Disability Studies Journal @disabilitythoughts - Tumblr Blog

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leahnussbaum.wordpress.com

Will continue to write about disability and my first post is about Autistic Tracking Devices! Read it :D

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Here we go... first (small) post in a while! And a few more coming soon. Guess I was on vacation. Had a great time over break and I hope all who are reading had a great winter break and holiday as well! So here comes the time when I'm not in a disability studies class any more this semester, but I'll be taking Youth Schooling and Popular Culture, and I believe I'll have the opportunity to study more about the media and disability. I'm also looking forward to a job here in Syracuse with a fabulous young man who uses facilitated communication, (typing) and I'm looking forward to learning a lot with him and about FC!

The blogging world is really interesting. I'm finding so many cool blogs about disability-- people with disabilities telling their stories. Something that I was discussing with a good friend of mine is how people with disabilities and like-minded people can have a huge voice through social media. I thought of how in Atlanta, at the Interfaith Leadership Instiute this weekend, I met a really cool guy named David Geyes, who has a blog about growing up with a disability (www.growingupwithadisability.blogspot.com --its great!). We instantly connected over our mutual interest in disability studies and the fact that we both had disability blogs. When he found out I went to Syracuse, he asked me if I knew Steve Kuusisto. Dr. Kuusisto (I wrote about his book below!) is a great guy who I have had the pleasure of speaking to because he's the director of the Honors program at Syracuse. Turns out that he and David were cyber-friends over their blogs about disability! (Steve's is http://www.planet-of-the-blind.com/ amazing too!) Small world! It's so cool to meet other people with similar interests and passions. There is a whole community of like-minded people who share the same struggles with disability in this world. I think that the web can be a great way for people who care about disability to connect! I love being part of the blogging network!

Email me at [email protected] if you're interested in reading a super long research paper on disability perspectives in Syracuse, NY. Thank you to all who helped out!

Journal 12/7/11: Disability in the Arts!

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[A digital text-based image, has ten rows of capital letters, printed in Cyan, Blue, Yellow, Magenta and Black, the basic colours of printing ink. The letters make words which might be used as labels to describe the artist. Her long list starts with ‘SEX FEMALE’ includes ‘HAIR BROWN’, ‘LESBIAN’, ‘SWEET TOOTH’, ‘ASTIGMATIC’ and finishes with ‘ABNORMAL’. The letters are divided in groups of 3 so that the words are sliced up and their meanings have to be searched for]

When I first saw this image Abnormal 2 by Ju Gosling, I thought it was interesting because it looks like a cohesive, colorful, abstract image of jumbled letters. It looks like one big colorful picture. When I looked at the image closer, I saw that each of the letters made up scrambled up words, starting with physical features, going to personality traits, hobbies, disability, and the word “abnormal”, but It took me a really long time to figure out what the words were. I made the assumption that these words were Gosling describing herself. Perhaps Gosling may have chopped up her words to show that it’s hard and takes a long time to learn about a person and about their traits, or maybe that each trait is part of another. In terms of disability, she included “oblique astigmatism”. The astigmatism is a part of the artist’s identity, but it’s not always something that someone can see. You would have to look closely into a person to see astigmatism, as well as internal characteristics, as you would have to look closely to see the words in the art. Every word that describes what you can see in the artist is equal in value and lack of clarity to the words that describe qualities that are invisible, that you can’t necessarily see before knowing the artist. I think this is saying that the qualities within a person have equal importance to those on the outside. I was intrigued by the choice of the final word, “abnormal”. I think that the artist is showing that her disability isn’t what makes her abnormal because it is an equal part of her to many of her other characteristics. Perhaps everyone is abnormal- that because we have diverse characteristics that there is nothing that defines what normal is. Or perhaps Gosling is trying to portray that abnormal is a characteristic just like any other.

A second interpretation of the picture came to me when I realized from Gosling’s description that the colors and letters were an artistic representation of a DNA print. This put the picture at a different perspective for me. Each and every person has tiny strands of DNA. The fact that she began with physical traits is something that a lot of people think of when it comes to thinking about DNA- you get brown hair because your parents had brown hair, green eyes come down to genetics. Is the artist saying that personality traits, hobbies, and disability reflect DNA? I think it could be what the artist is portraying because the entire image is one print of DNA. I find this confusing because Its saying it is not the environment that makes a person who they are, but their individual DNA traits. I think that environment, however, also has an influence. If environment didn’t influence what disability today is, then disability wouldn’t even have a label, because disability would be entirely genetically constructed rather than entirely socially constructed. People and society create labels for what a disability or “abnormality” is. I think that the artist is saying that each person’s difference comes down to DNA strands, and our DNA is what makes each of us different and unique, but I think there is more to what creates what is normal or abnormal.

I remember disability in the arts when I went to Israel two summers ago, and again last February. I visited the Nalaga’at Deaf-Blind Theatre, which was “founded in order to integrate deaf-blind people into the community, promote their needs and aspirations, and provide them with the opportunity to express themselves and exercise one of the most basic rights- to contribute to society” (Nalaga’at). Some of the actors were totally deaf-blind and some still had slight vision or hearing. I think that the show did a great job of raising the awareness that people who are deaf-blind should be included and treated with dignity, respect, and tolerance in society. I saw two performances of “Not by Bread Alone” where Act one begins with each person making bread on a long table, and each person introduces themselves. I thought it was so cool how each person was able to communicate, oftentimes through each other. I thought it was particularly interesting how actors and interpreters finger typed on each other’s hands to form language through touch, and then another actor would verbalize to the audience what was being said. I think that the play was fully accessible. They had screens above the stage where everything was translated into Hebrew and English type, although I don’t remember if the play was spoken in Hebrew or English verbally. They also had several sign language interpreters on stage throughout the entire performance. I also thought it was interesting that they had drums in several of the scenes, which was something that I had heard about before in terms of communicating through music. My friend Jackie, who’s deaf, often likes going near drums or speakers to feel the vibrations and beats they make, and I loved how they used the drums as part of the play to add accessible beats and music to the play. Like the dancers in the clip that we watched, these actors were being themselves, and were connecting with the audience through art and practice. The accessibility of the event, from what I could see, followed many of the checklist points on the Brief Accessibility checklist. I did some research on the theatre itself to see the extent of its accessibility.

What I found was that the theatre is not surprisingly very accessible in more ways than I would have thought. They have many universal design features in the theater such as tactile guiding lines and warning signs and handrails to help visually impaired visitors and performers move around the theatre, Infa Red assistive listening systems, and personal IR receivers. The box office has induction loop systems. Sign language and touch sign language interpreters are assigned to each actor on stage, which is something that I didn’t realize before. The color contrast of the stage was accessible for people with low vision. There were guiding blocks from the drop off and parking areas to the main entrance to assist walkers who are blind. There is a tactile model of the building at the main entrance. I am confident that the theater would be welcoming and accommodating any person, no matter what ability or disability.

Play Review- Boys Next Door: my mixed feelings

On October 9, 2011 I went to see Boys Next Door. Boys Next Door is a play put on by Syracuse Stage portraying people with developmental disabilities in a group home in the 1980s. I saw both its good qualities and its flaws.

When the audience laughed at actors portraying people with disabilities, It made me a little uncomfortable. I think about how at the camp that I volunteered at for the past two summers, Camp Arrowhead, we, as one on one volunteers with our campers with disabilities, were comfortable laughing with our campers…it was a great lively and comfortable setting where we were loud, silly, and not afraid to do crazy things like encourage campers to pour paint/jello/water/sunscreen/hair gel on volunteer’s hair (yes, an “enjoyable” experience lol!)! We want campers to be themselves and the goal is for everyone, volunteers, staff, and campers, to have fun together, in inclusion. Some of the things that I laughed at in the play could have happened in real life with my campers, and I had to think about whether it was okay to laugh at the actors who were imitating what a camper could have done. I think it’s sometimes okay to laugh at the quirkiness, when it’s an inclusive environment where everyone laughs like at camp, but I’m not really sure that the play showed any kind of inclusion. Yet then I thought about how the media and society views people with disabilities as sad and depressed, but this isn’t a true statement. I think that it was good that the play was lighthearted because it helps portray how people with disabilities aren’t angry, sad, or depressed because of their disability, and how it’s not depressing to be around a person with a disability. I found myself laughing at the jokes made in the play and it was okay!

I also don’t think that the play gave the characters dignity. It never showed them being independent, and it never showed a person with a disability having accomplished something. Some people can't conceptualize that a person with a disability can be independent, and can be proud of their disability, and I don’t think that the play did a good job of portraying this. The exception to this is Lucian, and in his dramatic scene, Lucian directly speaks to the audience and tells them that he has a disability, but that he is a man who is not to be feared. Lucians part was the most powerful in the play. I think that they could have done better if ALL of the actors had gone up and self-identified as having a disability, rather than their staff labeling them from the beginning to the audience. This sends a message of exclusion, that we in the audience and the staff of the group home somehow know things that the people with disabilities themselves don’t about disability.

However, reflecting back on the play, and talking to others who had seen it, I tried to see it how some of my friends saw it. It seemed like in this case, target audience was people who know little about people with disabilities, are uncomfortable with it. If this was the case, then I think they may have given a positive message to disability and raise awareness about types of disabilities. I think that the target audience probably got something out of this just by seeing someone, or an actor, with a disability on stage. It allows them to see that they aren’t villains or scary, as sometimes the media and society portrays. It makes people who are less comfortable with people with disabilities more comfortable after seeing that they don’t cause harm, but are regular people who are misunderstood. Everyone in the audience had an emotional response and could connect with the actors and their feelings. For me this wasn't something new, but for others maybe they have never had experiences with people with disabilities. In one scene of the play, one of the neighbors of the group home came into the house and was scared to talk to the residents as if they were regular people, and this showed individual discrimination because she was avoiding the residents because of their disability. While this is allowing audience members to become aware of discrimination faced at an individual level, it did not at a societal or institutional level. I think this is one small step in the right direction, but it did not fully give the right messages I would have liked to see in a play about disabilities, which would have portrayed disability discrimination at an institutional and a societal level.

Happy International Day of Persons with Disabilities!

http://www.un.org/disabilities/default.asp?id=1540

A sign I made at Occupy Syracuse!... not really my voice because I don't identify as having a disability, but I think as an ally I want to get the right points across! :)

[Image description: handwritten sign, reads “People with disabilities aren’t sick. We need work too. Beyond Equal Access.]

11/4/11 Journal: Disability in the Media

In response to: Longmore, P. K. (2003). Why I burned my book and other essays on disability. Chapter 6: Screening Stereotypes. Philadelphia: Temple University Press.

In the book Of Mice and Men, I did notice many things about it before being introduced to Disability Studies. I noticed that Lenny has an intellectual disability, and that he’s often portrayed as so dumb that he’s harmful to those around him. He was always unintentionally hurting small animals. It makes readers feel pity for him, and feel sad that he can’t help being so aggressive and see that he is weak. Disability in movies, however, is something that I honestly didn’t really think much about before taking this course. I never thought about how people with disabilities are either being portrayed as superheroes or villains in the media, and I guess I fell into the general category of people left it unnoticed. I’ve really noticed now that there are so many more oftentimes negative messages within all the children’s movies that affect how many people view disability subconsciously. One example where I really see this is in Star Wars. Darth Vador has a physical disability, and is the villain character of the movie. He also tries to get revenge on people without disabilities, like his son Luke by cutting off his hand. This is just one scenario out of many I can now think of. For example, in Peter Pan, the evil Captain hook had a hook for a hand. Now when children see people with hooks or prosthetics on their hands, they may relate it to Captain Hook and then to the hook being something scary. Along with the numerous examples given in the text, I can see how I have overlooked disability messages in movies and in books like these, and I’ve connected this to the concept of microagression.

In my Education for Social and Cultural Transformation course, we were talking about how all white people have racial microagressions, meaning covert racism that affects the daily lives of all people of color. When I read that “we harbor unspoken anxieties about the possibility of disablement” (132), and about how we don’t even realize that we “overlook them so much of the time” (132), I thought about how this is ableist microagression, covert ableism that we don’t even realize we have as abled people. I think that this ableist microagression is more harmful than more direct or vocal ableism. For example, if we claim that we’re not ableist and then overlook our own ableist anxieties, it allows people to ignore that ableism exists. This ignorance causes more ableism in our society because we think we have we have solved the problems of ableism by making wheelchair ramps or not being directly discriminatory, but in fact the main issues at hand are the institutional and societal discrimination and microagression that exist, especially in the media and in movies. I realize that I am guilty of ableism when I read the book of Mice and Men in eighth grade, and like they said in the article, I agree that I was “urged to pity Lenny [but] let off the hook by being shown that disability or bias or both must forever ostracize severely disabled persons from society” (135). I did feel pity for Lenny, and I was shown that severely disabled people in society should be separated, which is something that now, and then, I am critical of. I realize that there is so much institutional discrimination of characters who have disabilities in the media and books and that social and individual ableism is upheld by these institutional norms that many people overlook. After learning to look at media critically I hope I will see more of the ableist suggestions and messages that occur throughout the films.

One thing that bothered me when I was reading the book Of Mice and Men is that “even when bigotry is presented as a fundamental problem confronting severely disabled persons […] the final solution, the choice of the disabled character himself, is suicide” (137). I think that this gives a bad institutional discriminatory message because it suggests that it is better to be dead than to be disabled. It is not even ones disability or so-we-think, inability to do something the right way, that causes a person with a disability so much trouble or depression; it’s the way that society treats them. It is society which needs to stop discriminating against people with disabilities. So I disagree with the message that one would prefer to be dead that to have a disability because it’s not true. This assumption goes back to the original statement that we “we harbor unspoken anxieties about the possibility of disablement” (132).

AUTISM SPEAKS.

One popular media representation of autism is in a Public Service Announcment for Autism Speaks. I find so many things wrong with this advertisement. In the advertisement, they show different people saying “my friend’s brother’s son has autism… my neighbor’s son has autism… my son has autism”. This media source degrades and marginalizes people with autism because it suggests that they don’t have a voice. They never have someone say “I have autism”, so it suggests that people with disabilities are ashamed or won’t say that they have a disability. It also puts negative stigma on autism because it acts as if autism is a disease or plague that is spreading and that it’s something that we need to treat or cure. Autism Speaks is raising money to cure something that doesn’t need to be cured. Autism has been around for years, and making people feel pity for people with autism and suggesting that it needs to be “cured” is part of the problem of the negative stereotypes and fear that people have of people with disabilities. The Autism Speaks portrayal of Autism is a factor in how people with Autism are treated- they’re treated as people who are suffering, slow, and don’t have a voice. They represent autism as a puzzle piece, of something that needs to be put together and isn’t understandable, something that needs a cure. I don’t think that the puzzle piece accurately represents autism. Autism is so misunderstood by people because the media portrays it as something that needs to be placed or fit into a puzzle, something that’s confusing, rather than a disability that is part of what makes people unique. Autism speaks does not have anyone with Autism on their board. I question: why are they claiming that Autism "speaks" when they don't give autistic people themselves a speaking voice? Throughout my time at Syracuse, joining several advocacy groups for people with disabilities, and entering disability studies, I have met nobody with autism themselves or allies who support this organization. I have met several self-advocates and allies who support other organizations such as the Autistic Self Advocacy Network because it emphasizes giving them a voice (and not people who think they are diseased or depressed). I believe in the statement 'Nothing About Us Without Us"-- we can't speak for minorities without giving them a voice too.

Really interesting to watch Finding Nemo from a disability studies perspective! More blog on this soon. :)

Journal 10/26/11 Disability Studies Itself, Short Bus

Reflection on:

Mooney, J. (2007). The short bus: A journey beyond normal. New York, NY: Henry Holt and Company.

Linton, S. (1998). Claiming disability: Knowledge and identity. New York, NY: New York University Press.- Chapters 5 and 6

It’s hard to see which category of academics Disability Studies falls into. I think that it’s its own separate category. It gives people information and a new way of seeing things. Unlike social sciences, education, and medical fields, it’s not trying to change people themselves but trying to help people understand how society and disability relate with one another and show less of a medical perspective but a social one. Something that I think about a lot is what role disability studies is going to have in my life. It’s going to be like a lens. It’s already affected how I look and see the world and how it relates to disability. It’s becoming something that I’m seriously considering taking a big role in my career and my future. I want to advocate for people with disabilities in a disability studies perspective. Yet this perspective I know isn’t black and white- I want to learn many of the perspectives on disability, all of which are going to be different depending on the individual and their experiences. As an ally I can see the perspective of those without disabilities and can understand their feelings on disability that they have before being exposed to disability studies, because this exposure is also something recent in my life that has changed in my view of the world. I want to help people learn the things that I have in this class because it’s important to the disability movement as a whole, and important for people to see the way disability is portrayed in different aspects of society. From day one, disability studies has affected how I see the world. An example of this is that right away when my Social Problems professor handed the syllabus to our class, I noticed that many of the “ism’s” were going to be covered. We would have a class focused on racism, feminism, classism, heterosexism, etc. Yet I noticed that what wouldn’t be covered is ableism and the disability movement. We had talked in our last Disability Studies class about how many people don’t know that disability studies even exists, and that many students in schools never learn about the disability movement. Being a freshman who was new to Syracuse, I wasn’t going to argue with my professor about how she should change her syllabus that was already planned out for the year. This has been something that bothered me throughout the semester so far, and last week I approached my professor and told her that I was disappointed that I didn’t see Ableism addressed as a social problem. I told her I felt it is something important that is being ignored. What she told me, is that I was right in calling her out, and was completely right about her class. She told me that she wants to figure out how to change it for next year and include disability studies in her course. I truly hope that pointing this out to her made a difference.

The Short Bus is an excellent book for anyone who wants to understand Disability Studies to read. I love how Moody challenged normality while still being human and recognizing his imperfections in the way he viewed disability. He was really set on the idea that people with ADD and ADHD like himself weren’t disabled at all, it was society that decided that they are abnormal and label them as being a disability. Yet, he seems to understand that there is a line that is drawn between people who are wrongly labeled by their disability and those who at first make him feel like they belong in a separate disability category. He was honest while describing his discomfort with some of the people he met. He felt guilty that it took him so long to recognize Katie as someone who was as fully human as any other person, but by knowing her more he learned that her ways of communication were just as important and honorable as his own. This is a level of discomfort that all people see in others and it’s something that we too have to recognize in order to become more comfortable with the fact that not all people are the same. It’s important to know people with all levels of ability to see the diversity of how we communicate with one another, and I believe there isn’t one right way to communicate. There can be many languages that we speak or express, including how Katie expresses herself in sign language and how another person may express themselves by giving everyone hugs. Being normal is a social construct that I believe should be larger and more open to include all people with disability. If all of us were normal, normal would not exist, and people wouldn’t judge based on how we communicate and how we live our lives.

Book Review: Planet of the Blind by Stephen Kuusisto

Planet of the Blind, by Stephen Kuusisto

Summary: Stephen Kuusisto was born legally blind. In his memoir he describes the difficulties he faced with his disability growing up, and what it was like for him to be nearly blind and living through fear, and only seeing slightly through his right eye. As he grows up he suffers through anxiety and eating disorders and felt hopeless because of constant bullying, difficulties in school, and not being able to play sports and see like the rest of his classmates. His disability seemed like such a tragedy that he couldn’t accept the truth that he was blind to himself or to anyone else, and nor could his parents. Yet he meets friends who give him advice and reassurance which help him come to terms with and accept that his Blindness is part of him, and he learns that he can find true joy in life even with his disability by allowing himself to reach his full potential even if this means using aides. From the help of his friends, he learns that it’s okay to accept the help of strangers, and use resources like a cane and eventually a seeing-eye dog to make his everyday tasks and life easier for him. He is blind, and once he accepts this, his disability no longer becomes a tragedy but something that can be part of his identity with which he can continue to live life joyfully and graciously.

What is the author trying to tell people about her or his experience with disability? Kuusisto is trying to show his change in perspective on disability. He once believed that being blind was like going through hell, but later in life realized that in reality disabilities don’t have to be tragic. He is trying to show how he learned that it’s important to accept his disability as something that is part of him. Now blindness is something that he welcomes and embraces into his life, and he continues to live successfully and proudly.

Main Model of Disability: Medical Model: Stephen’s parents acted like his disability didn’t exist, because it was always something tragic to them, and something to feel sorry for. Stephen avoided seeking medical, or any other type, of support for coping with his blindness when he was young. As he came of age, he turned the medical model around. In other words, he now embraced the help and support he got, including using a guide dog and a cane. He didn’t support the traditional medical model attitude which would claim that his disability can be cured. However, he still uses the “medicine” of his new dog to celebrate and embrace his disability.

Personal Thoughts: I loved being captured into the Planet of the Blind. Kuusisto gives those like myself, who are not blind, deep descriptions of what it is like for him to not be able to see, which I find really fascinating because it helps me see from his perspective—- and not only physically. These descriptions help us connect us to his unique sense of the world and understand the struggles he went through to accept his disability. I thought that the book did start out a bit dark, as Kuusisto portrayed his struggles and difficulties that he faced every day— bullying, having to read slowly, avoiding help, and navigating his bicycle, to name a few. As Kuusisto discovers that his disability is no longer something tragic, I found the book overall to seem more lighthearted and hopeful. I think this is a great book for people in Disability Studies to read because it shows a medical perspective which portrays disabilities not as something that needs to be fully cured or as a tragedy, but as a part of an identity that can be embraced by allowing oneself to seek help, acceptance, and understanding from people inside, and outside the Planet of the Blind.

Universal Design is the way to go!

10/13/11 Journal: Sexuality and Disability

Reflection on:

Contreras, A. (1999). Discussing sexuality with disabled girls. In M. Wates and R. Jade (Eds.) Bigger than the sky: Disabled women on parenting (pp. 25-26). London: the Women’s Press

Frieden, A. (1999). Bigger than the sky. In M. Wates and R. Jade (Eds.) Bigger than the sky: Disabled women on parenting (pp. 183-189). London: the Women’s Press.

Litwinowicz, J. (1999). In my mind’s eye: I, II, III, and IV. In M. Wates and R. Jade (Eds.) Bigger than the sky: Disabled women on parenting (pp. 29-33, 76-81, 110-114, 143-146). London: the Women’s Press.

O’Toole, C. J. (1999). A child of both countries. In M. Wates and R. Jade (Eds.) Bigger than the sky: Disabled women on parenting (pp. 176-182). London: the Women’s Press.

It’s beautiful how each of the parents in the stories took the challenge of raising children and defied what people expected them to do. I wish that all people could read these stories and that they could have the same impact that they did on me. Their stories are so heartwarming and show that it has always been possible for people with disabilities to live their dreams and raise a family just like people without disabilities. Reading the reactions of the doctors who told the parents that they could not have children made me angry because they were simply seeing the disability as something wrong, something that prevented them from being parents, and something that needed to be fixed. I believe that these parents were just as good, if not better, parents than many parents without disabilities. They care for their children with love, and although they may do some things differently this doesn’t stop them from being great and wonderful parents.

When I read Adina’s story about her and her son Justin, I thought of my next door neighbor Benjamin. When Ben was a toddler, I remember his father, Martin, being very sick. He had a genetic disability, and if I remember right, one of the organs in his heart was missing or not working, perhaps the aorta. I remember my mom telling me that when Martin was diagnosed with this disability when he was a baby, doctors said he would never live long enough to see his children. But Martin kept on living to see his first baby born in 1998, and from a few years before he died in 2001, he used a wheelchair and oxygen machines in order to breathe. It must have been so hard for Martin to leave his wife, Linda, and Benjamin, just three years old at the time. I know it was hard for Benjamin, who for years was afraid to visit any doctor because he knew his dad died in the hospital. Yet it’s wonderful and fortunate that Martin had the opportunity to share the happiness of seeing his son grow for the last three years of his life. I wish he could see Ben today, a wonderful 12 year old young man. This story shows me that although life is fragile, it is okay to live your dreams and live your life to the fullest, and have kids if that is part of your dream. No disability should stop someone from raising a family like any abled person would.

These articles also made me think about the first time my mom talked to me about people with disabilities having children. We were at my elementary school, and I was probably in about second grade, and we saw my mom’s friend Janet. My mom mentioned that she was in a wheelchair. At this time, I didn’t really think in depth about whether or not people in wheelchairs could have kids or not. Then my mom told me that Janet was married and had two kids, and that she was really involved the town meetings, and in making the schools and buildings in my town more accessible for people in wheelchairs. She told me that people in wheelchairs can have families just like we do. I am glad that my mom taught me this from an early age because I’ve never questioned whether people with disabilities could have a family like I do.

I really agreed with the idea that people with disabilities should be given everyday choices. I thought it was really great how the Corbett Joan O’Toole gave Meecha the choice to wear diapers or to take the chance of needing help in the bathroom, because these are the kinds of decisions that she’ll make every day as she gets older. I like how she had the opportunity to learn to live independently in the real world. When Corbett went into the class for parents of kids with disabilities, it was so interesting how the other parents were in shock that Corbett allowed Meecha to get up and do things on her own. Sometimes I think that parents feel that just because their child is disabled that they cannot do things on their own, yet all of the stories of the disabled mothers who raised children have proven this wrong. I also recognize that I’m not a parent myself, and I can imagine how hard and confusing it might be…and what I’m saying isn’t “just that easy”. Yet I hope that parents can come to realize that they shouldn’t raise their disabled child differently from their other children. They shouldn’t tell their other children about sexuality and not their child who has a disability because physically and emotionally people with disabilities have the same abilities to have families and children as people without disabilities. It isn’t fair for parents and doctors to assume what their child is capable of or not capable of.

One thing that stuck out to me is how Peter was talking to his mom about how one day he would buy a bungalow, and his mom said that she would have to be able to go into it. Yet the reason that Peter said he wanted a bungalow was that maybe one day he would have a wife who was in a wheelchair too. I think that people who are raised by someone with a disability have a much greater understanding of disability culture and acceptance. Having grown up with a mom who is disabled, Peter has learned that people with disabilities can raise children like himself and he sees people in wheelchairs as not something out of the ordinary. He isn’t ashamed of having a mother in a wheelchair, as the doctors had told his mom he would be when he got older. I thought it was interesting how Peter distinguished when he was little between people like himself and people in the village. He knew that he was different, but he didn’t have the feeling that he was better than anyone with a disability, nor did he feel embarrassed by his mother. I am somewhat jealous of Peter’s “colorblindness” when it comes to people with and without disabilities. I wish everyone could see the world like he does.

When the doctors in the hospital wouldn’t let Jo hold her child when she wanted to, and how they wouldn’t let her interact with Peter, I thought about the stories my mom tells me from when I was born. When my mom went into labor with me, the doctors weren’t ready. They just wouldn’t believe that I was going to be born, but my mom did. When I was born, there was something very tiny disconnected between me and my mom in the uterus, so I was born very small because I didn’t get all of the nutrition hat I needed to be bigger. So, when I was born, my mom lost maybe half of her blood. She almost didn’t survive, and she was really weak. The doctors didn’t take care of her like she needed and didn’t let my dad stay with my mom overnight. My mom talks about how awful the doctors were and how they didn’t let her have what she wanted and get what she needed to stay strong. Like Jo, my mom was dependent on the help of the doctors at first, and it was so frustrating when they didn’t respect her when she wanted to be with me. I think that doctors need to be more aware and educated about the needs of mothers who need attention or who have disabilities, and really pay attention to the support that the family needs. I don’t think that the doctors should have doubted that Jo could take care and support the child on her own, and it shouldn’t have gotten to the point where Jo needed to discharge herself from the hospital in order for her to leave like an able person would after going through all the necessary steps and procedures.

10/6/11 Journal: Not a Tragedy

In Response to: Zuckoff, M., (1999, Dec. 5). Choosing Naia: A family’s journey. Boston Globe.

My mom’s best friend, Erin, found out in 2000 that her newborn son had VCFS, Velo Cardio Facial Syndrome. On Joey’s 11th birthday, June 23rd, Erin posted on facebook: “When my little boy Joey was born in 2000, the Doctors came in with the news of VCFS with Tetralogy of Fallot…. I was given an overwhelming list of over 100 possible effects my Child might have as a result of this diagnosis. In the eleven years that have followed…. he had open heart surgery at two months of age, countless ear and upper respiratory infections, dental visits that required hospitalization… he did not start to speak until he was 7 years of age…. so many ER visits I jokingly say we are on the frequent flyer program! Today my Joey talks, he socializes, he is brilliant with Legos and all Roblox, he does not get sick like he used to, he laughs and is a beautiful boy on his way to becoming a beautiful young Man. My Son has taught me patience… he has taught me what it means to be brave. My Son is gorgeous… he is precious…. and he is going to be OK!!! God Bless!!!”.

I agree with everything she says about Joey- He is social, funny, and one of the happiest boys I’ve met. I’ve watched him grow up from when I was young and he was just a baby. I remember wondering when Joey was going to be able to talk. I loved playing with him and his little sister Jackie and admiring their irreplaceable bond. The two of them are probably the sweetest siblings I know. It is Joey and Jacqueline that give her hope, because they are her heroes. Erin wouldn’t change the fact that she gave birth to Joey for anything. Although the visits to the hospitals are a challenge, Erin always talks about how brave and smart and strong Joey is. I admire both of their strengths. I am a big supporter of freedom of choice in abortions. However, growing up with Joey, I think that personally whatever disability my child has, I will choose to have the baby. I want to be prepared to handle any disability, and I think that if a parent chooses to have a baby they should be ready to handle any disability their child has as well.

One thing that stuck out to me in the article was that medical doctors kept on saying how “sorry” they were that their child was going to have Down Syndrome. This is very much a medical perspective. I think that a disability shouldn’t be considered a tragedy or something to be sorry for.

I was also kind of shocked by the reactions of Tierney’s father. Ernie. He was more focused on not taking away the government’s money and the burden of the child, than supporting the life of his own child and grandchild. Like the article suggests, there must be something in his life that makes him not want a grandchild with a disability. Perhaps it is race— that he doesn’t want a biracial granddaughter or son in law, or perhaps it is his experiences with his brother that make him feel the way he does. Either way, I think his opinions are wrong.

Something that I noticed is that the parents were always hesitant and were afraid that they weren’t given all of the information out there to make their decision. It’s evident that they are very educated and it was necessary for them to get information that wasn’t one-sided in order to make an educated decision.

It’s also interesting how religion plays a role in the story. When the Catholic hospital wouldn’t give the parents the option of having an abortion I disagree with their policies. Every person should be able to have the option of abortion, and whether it’s the right thing to do depends on the parents. I don’t think that any religious movement should define the law or policy of a hospital that works with people of all religions and backgrounds. Even if the doctor did believe that the parents should abort the baby, they wouldn’t do it. I also can connect to the parents because they are very spiritual and going to church helped them make their decision to have the baby. I’m also a spiritual person, and going to temple helps guide me thorough my decisions, even though I don’t follow each and every Jewish law, and just as Tierney doesn’t agree with the Catholic pro-life stance.

10/4/11 Journal: Blackout Restaurant, Marthas Vineyard

In Response to:

Wells, H. G. (1985). The country of the blind. In J. H. Pickering (Ed.), Fiction 100: An anthology of short stories (4th ed.) (pp. 1099-1112). New York: Macmillan Publishing Company

Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Cambridge, MA: Harvard Education Press.

In Israel two years ago, my teen group took us to visit the restaurant in Tel Aviv, Blackout, a dinner in the dark experience where it was impossible to see anything and all of the waiters and waitresses were blind. The waitress we had was open to answering our questions. My friend Rebecca asked her how long she had been blind. She explained to us that when she was a teenager, she developed diabetes, and when she didn’t take her medication like she was supposed to so her vision began to decline and she became blind. I’m a really empathetic person, and I almost felt sorry for her, feeling that she must have blamed herself for her blindness. However, the next questions asked were if she regrets or blames herself for not taking her medication, and if she wishes she could see again. She replied and said that sometimes it’s G-ds way of giving her a gift, and that she would not go back to seeing again because she’s learned to accept her disability and make it into something really positive in her life. Her blindness is part of who she is. Nunez, in the story, was given the opportunity to lose his vision to be one of the people. It was almost like a reverse of the waitress. It would be really hard for our waitress to give up being blind, part of who she is, just as it is difficult for Nunez to choose to give up his vision, part of who he is and who I am. Furthermore, I think that the dinner in the dark experience was similar to the experience of Nunez who was entering the world of people with disabilities, yet I was brought to the same level of disability while Nunez was still seeing. I was able to see from the perspective of someone who was blind, and I was able to eat my dinner like I normally would every day.

I really liked the changes in perspectives throughout the story. Being blind changed from being a disability in our society to in the story being the norm. The blind people in the village thought that Nunez was dumb for describing his sense of sight, something that was incomprehensible to the members of the village: “His senses are still imperfect, said the third blind man. ‘He stumbles, and talks unmeaning words. Lead him by the hand’” when describing him. It seemed to me like the people of the village were being ableist since they treated Nassau like he was a child or dumb. I think that Nunes himself was also ablest because he felt he held power and authority because he had such a sense of sight, when in fact he was proven wrong by the people in the village. In our society we are ablest towards people with disabilities, and we consider blindness a disability. It’s interesting to think that if sight was a minority, that seeing itself would become a disability. This is why disability is socially constructed, and something relative to people’s interpretation.

The culture of Martha’s Vineyard is a good example of the disappearance of ableism. I sometimes wonder if there was less of a separation with our society and with deaf culture on the mainland, if there would be less issues of ableism. I believe that in an ideal society, it would not matter if someone did or did not have a disability. In Martha’s Vineyard there was a lack of ableism because the concept of disability didn’t even exist in the views of the people that lived there. People who were deaf lived their lives the same way that people who weren’t deaf did. However, in the majority of the country, things aren’t as positive for people with disabilities or people who are deaf. This brings up the question in my mind of whether or not it’s possible to get rid of ableism. On one hand, I think that ableism is held up by institutional discrimination, that people with disabilities institutionally don’t have the same privileges in schools, laws, etc. This institutional ableism causes and upholds cultural and individual ableism, causing inequality and discrimination for people with disabilities. On the other hand, in places like Martha’s Vineyard there seems to be a lack of institutional ableism altogether, which breaks down ableism from the bottom-up. This is why Martha’s Vineyard is a great example of an ideal society where ableism isn’t a part of the culture of a society. The article about ableism discusses many specific ways we can break down ableism, including encouraging disabled students to express themselves in the most effective and efficient ways for them, specializing education without having them receive a different education, and employing universal design in schooling. I think these are definitely great ways to stop ableism from occurring in schools and education, but there are so many other issues that need to be addressed in terms of creating a society like Martha’s Vineyard. One of these is making it so there is no more separation of people with and without disabilities. When we separate people who do and don’t have disabilities into different cultural groups, classes, or schools, there are positive and negative aspects to this. A positive aspect is that it gives people with disabilities a sense of unity and community. However, it also allows ableism to thrive. Like I said before when discussing the Country of the Blind, I think that disability is a social construction, meaning something that doesn’t conform to societal expectations, and in reality it’s a relative concept rather than absolute. When ablest people consider a disability as something that is nonconforming to what they believe is the right way to behave or live, then they discriminate against and separate from the minority disability group.

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