CHARGE syndrome are vision loss due to coloboma (seen in 80-90% of individuals), hearing loss and balance problems due to inner ear deformities (90% of individuals), cranial nerve abnormalities that leave individuals with lack or decreased sense of smell (90%-100% of individuals), and also swallowing and aspiration difficulties due to the cranial nerve abnormalities (70-90% of individuals). It also listed that 90% of individuals with CHARGE syndrome also have low muscle tone, and that it’s very common that due to this low muscle tone they also have scoliosis and a short neck. The website also includes reference points for parents and families as well as conferences, seminars, support groups, and other helpful websites. Below are some pictures of the characteristics that children with CHARGE Syndrome exhibit.
I found it very interesting to learn about the Disability Rights movement and the history behind this cause. In an article I read about a presentation at a Workers World convention, I continued to learn about the many ways individuals with disabilities faced, and continue to face, opposition and discrimination. The woman who spoke at the convention was a representative for the caucus of people with disabilities. She explains in the article that the caucus serves to address and remedy the many social and political issues that surround individuals with disabilities. Often times we view disabilities as a medical or psychological health issue, and neglect to notice how individuals with disabilities are affected in social and political aspects of daily life. The caucus' goal is to "strive to be highly respectful of, to learn from, and to build solidarity with each other."
In reading this article I learned about many issues that individuals with disabilities faced historically. For example, I learned about wage discrimination and how the 1938 Minimum Wage Act excluded individuals with disabilities. Although progress has been made, there is still some lingering evidence of such discrimination and exclusion today. In the work I have been doing for my service learning project, I have witnessed many of the ways that Disability Rights influence individuals with disabilities today. I have taken many bus rides on wheel chair accessible busses with the man I assist. It is wonderful that the city of Madison provides public transportation access to all persons, but I have also witnessed how this service is not entirely equal for those individuals with disabilities. To utilize a bus service that is wheel chair accessible in Madison, the bus must be scheduled days in advance. The city does a great job of making sure there are enough busses to provide this service throughout Madison, however, there is a level of inconvenience and required planning for individuals with disabilities that individuals without disabilities do not need to account for. Another way I have witnessed Disability Rights is through services provided by the VA hospital. I have learned about the various services, such as financial assistance for basic care needs, that the hospital provides for it's patients. These are only a couple of examples of Disability Rights being granted to Individuals with disabilities. There are tons of ways individuals with disabilities lives have changed throughout history through the enactment of various Acts and organizations that have formed. Unfortunately, however, despite the many political and social efforts made there is still much progress to be done. Article: http://www.workers.org/articles/2013/12/20/civil-rights-people-disabilities/ When Ben Jackson was born with cerebral palsy, doctors told his parents what they thought his life was going to be like. They explained that he might not even be able to take care of himself. As Ben grew up, he was very energetic and passionate about sports, where he really showed great determination and work ethic when attempting various sports, even if he was not good at any of them. When he was in middle school, he told his parents he wanted to take on wrestling “because he wanted to challenge himself both physically and mentally in one of the most demanding sports out there.” Ben lost all 24 of his matches in the first year of wrestling, but he did not quit. He noticed that every match he improved more and more. Ben wanted to stop being a victim of his disability and he was so persistent. He trained very hard, pushing himself to be the best he could be. “[He] didn’t know who [his] competition was going to be, but [he knew] that they weren’t up at 3 a.m. watching wrestling videos.” His next year in wrestling, he won his first match. He did not only attribute his success to himself, but to his family, coaches and teammates who continuously supported him. He then went on to attend college and began training for the 2016 Paralympic Games for weight lifting. In college, he is majoring in communications with the hopes of becoming a motivational speaker regarding disability issues in the future. Ben is truly an inspiration to all, to those with a disability and those without. Ben will never be finished and will continue to always challenge himself. “What keeps me going is the fact that I truly believe that I am capable of changing lives. I just want to be one of those people who is always remembered for leaving the world a better place than when I entered it.” -Ben Jackson http://matthewbraegelmann.efoliomn.com/Uploads/Developmental%20Disabilities%20Article.pdf In this week's interactive lecture about physical disabilities I was intrigued by the lady who learned to scuba dive and swim despite being wheelchair bound. It was amazing to see her effortlessly swimming underwater. I thought it was very cool how recreation helped her to redefine herself and view her disability in a new light. The article I have attached above discusses the benefits of recreational activity, specifically, the improvement of self - physical and social. With the aid of assistive and adaptive technology, people with disabilities are becoming increasingly less limited when it comes to recreational activity as is evident in the ted talk video. I think that recreational activity is obviously physically rewarding but also socially beneficial as well. People with disabilities are often ignored or avoided. Recreation offers a chance to socialize and build relationships. I believe that taking part in these activities also helps to alleviate the negative stigma attached to physical disabilities. Recreational activity can help to redefine a person's perception of self and show to others that they are not defined by their disability. The confidence and positive self-image gained through recreation can translate to other aspects of life and result in an overall improvement in the quality of life. |