Peter Wong and disABILITY

Long time no post! I got a little lazy over the holiday break... but now that I'm back at Stonehill this blog will be in full swing again!

Anyway,I'm a political science and communication double major here at Stonehill, so I've been working pretty hard to meet those requirements... but now that I am a 2nd semester senior I have two elective spots, so I signed up for two healthcare classes taught by Professor Dahlin- HC 103 Introduction to Gerontology and HC 170 Disability? I decided to take gerontology because as some of you may know, in addition to disABILITY rights issues, I also am extremely passionate about elder issues.

But anyway, HC 170 Disability? is described as follows:

What do the words disability, handicapped and challenged really mean? In what ways am I disabled and how can I use that knowledge? What has science contributed to our challenged populations? What are the personal and societal values toward challenged populations? How have history and religion contributed to those values? Am I, are we, doing enough? Students review personal and societal fears about disability, learn to confront and change negative attitudes and values, understand medical causes, effects and treatment of a wide range of clinical disorders, and develop a belief and value system which includes positive attitudes toward the emotionally and physically challenged.

I entered into my first session of Disability? this past Thursday for a two and a half hour session, and was amazed by what I had learned. Professor Dahlin had brought in his dear, long-time friend, Peter Wong to introduce us to the subject of disABILITY.

Dahlin explained to us that over 25 years ago when Wong was a teenager, he had met him at Lakeville State Hospital. The professionals at the hospital had diagnosed Wong as profoundly developmentally disabled, and they did not expect him to live much longer. According to an article in the Boston Herald written in 1997, the hospital workers believed that, "with his condition, the result of oxygen deprivation during birth, Wong could not swallow and would probably choke to death." Dahlin, an occupational therapist, had quickly figured out that Wong was definitely not developmentally disabled. He had cerebral palsy and was tested as having an IQ measuring over 140.

The National Institute of Neurological Disorders and Stroke (www.ninds.nih.gov) defines Cerebral Palsy as such:

"The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse."

Anyway, as an occupational therapist, Dahlin had spent a month with Wong, teaching him how to swallow so that he would never have to be fed with a syringe again (which was what the Lakeville State Hospital workers were doing). Dahlin and Wong had reconnected years later, when Wong was already an adult, living a successful life in an apartment in Park Square. Wong is famous in the city of Boston- not for his disABILITY, but for the cart he runs right in front of the Burberry Store (at which he frequently shops at). He started out selling beverages, but later on he and Dahlin had developed a line of hats (cleverly named HandiCaps) which proved to be a very successful business endeavor.

Wong had never let his disABILITY stop him from doing what he wanted to do. In class, he had told us that Cancun was one of his favorite vacation spots, and he had visited there frequently. He has met numerous celebrities and athletes. A picture of Wong is even displayed in the Smithsonian! Wong is very friendly and talkative, and willing to answer questions about himself. In class we all asked him questions about his favorite athletes, whether or not he was involved in disABILITY advocacy, and even what the hardest part of having a disABILITY was. He answered all of the questions thoughtfully and truthfully.

Dahlin had invited Wong to the first class of the semester since almost the very beginnings of him teaching the class. I think it was great to have him there, because any preconceived notions that anyone in the class had about disABILITIES were thrown out the window.

The question mark in the title of class is important because it emphasizes the question what does being disABLED really mean? I think that's why I named my group The disABILITY Enlightenment Project. I want to emphasize the ABILITY and pay less attention to the "dis-."

I am excited for this class and I am really glad I got the chance to meet Peter Wong.

Anyway, for all you students, don't forget! First disABILITY Enlightenment Project meeting of the semester tonight @ 9PM in Duffy 219! Be there or be square!

Deaf Culture

So, earlier in the semester I wrote a research design paper for my Communication Theory capstone class on Deaf culture, something that I have recently developed an interest in. So I figured I'd use some excerpts from my paper to explain it a little better.

Deaf culture is something very few people understand or really even acknowledge as a culture in and of itself. Many do not understand the difference between “Deaf” and “deaf.” According to Padden and Humphries (2005, p. 1) “Deaf” describes the cultural practices of a group within a group. Padden and Humphries explain that the larger group, “deaf” refers to the “condition of deafness, or the larger group of individuals with hearing loss without reference to this particular [Deaf] culture.” People who are “Deaf” see hearing loss as a difference rather than a disability. They also see it as a culture which could be comparable to an ethnic identity and this is because they have their own language and cultural beliefs. To persons whom identify with Deaf culture, being Deaf is no different than being African-American, Asian, or Latino. It is also important to recognize that one can be Deaf without being deaf and one can be deaf without being Deaf.

With the relationship and communication between deaf and hearing come issues of power and superiority. Harlan Lane, in his chapter “Construction of Deafness” in The Disability Studies Reader (ed. Davis, 2006, p.84) he quotes Deaf leader MJ Bienvenu as saying “How can we fight for official recognition of ASL and allow ourselves as ‘communication disordered’ at the same time? … We are proud of our language, culture and heritage. Disabled we are not!” Oftentimes language constrains D/deaf persons, automatically putting them in a position of less power. The first reason is because clearly the primary means of communication in the United States is done by speaking English. D/deaf persons who chose to communicate using ASL are already at a disadvantage because they are already in the minority. Personally, I have always had a problem with the word “disability” because the prefix “dis-” means away, not, or negative, therefore it gives the connotation of being the opposite of ability. Language oppresses disabled persons and words and phrases like “deaf,” “hearing impaired,” and “hard of hearing,” often carry a negative stigma.

Cochlear implants are a subject of debate in the D/deaf community—they are devices that are implanted surgically that enable persons who are profoundly deaf or hearing impaired to receive a sense of sound. It is important to understand that these are not amplifiers and that results do vary with these devices depending on factors such as age. These devices are a subject for debate because many members of the D/deaf community see them as a threat to Deaf culture Lane (1992, p. 216) explains that these implants are aimed to regulate and eliminate deaf culture, language, and community. Because many see Deaf culture as similar to an ethnic group and a defining factor of their identity, asking a person to consider a cochlear implant would be like asking a black person to consider changing their skin color to white. By changing a person from D/deaf to hearing, you are altering their identity and changing the way they integrate into society and how that person sees him or herself as a human being. I previously mentioned issues of power dynamics between deaf and hearing, and by implanting a cochlear implant in a person, one is assuming that hearing is better than deaf and that deafness is something that needs to be cured like a disease.

Basically in my research design paper, I wanted to learn more about this idea of Deafness and how it affects communication dynamics within the D/deaf community, particularly within families that have conflictual views on the subject. I also think that hearing people don't understand why D/deaf persons would want to continue being deaf. I believe we need to work towards a mutual understanding not only between deaf persons who identify with Deaf culture and those who don't, but also hearing and D/deaf persons.

A lot of my influence for this study was based on a documentary titled Sound and Fury by director Josh Aronson. The tagline of this documentary is “If you could make your deaf child hear, would you?” It follows a few sets of interrelated families and their struggles in decision making on the subject of cochlear implants. By watching this film I was able to learn a lot about Deaf culture—things I would not have picked up on by just reading about it.

Check Out This YouTube Clip!

I liked this film because although there is a lot of literature on deafness as a "condition," there is not a lot written about Deaf Culture. This 2000 film was definitely something that had to be created to increase understanding about the topic.



I also found it interesting how some communities are hotspots for Deaf culture, whereas other communities do not even think about increasing options for the D/deaf community. When I was in D.C., I felt like things were much more accessible for the D/deaf community. Like if I attended a government meeting, there would be ASL interpreters as well as sternographers recording everything that was spoken and projecting it up onto a big screen. Hopefully one day this will be the norm everywhere.

Anyway, that is all for today!

P.S. Everyone is almost on break! That means no excuses you guys! Contact me to write a blog post of your own

Follow-up on last post

So I just got an E-mail from Father Denning about the content of my last post, where I explained that there were a series of list-servs that involved language towards the gay community. Father Denning (Vice Presiden for Student Affairs) said the following:

Dear Students,

During this past week I have been made aware of a string of emails on the student listserv that contain malicious and offensive statements. I want to both acknowledge and thank those students who courageously challenged their classmates about using either hurtful or biased language on the student listserv; however, I am still, as are my colleagues in the office of Student Affairs, very troubled by the language used and the tenor of the discussion. On Monday, I, along with Pauline Dobrowski, Dean of Students, went to the Student Senate to raise our concerns regarding this discussion and the overall use of the student listserv. The Senate felt that the listserv can be an effective tool to communicate with the student body about activities on campus, as well as to raise issues of concern.

Because of advocacy by the Student Senate and Student Government, the listserv will remain in its current form at this time. However, please know that if there is another string of emails that speak against the dignity of the human person, those students who are found responsible will, minimally, lose their access to the College’s email service. In addition, the College will, at that time, reevaluate the overall value of the listserv as it currently exists on our campus.

I want to remind you of a core value of Catholic Social Teaching and Stonehill College: the dignity of the human person. There are no qualifications on that dignity. When a member of the Stonehill community is verbally attacked, harassed, or belittled because of their race, gender, sexual orientation, culture, disability, or religion, then not only that person who is the target, but also our entire community, suffers greatly. I would encourage us all to think again about the words we speak and write to one another. Do our words reflect our core values and the core values of this institution? I would also remind you that all of us are accountable for what we have written in the public domain, which includes the student listserv.

I know this is the last day of classes and imagine that you are all extremely busy with finishing papers and preparing for finals. Please know of my thoughts and best wishes for you at this time. I hope that the winter break is a moment to enjoy family and friends and that you find a moment or two to relax. I hope, too, that as we return on the weekend of Martin Luther King, Jr.’s birthday, we might find reason to work together to shape the Stonehill community so that it reflects our core principle of upholding the dignity of the human person through our treatment of each other with respect and compassion.

Sincerely,
Fr. John

I think it was great that he took a stand against the malicious and offensive statements people were making in a public domain, and that he stood up for the idea that no member of the Stonehill community should be verbally attacked, harassed, or belittled because of their race, gender, sexual orientation, culture, disability, or religion.

Like I said before, I know this is a disAbility blog and the content of the listservs did not involve disAbility, however I think if the disABILITY Enlightenment Project is going to make progress in the Stonehill College community, then it needs to be in an environent that is welcoming and accepting of all persons.

Although I also think we can't really scare people into acceptance by threatening to take away the listserv or loss of E-mail access. I think it is important that we keep talking about issues like race, sexuality, and disAbility so people understand people different from themselves, and instead of making fun of them, belittling them, and harassing them, they will learn to embrace and accept them.

Anyway, that's all for today folks! Happy studying!

Acceptance on Campus

Lately I've been thinking a lot about acceptance of differences on the Stonehill College Campus. For those of you who don't know, there has been an ongoing battle over the past few days via the college listserv about homophobia and gay rights. It started out as a "joke" that involved some student hacking into another student's E-mail to send a message to everyone claiming that he was gay and coming out of the closet.

Unfortunately I don't have the E-mails saved anymore, I deleted them when the conversation just lead to people complaining about listservs and talking about pokemon? But basically it made me realize that a lot of students have differing opinions on not only gay rights, but the word "gay" itself. People throw the words "gay" and "fag" around all the time as insults, without really thinking of the meanings behind the words and who is offended by that.

It got me contemplating about what would have happened if someone sent out an E-mail claiming, "My name is so-and-so and I'm a retard." Words like retarded and cripple are used all the time in some peoples' daily vocabulary.

If someone does something "stupid" someone will say "What are you, retarded?" or if a ref makes a bad call, I guarantee you an angry fan will yell out, "What are you, blind?" or if someone says something and the person can't hear it, he or she will say, "What are you, deaf?" The list goes on and on.

I really think we need to start thinking more before we speak. Words like gay or retarted or blind shouldn't be used as insults. I think language plays a big part in not only disAbility rights, but rights of any minority or marginalized group of people.

Last year during our mini poster campaign, we had a slogan that said, "Don't call me a blind man. I am a man who happens to be blind. I am a man first." and other posters that said things along those lines.

I would type more, but alas, finals are upon me. Please comment! Also, feel free to contact me at agotsell @ students . stonehill . edu (without the spaces) if you want to write a blog post of your own and I can add you to the list!

Happy studying everybody!

Ally

Anybody See The Summit Article?

So, in the November 19th issue of The Summit (which seems like ages ago) Jeff Compagna wrote an article on the disABILITY Enlightenment Project. For those of you who don't know, The Summit is Stonehill's student run newspaper which usually comes out biweekly.

Anyway, I knew that there was going to be some sort of article, because Compagna had interviewed me via E-mail, but I had NO IDEA that it was going to be on the front page! This is great publicity for us and I am so excited that the editors decided that we were important enough for the front page!!

For those of you who haven't read the article, it basically talked about what we are all about and how we hope to gain awareness about the subject of disABILITY. It mentioned the motives behind creating the club and not only what students were involved, but the faculty and staff that helped make it happen- like Martha Ucci (the director of the Office of Academic Achievement), Richard Grant (head of the Disability Committee and Dean of Academic Services), and Jim Hermelbracht (director of Student Activities). It also went into things I thought that could be fixed on campus, as well as programming the club plans to achieve.

The article also voiced the opinion of junior Tom McKinnon- a political science major on campus with cerebral palsy and it was said that "He believes that the club will be beneficial in educating people on the subject, but hopes that education will lead to disabilities becoming a transient issue." I definitely understand where he is coming from- that he believes disAbility should become a transient issue, but in order for people to be able to see disAbility in a different light there needs to be a movement. On campus there are groups that promote cultural awareness- like Diversity on Campus and Asian-American Society. I think we need groups like this in order to promote differences and work towards understanding them.

McKinnon also said "The issue [disAbility] and the club should be taken with a grain of salt. I hope that disabilities will become a non-issue." Once again, I understand where he is coming from, but I do not really understand why the issue and the disABILITY Enlightenment Project needs to be taken with a grain of salt. He explains that "the club's main focus should be to work towards total equality and not alienation." I feel like the disABILITY Enlightenment Project is not alienating people with disAbilities at all, just like the Diversity on Campus Club, the Asian-American Society, and other clubs of that nature do not alienate people of different racial, ethnic, or cultural backgrounds. Those groups are not "taken with a grain of salt," so why should the disABILITY Enlightenment Project be?

I want people to realize that what we are trying to do is not to set aside people with disAbilities, but rather educate people about them and embrace them. We want to promote equality, and I want people to feel comfortable discussing the subject of disAbility since it can sometimes be such a taboo issue.

I see absolutely nothing people need to be wary about in regards to the disABILITY Enlightenment Project. I think we are doing a great thing, but if McKinnon and others do have qualms with the club, I do want them to come forward and voice their opinion, because like I just mentioned I want to promote discussion about disAbility on campus.

Anyway, to wrap this up I am glad that we got so much publicity and I hope that more members of the Stonehill College Community will become involved.

Feel free to join this blog and make a post of your own!

Ally

disABILITY Enlightenment Project

The disABILITY Enlightenment Project at Stonehill College agreed that it would be a great idea to start a blog. This will hopefully be used as a forum to discuss disABILITY and act as another tool to educate the community! Hopefully we can get the kinks figured out quickly so we can dive into deeper issues.

Happy Blogging Everybody!