Far Away Across the Field, the Tolling of the Iron Bell

“Very hard to explain why you’re mad. Even if you’re not mad.” -Pink Floyd, Dark Side of the Moon 
I had been packing my things, ready to move into a new house, and I came across a diary from 2014, my first year of graduate school, and the year I had a psychiatric breakdown and was committed to Upstate, which I have written about here in past blogs. This is from that diary. My cousin Matthew Doran died in 2012, at age 31, and the entry is about him.

The week before cousin Seamus’ wedding to his fiancee Mara, I woke up on Thursday morning; I had to go to campus. I felt like listening to Breathe on Dark Side of the Moon, by Pink Floyd. I haven’t heard it in so long. So I put my record on, and cranked the volume. Later on, I went with Diane to Sangha. Our meditation leader put on a DVD of Thich Nat Hanh, who spoke (Diane always interprets the videos in sign language) about the importance of breathing. Breathe. Diane kept signing. Breathe.

The next day, I called the hotel in Canfield, Ohio, where we were staying for Seamus’ wedding, to make reservations. I was put on hold and while waiting, I was texting with Seamus’ mother, Margi, and was on Facebook messenger with his brother Ryan, in Ireland. Seamus and Ryan are Matthew’s brothers, and Margi his mother. The muzak version of Breathe started playing over the phone. “That’s odd,” I typed to Ryan, since I had just listened to it. I remembered then, that the last time I had really played that record, blasted it over the speakers and really enjoyed it, was when I was 18, the day I moved into my first apartment in Utica, with Matthew. My father was there, too, helping me move in. I put on Breathe after we had hooked up the record player. “This is a great album,” Dad said.

Breathe, breathe in the air, don’t be afraid to care
Leave, but don’t leave me
Look around and choose your own ground
For long you’ll live, and high you’ll fly
And smiles you’ll give
and tears you’ll cry
and all you touch and all you see
is all your life will ever be

When I got home from Sangha that night, I played Dark Side of the Moon again, and I cried. I cried and cried. I felt the pain, the pain of Matt dying. I allowed myself to feel it. I never let myself do that; I am too afraid. I am too afraid to feel.

The next day, I was messaging on my phone outside on the porch with cousin Anne about financial troubles. I heard, coming from the house next door, Money, from Dark Side of the Moon, being played. I had to laugh. I haven’t heard these songs in ages. Seemed like Matt’s sense of humor coming through. I texted Margi and told her. The wedding of Matt’s brother Seamus was coming so soon. We were all sad that Matt would not be there.

I had been thinking so much about capitalism around this time. The system, and how as a mentally ill and disabled person I cannot do it, I cannot fit in. Matt was on disability, and money was always tight. Capitalism does not favor the disabled, it teaches that we have value only if we are productive within the system of money. Capitalism and disability have long been at odds. Money is really a joke, and Irish humor always finds a way to laugh at the grim aspects of life.

Margi told me that Matt had been communicating with her through music around this time as well. “His ringtone was Stairway to Heaven,” she said. Margi had been hearing the song play at points throughout the weeks leading up to Seamus’ wedding.

I never said I was afraid to die. I’m not afraid to die. Anytime is fine with me. We all gotta go sometime.

The wedding was wonderful, it came and went, and was a memorable time. Then last night was Sangha again. I met Diane, as I do every Thursday, at 6pm at Hoople, her office. As we left to walk to the parking garage, she pointed out the full moon in the dark night sky. The upstate night sky, the dark black clouds outlined in gray alternately obscuring and revealing the white moon. The sky was so black. Bells began ringing from the nearby Setnor School of Music. I thought of A Christmas Carol, the bells that ring at night to signal to Scrooge that another ghost is coming. Life. Death. Past, present and future. “I think those bells are playing a Chanukah song,” Diane said. I looked up at the moon. “Ah, that is why I have been feeling this way,” I said, because I have been having very vivid dreams. The full moon always affects me. It had been almost a year since I last spoke to Matt.

If your head explodes with dark forebodings too, I’ll see you on the dark side of the moon. 

Diane and I walked to the parking garage. Earlier in the day, my room mate Jennifer mentioned that the crows had returned to Syracuse. Diane and I were on the fourth floor of the garage, and she was putting things in the back of the car. The sky had turned purple. I could see it through the long, open area where there is a window in the concrete. Suddenly, a murder of crows flew by. There were so many of them. “The crows!”I exclaimed, and ran to the edge of the window to watch them fill the sky. I could see that Diane smiled. I wondered to myself where the crows went and thought about how I must try to find them, to perhaps befriend them. Of course, they are my ancestral bird. Corbett comes from the Latin, corvo, for crow or raven. There is a raven on our family crest and the motto is God feeds the ravens. Black hair runs in the Corbett family. Raven-haired. Diane and I got in the car, and as we drove to Sangha, I saw that some of the crows had settled in a small grassy area, in trees, between two buildings. The buildings of the nearby psychiatric center.

We got to Sangha and Goethe’s poem To the Moon came to me. I asked our meditation leader if I could read it aloud. We started Sangha with the poem: Bush and vale thou fill’st again/With thy misty ray, And my spirit’s heavy chain/Castest far away. Thou dost o’er my fields extend/Thy sweet soothing eye, Watching like a gentle friend, O’er my destiny. Vanish’d days of bliss and woe/ Haunt me with their tone, Joy and grief in turns I know, As I stray alone.

Then the talk by Thich Nat Han. It was about learning to feel your suffering. To embrace it and care for it. Not to run away from it. Not to distract yourself from feeling it. Feel your suffering, do not be afraid of it. You can lessen the suffering of others, but you can only heal it in yourself.

During Dharma sharing, I spoke of how I had fallen into the pain and suffering I have felt over the loss of Matthew, and how I have been trying to feel it more. And as I have, my dreams are changing. I am no longer a victim, as Thich said. I am no longer running. I am fighting back and taking control. I was often trapped in my dreams, and now I am breaking free and escaping. I have been so wary of the full moon because it brings everything to light. And it is hard. The moon illuminates all things. Now I am embracing the full moon. I am welcoming it.

For nothing hidden will not become manifest, and nothing covered will remain without being uncovered. All things are plain in the sight of heaven.- Jesus, from the Gospel of Thomas

That was the end of the diary entry.

Dark Side of the Moon is about life and death and madness, particularly the madness of former band member Syd Barrett, who was diagnosed with schizophrenia, as was my cousin Matt. Matthew taught me so much about mental health, as I too, have mental illness. I told him once, “I have been wanting to tell you for many years that I hallucinate, too. I know what it’s like.” I had been too shy to bring it up before. Matt was never one to mince words. “Yeah,” he replied genuinely. “It’s hard.” That was the last time I saw him before he died. It was Christmas Eve, 2011. Matt died the following Spring.

Consider the work of God, For who is able to straighten what He has bent? What has been is remote and exceedingly mysterious. Who can discover it? -Ecclesiastes 7:13

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Yes, Sign Language is a “Real Language”; On American Sign Language (ASL) and Academic Language Credits

Author’s note: In Deaf culture, the capital letter D is used to indicate cultural deafness. The little d indicates deafness on its own, as more of a medical term. Sometimes, d/Deaf is written. I find it awkward to write d/Deaf every single time. I tend to use the capital D when I feel it is appropriate. 

September 29th was Erev Yom Kippur. Yom Kippur is the holiest day of the Jewish calendar, and follows Rosh Hashanah, the Jewish New Year. It is a time of celebration, reflection, atonement and fasting.

I have been able to get more and more in touch with my Jewish roots because of increased access in my life now that I am at the University. It is amazing that it has taken this long, but I am able to request sign language interpreters for Jewish services on campus, and for any other related events. It is not perfect, and it is an ongoing process for people to learn how to set up Deaf access, but it is more access than I have ever had in the past. This is partly because I never knew it was my right to even ask for it. This Yom Kippur, I reflected on the barriers to language I have experienced in my life, and how much this has affected me, and others like me.

Having access to language can really open your life to possibilities. For many years, I did not have real access to language at all. Growing up, like many Deaf people, I was raised to be purely oral. This means that I was given hearing aids, not taught sign language, not involved in Deaf culture, mainstreamed into a hearing school, and had to take years of speech pathology in order to be able to passably speak out loud. It’s a common experience among Deaf and hard of hearing people, and it is sometimes referred to as oralism. So yes, I was taught a language, which was English. However, English as a spoken language does not work as well for me as Sign Language does. I always had to strain to speak and hear, and it never felt easy or natural. This caused anxiety, depression, exhaustion, stress, shame, and isolation. It is fine to teach deaf children how to speak and read lips. There is nothing wrong with that. I am grateful for the wonderful speech pathologist I had growing up. However, the problem lays in keeping sign language completely out of this education, and not giving someone the option to just be Deaf and to develop their identity as a Deaf person.

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Image of a toddler holding a doll, learning to sign with an adult teaching them.

Deafness is considered to be a shameful defect that we are taught to hide. Many Deaf people who are raised to only be oral grow up feeling shame and embarrassment at how our voices are different, how we stumble over certain words and letters, how we cannot hear the TV or radio, and many other things. The reason we feel this shame is because hearing and speech are emphasized as superior, and we are never going to be perfect at hearing or talking aloud. This makes people feel defective. Also, we are not given access to understand what is happening when sound is involved, so we are often isolated and embarrassed for that reason.

It is a travesty that so many Deaf people grow up not knowing that Deaf culture is a beautiful thing, or that it even exists. It pains me that many Deaf and disabled people in the world are not aware that they have a culture because able-bodied people have kept it from them. Able-bodied and hearing people are the ones who are largely writing policy and deciding the fate of everyone else, so things either don’t change or are very slow to change.

The problem is, since hearing people do not know anything about Deaf Culture, they assume. One of the biggest assumptions hearing people make about Deaf Culture is that sign language is not a “real language”, but just word-for-word translation of spoken language. Of course hearing people would know, right? Because hearing people are the largest users of sign language in the world. WRONG. The vast majority of hearing people do not use sign language, do not know any Deaf people, and have never spent time in a d/Deaf space. 90% of deaf children are born to hearing parents. My parents had pretty much zero experience with Deaf culture. The only hearing loss a lot of hearing people are familiar with is the hearing loss their grandparents developed later in life. I am here to tell you that this is not the same thing as growing up Deaf.

It is exceedingly rare for me to meet a hearing person that is familiar with basic concepts of Deafness, unless that hearing person is involved in the Disability Rights community or has studied disability studies in school. So why do hearing people continue to create policy around d/Deafness?

Many hearing people are astounded that I can talk. This happens about once a week, no exaggeration. I encounter a new person who has never met a Deaf person before, and they do not expect me to be able to speak. I find this ironic, since it is the hearing world that has consistently denied my access to cultural Deaf language, and has forced upon me a language that is not optimal for my needs. When a hearing person discovers that I can speak, what usually follows is: “How can you be Deaf if you can talk?” News flash: Deaf people can talk. Some of us choose not to, some of us struggle with it, some of us speak more than others. There are many ways to be d/Deaf.

Because hearing people assume so much about deafness, they have decided that sign language is not a “real language”, and that it should not count in college as a language credit. This causes all kinds of problems for Deaf people.

I have written about my experience growing up and coming to accept and understand my Deaf identity here . What I have not spent much time writing about is my experience as a Deaf person in college. It has been too painful to revisit. But I need to, because the problems I have are just continuing for younger generations, and it is totally unnecessary and a huge barrier to the success of the Deaf community.

When I transferred to CUNY Hunter College in New York for undergrad in 2005, the counselor for the Deaf and Hard of Hearing students (who was hearing and did not sign) told me that I was “not allowed” to take a language, and that my ASL language classes taken in high school and community college would not count towards a language credit. Why? Sign was not considered a “foreign” language, and it did not have a culture.  I was devastated. Also, since hearing people think that Deaf people cannot talk, or that it is too much trouble for them, this meant that I was not allowed to take a foreign language at the school, either. Instead, I would have to make up these language credits with something called “cultural classes”. Four of them.

So, after being told I had no culture and being denied the ability to study a language, or to use my own second language for the credit, I instead was required to take classes on “culture”. Some hearing person had decided what “culture” entailed, and disability and Deafness were not a part of it.

Now, I love learning and I love school, but I was not thrilled that I had to take four extra classes and spend a longer time in undergrad due to this issue. I was 24 years old at this time, and I did not know my rights. It made me very sad that I was not allowed to study a language, not even Latin, which is barely spoken aloud anyway. This is an example of why stereotypes that Deaf and disabled people are stupid or not capable of achieving exist. We are segregated from a lot of things and not even allowed to take the same classes, but instead made to do some other bullshit, and it takes us longer to graduate for that reason.

Some hearing people might think, well, that’s how it goes, there is no way to teach a foreign language to a Deaf person. WRONG. This is where understanding Deaf access comes in. I should be able to learn any language I want to learn. All I need is access. If I want to learn Russian, for example, I would take a class and have a sign language interpreter who knew Russian and English work with one who knew English and ASL. I would actually be learning a lot more than just spoken Russian that way, I would be picking up Russian sign, too (but, you know; Deaf people cannot talk and are bad at learning languages *eye roll*). A reputable sign language agency could instruct someone on how to set this access up, and in a city like New York, where my undergrad was, you can bet that there are Russian sign language interpreters. Also, I have said this before: IT IS THE LAW TO DO THIS. DEAF ACCESS IS A FEDERAL LAW. 

So, is sign language a “real language”? How about a little primer:

Sign language is not universal. Many hearing people assume that it is. Sign language is different in every country, and it is different in each English-speaking country too. British Sign is different from American sign, and so on. Blowing your mind? That is because you probably think that sign language is word-for-word translation of spoken language, and is based on spoken language. It’s not.

In the U.S., there are different types of sign language. Some Deaf people use ASL (short for American Sign Language) in a style that is considered more culturally Deaf. People who grew up using sign language and/or have other Deaf people in their family use ASL more, but the style (dialect) can differ from person to person. Sign in the U.S. differs by race, class, and region. There is “English” style sign, which is what I primarily use, which is more about words and is structured differently that ASL.

However, many American signs are based in French sign language. This is an example of how ASL is a different language with its own origin and history. Like every language in the world, there is a history and a culture around sign, and there are different styles and dialects of it, too.

Sign language is conceptual. Sign language is about concepts, and concepts can be described visually. This is why sign language lends it self well to theory. Karl Marx, for example, can translate easily into ASL. I think that many areas of study could be enhanced by ASL, and that ASL can support communication and understanding in a variety of fields. Limiting language to just speaking words does not allow for the best experience in understanding or producing knowledge. I feel that spoken languages based only on words can be extremely limiting. However, spoken language continues to be preferred and exalted over sign. The reason? Social constructs around Deafness and disability as defects that need to be “fixed”, and have nothing to offer, and ideas that sign language is somehow lesser than other languages. 

So, not only do hearing administrations at certain colleges deny Deaf students access to learn a foreign language, therefore hindering their advancement in academia and their development as humans in the world, but then they’ll refuse to take American Sign Language credits. This makes no sense at all. Can you understand how this just hinders Deaf people from achievement? It also prevents hearing people from learning sign, since sign language classes are not going to fulfill their language requirements. If more hearing people learned sign language, then there would be much more inclusion and access in this world. Some colleges accept ASL credits; many still do not. Things are changing, but more colleges need to get on board.

It is old fashioned and quite honestly repulsive, audist and ableist to treat sign language this way. Deaf people are not the only ones to benefit from sign, either. Many disabled people use it or could benefit from using it, including babies and children. You don’t have to have disability or be Deaf to benefit from sign.

There is a rich, vast, storied history of Deaf culture in this, and other countries. There is a culture of Deaf people that is very different from hearing culture. There are a lot of books, documentaries, journal articles, and more that surround Deaf Studies. There is a lot to learn about it.

Sign Language is a language. Sign Language has a culture. Sign Language has many dialects. Sign language is different all over the world. It is time for this to be understood and accepted. It is time for universities to treat sign language as a REAL LANGUAGE and to make it count as a language credit. It is time for hearing people to understand how sign language works before they make policies and rules around it. It is time to step out of the past and stop with the isolation of Deaf and disabled people. It is time for full inclusion. Nothing About Us Without Us. Do not make policies around a marginalized group when you are not a part of it. Do not shut people out of accessing life, the world, careers and education. Include sign language and include Deaf culture in college curriculum.

For more information, check out this video. It does not have audio description, and for that I apologize. I will work on finding one that does. 

 

 

 

 

 

 

 

Disability Day of Mourning 2017

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Image of a single candle burning with a dark background. 

Followers of this blog are aware that often I cover very serious issues in Disability Rights, such as homicide, abuse and neglect of disabled children. It is not easy for me to write about and research these articles, especially because as a Deaf and disabled person, I can identify with the children. The reason I write about these subjects is because many` do not realize that disabled people in general, not just children, are murdered and abused at higher rates than able-bodied people. I have focused in this blog on homeschooled disabled children who were tortured for years leading up to the homicide. This is a very specific type of case. There are other cases involving disability homicide that we also see a lot: the murder of a disabled child or adult by parents or guardians who have been entrusted with caring for that person’s physical needs.

If you follow disability homicide related news as I do, you know that there are so many cases of disabled people being murdered each year by parents and caretakers that it is hard to keep up. And sadly, what often happens in these cases is that the parents of the disabled victim are considered to have been unduly burdened by the disabled person in their care. There is sympathy from the media, criminal justice and legal systems towards these murderers. In many cases where a parent murders a disabled person in their care, the disability is autism. Many autistic children and adults are murdered each year by those who have been trusted to assist them in their daily lives. And so often the response is the same: that poor parent. They were so unfairly burdened by the disabled person. Let’s give them a lighter sentence, or no sentence, and lots of sympathy. Never mind what the victim went through. Even if there is a harsh sentence doled out in the court, the media and public reaction is often still sympathy for the murderer.

In more typical cases of homicide where the victim was able-bodied, the experience of the victim is highlighted. Language surrounding these cases is not sympathetic to the murderer, especially after they have been convicted and sentenced. It would be considered offensive and insensitive to the victim and those who are grieving that person to do so. So why is it different in cases where a parent murders a disabled person? Because disability is not understood in the criminal justice system, the media, and many other areas of society. Autism, for example, is considered by many to be sad condition; a burden, a defect. Autistic children are “puzzle pieces” to figure out. People think that maybe the autism was caused by a chemical or an environmental “toxin”. It is a shame that their parents never got themselves a neurotypical child, is a common thought. All of this is untrue. There is nothing wrong with autism; autistic people do very well with the right understanding and education. The case of George Hodgins, a 22 year old autistic man who was killed by his mother in 2012, is an example of how media sympathized with the murderer.

The same type of notions are believed about other disabilities, too: it is a shame, a burden, a defect, and so on. Disability is not a defect, it is one of the many ways that humans are diverse. Disability is not something that can or should be eradicated; it is a natural part of human biodiversity. And diversity is extremely important. It is beneficial for society to have many ideas that come from different places. A person’s experience may be outside the mainstream, and they may notice and understand things that others don’t. Diversity brings many ideas to the table. Also, all humans have inherent worth. Humans are deserving of dignity and respect, and it is better for everyone when human rights are upheld.

When a parent murders a disabled person in their care, there is something going on with them that is not the fault of the disabled person. While it is true that caretakers can feel overburdened, it is never acceptable to murder or abuse the disabled person in their care. There are many reasons that people kill and hurt each other, but the fact remains: homicide, abuse and neglect are illegal. It is not “less illegal” when the victim had a disability. It is not any less of a crime. The victim still suffers.

It is important to keep the memory of these victims alive, and to continue working for justice in Disability Rights. Tomorrow there will be vigils all over the U.S., and a virtual vigil will be held on Facebook at this page, happening tomorrow, March 1st, from 3pm-7pm:

https://www.facebook.com/events/544387322435021/

Syracuse University is having a vigil on campus outside Hendrick’s Chapel on the Quad tomorrow, March 1st at 1:30pm. The event is accessible with ASL interpretation and braille documents.

This year, I will be thinking of Erica Parsons, who was finally laid to rest last weekend. She would have been 19 years old. I will also be thinking of Hana Alemu Williams.

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Erica Parsons. [image of a photograph of a little girl, around age 7, with short brown hair, bangs, and brown eyes.]

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Hana Alemu (Williams) [Image of a photograph of a little girl of about ten years of age, smiling, with a pink floral top on. Her dark hair is pulled back from her face].

 

 

 

Disability, Homeschool, Intercountry Adoption and Homicide: The Case of Hana and Immanuel Williams

In October 2016’s blog post I wrote about homicide victim Erica Parsons, and how adopted, disabled, and homeschooled children can be abused and denied a proper education when parents exploit loopholes in the law for their own gain. These parents do not provide disability accommodations to the child in need, even when they have received government funds to do so.

We also saw with that case how a lack of disability accommodations in a homeschool can be a tool of abuse and homicide, and also how abusive parents take out frustrations on and exploit disabled, adopted children. Erica’s story is not the only one like it. Sadly, there are many cases involving the murder of children like Erica.

Adopting disabled children from countries outside of the U.S. and bringing them to American homes gained popularity in the last decade, reaching heights in 2005-2007. Many children from the global South have been adopted into christian homeschools, as intercountry adoption was particularly emphasized within that group. Intercountry adoptions to the U.S. resulted in so many cases of abuse and homicide that certain countries have imposed moratoriums children being adopted to the U.S.

Disabled children are positioned by the adoption movement as being particularly in need of being adopted. And in many cases, they likely are. However, what happens when these children come to the U.S. and are expected to blend into a large, homeschooling, Christian Fundamentalist family? And is intercountry adoption the best way to address global disability?

The intersection of adoption, disability, homeschool and religion has resulted in many cases of abuse, neglect and homicide of children.

Christian Fundamentalist Patriarchy

Christian Patriarchy is a name given to an ideology found in evangelical and fundamentalist Christianity. The main tenets are large families, traditional gender roles, modest dress and debt-free living. I have written about it before, here. I firmly believe in religious freedom and it is not my intent to disparage this movement, nor do I think all such families are abusive. This post is about those who do not follow the law.

duggar-familyTelevision’s popular show 19 Kids and Counting, featuring the Duggar family. Jim Bob and Michelle Duggar are the proud parents of 19 children, and identify as Independent Fundamentalist Baptists. They adhere to many of the tenets of Christian Patriarchy. The Duggar family is pictured in front of their house in Arkansas, United States. [image of a large family posing in front of their very long, pre-fab style ranch home which has 5 large gables on the green tin roof. To the far left are the parents, each holding children. The children who are standing are arranged from youngest to oldest. They are dressed conservatively and the girls have long hair. All of the boys have very short hair, polo shirts and khakis or jeans on. The girls have polo shirts over long skirts or denim jumpers.]

Part of the Christian Patriarchy movement in the United States has been a call from community leaders and ministers to adopt children from the global South; developing-world countries which are often perceived by the West as troubled. Above Rubies, a magazine and now website with a Facebook and Twitter presence, has long been a popular and respected publication among primarily women readers seeking to observe principles of Biblical Womanhood. Above Rubies was one of the first to sound the alarm regarding the perceived need for Christian families to adopt African orphans, using the daughter of editor Nancy Campbell as an example. Nancy’s daughter and her husband adopted six children from Liberia. Nancy Campbell was instrumental in pushing the adoption movement, telling readers that it was akin to welcoming “Jesus himself” into their homes, and a form of ministry.

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Countries in Africa were presented by ministers, Christian leaders like Nancy, and Christian adoption agencies as having millions of orphaned children in need of homes immediately. As a result of this and other factors, Ethiopia became one of the world’s top ‘sending’ countries of children to the West, second only to China for numbers of children adopted out. There are complex factors surrounding adoption from Ethiopia and other African countries, one of which is the trafficking of children to orphanages where they are declared “abandoned”, in order for human traffickers to make money when people from the West adopt them. Journalist Kathryn Joyce has written about this issue extensively in articles and her book, The Child Catchers. According to the National Institutes of Health, orphaned children in Sub-Saharan Africa numbered in the millions in 2007. There is a definite need to address this population, but it must be done correctly.

In a community which already stressed the importance of a large family, adherents to the Christian Patriarchy ideology were now being encouraged to adopt more children. Adopting older, disabled children was exalted as being particularly Godly, due to the perception that such children are unwanted and more in need of homes, and also, harder to raise. Christian Adoption websites often feature older, disabled kids in a special area titled “Waiting Children”.

In the United States, there is no central authority which oversees adoptions. However, state and federal funding can be received by families who have adopted disabled children.

Hana and Immanuel Williams

Hana and Immanuel Williams were adopted from Ethiopia in 2008 by Larry and Carri Williams of Sedro-Woolley,Washington state; a rural area close to the Canadian border. The Williams were a homeschool, Christian Fundamentalist family with seven biological children. A friend of Carri’s testified in court that Carri was inspired to adopt children from Africa by an Above Rubies women’s retreat the two went on. Carri wanted more children, but could no longer conceive naturally.

Initially, the Williams planned only to adopt Immanuel, a deaf little boy who was matched to them by an adoption agency called Adoption Advocates International (AAI). Carri had studied American Sign Language prior to getting married at age 19, and the agency thought it was a good match. After viewing a 60-second video of ten year old Hana, who resided at the same orphanage- Kidane Mehret Children’s Home in Addis Ababa, which is affiliated with AAI, the Williams decided to adopt her, too. Hana had family in Ethiopia, but they were too poor to care for her. Her father had died, her mother disappeared, so she had for a time lived with extended family until they gave her up for adoption due to poverty. At some point during her time in Ethiopia, Hana developed Post Traumatic Stress Disorder. It is not unusual for orphaned or abandoned children to develop PTSD and other psychological and emotional disabilities. Also, once children are orphaned, which is traumatic enough, a following traumatic event can often occur since they are no longer protected by their parents.

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Hana Alemu with her extended family in Ethiopia. [image of a family gathered around a table with a pink and white striped cloth on it, with a large baked bread and candles. To the far left is a grandmotherly woman dressed in white, wearing a white head scarf. Next to her is Hana, indicated by a box over her image. She is about 5 and looks wide-eyed and shy. She has a light blue sweater on and a bun. She is surrounded to her left by family members, on is a young boy, the others look teenaged, and there is an older person at the end of the table.]
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From left: Hana Alemu (renamed Hana Grace Rose), and Larry and Carri Williams. [image is made of up three individual photographs. The first is of Hana when she is living in America, she is smiling, her hair is braided, and she is wearing a black T-Shirt with some hot pink lettering on it. Next to her is an image of brown-haired Larry, looking long-faced and pensive in the courtroom, wearing a red plaid button up shirt and a brown courdorouy blazer. Next to him is an image also from the courtroom, of a blond haired woman also looking pensive, this is Carri.]

 

Larry and Carri never went to Ethiopia, but had Hana and Immanuel flown to Washington state with an escort, a practice that the Ethiopian government has since outlawed as part of its ongoing attempts to curtail abuse of adopted children. One of the problems with this is that parents and children do not spend any time getting to know each other prior to adoption, and American parents do not visit the culture the children are from, which could be key to understanding and connecting with them. However, the idea here is not to understand another culture with these types of adoptions. It is to “minister in your own home”, as Above Rubies put it, and to save and rescue children from what is perceived as a negative place.

Once part of the Williams household, isolated in a gated community, Hana and Immanuel were both subject to abuse. Like Erica Parsons, they were singled out from the other children and harshly punished. Hana had a hepatitis B along with the Post Traumatic Stress Disorder, and was older than Carri thought she would be, starting her period soon after arriving in Washington, which disgusted Carri. Carri abused Hana severally, locking her in a four-by-two-foot closet, making her sleep in the barn and use a port-a-potty outside, and shower in the front yard with a garden hose. Reasons behind some of this abuse was due to Hana having hepatitis, which Carri thought would contaminate the rest of the family, so she therefore decided to quarantine and humiliate her.

Hana did not play with her adopted siblings, and was mostly kept in the closet, away from the rest of the family. Her hair was shaved as a punishment, and she and Emmanuel did not share meals with everyone else, and were made to eat outside, even in harsh weather. Hana was also excluded from being homeschooled, according to law enforcement.

Immanuel was also abused, being hit by Larry Williams hard enough to draw blood. He was punished if he did not hear people, kept away from a Deaf church member who attempted to communicate with him, and often made to stay outside the house and in the yard, like Hana. The other children were forbidden by their parents to sign with him when he was being punished, and both Hana and Immanuel were punished frequently. It is a common misconception that sign language is easy to learn and that it is universal. Immanuel would not immediately pick up American Sign Language, but would have to learn it. It is unclear what type of language he used in Ethiopia. Even if Carri knew ASL before she was married, it is no guarantee that she understood d/Deaf culture, or was still fluent in ASL after not using it for a long time. Simply having some experience with ASL does not necessarily mean someone is a good match for a d/Deaf child. There are many things that factor into being a good match for raising a d/Deaf child, particularly one from a country which speaks a different language.

Larry and Carri Williams prescribed to the now infamous book that I have written about in previous posts, To Train Up a Child by Michael Pearl of No Greater Joy Ministries. Law enforcement found a copy of the book in the Williams’ household, and evidence that the children were switched with the type of plastic plumbing tube recommended by Michael Pearl. To Train Up a Child is a book well known in Christian Fundamentalist circles, and advocates corporal punishment of children and infants based on seventeenth-century Puritan childrearing. This was the method taken in order to blend Hana and Immanuel into the family and to deal with the challenges and disabilities they came with.

The abuse Hana suffered eventually resulted in her death on the evening of May 11th, 2011. She died from malnutrition, hypothermia and gastritis. She was 13. Her body was covered in scars from being beaten with the plastic plumbing pipe, and her head was shaved. Hana was once again forced to remain outside in the yard in the cold weather on this night. Carri called an ambulance when she found Hana laying face down in the mud. During the EMT’s attempts to revive Hana, Carri repeatedly told them that Hana was “passive aggressive” and “rebellious”. Kathryn Joyce wrote a detailed report of the homicide and trial for Slate.

Larry and Carri Williams were both arrested in connection with Hana’s death, and their surviving eight children were taken into state custody. Once he was able to see a social worker and doctors, twelve-year-old Immanuel was diagnosed with Post Traumatic Stress Disorder, and his language development was noted as delayed, which is not surprising considering he was not properly accommodated for his hearing loss in the Williams home and likely not in the orphanage, either.He testified in court during the trial that he was unsure where Hana had gone, or what had happened to her, but he thought she was maybe dead. It is possible he was confused about what happened due to not being communicated with and not being able to tell what was going on due to his hearing loss.

Deaf children need specific one-on-one instruction and education around learning to sign, speak, read and write. They need speech pathologists, ASL interpreters, and instruction in sign language, and to be seen by an audiologist. It is impossible for one person to provide all of these services in a homeschool. The isolated nature of this type of homeschool also prevents a child like Immanuel from meeting and communicating with other Deaf children and adults. It is highly cruel and abusive to prevent a Deaf child from being able to communicate, and to use communication as a form of punishment, as the Williams did with Immanuel.

On September 9th, 2013, Larry and Carri Williams, who had tried to escape harsh sentencing by lying that Hana was older than 13, leading to her body being exhumed during the trial, were sentenced to prison. Each were convicted of manslaughter in Hana’s death, and Carri received an additional conviction of homicide by abuse. They were both found guilty of first-degree assault on Immanuel. Carri was sentenced to just under 37 years in prison, and Larry 28 years. The trial was attended by many from the local Ethiopian community, who sadly were all too familiar with this type of case. Immanuel and the other children were placed with family or in foster care.

As a result of this story, Washington State put emphasis on addressing issues with adopted children being abused, neglected, and murdered. From Kathryn Joyce’s Slate article:

Although the research was started before Hana’s death, her story became the focal point, and illuminated common forms of abuse that other children suffered: being locked in rooms or forced to stay outside, having food or access to toilets withheld, and social isolation, often including being withdrawn from school, that obscured the abuse. At least nine of the 26 school-age children were reportedly homeschooled, several because their mother “did not want the teachers feeling sorry for them because they are ‘all sad’ and looked like they are starved at home.” Abuse tended to spiral, as parents exaggerated children’s misbehavior, punishments increased in frequency and severity, and isolated children lost the possibility of reaching outside help.

The Role of Disability

Disability is an area that specifically needs to be studied with regards to cases of homeschooling in general, but also adopted homeschool children. Disabled children, and in particular d/Deaf children, are particularly prone to abuse. Disabled and d/Deaf children suffer from abuse at higher rates than able bodied children. There are many reasons for it. When a child is adopted, that can also add another layer of complexity in abuse cases. Parents can feel differently about adopted children than their biological children, and single them out for mistreatment. The presence of disability can serve to exacerbate an abusive situation due to the frustration it can cause parents.

Religion is another area where ableist biases can come to the forefront and facilitate movements where able-bodied adults seek to save and rescue children, thinking that any situation is preferable to the one the children were initially in. This is not accurate, and cases like Hana and Immanuel’s illustrate that disabled children need accommodations and services, and to be treated with respect and love. Disabled children do not exist to make adults more seem more “godly” to their religious communities. Disabled children are not commodities to exploit for government money. And they are not going to be “saved” simply by being adopted.

Conclusions

According to the World Bank, one billion people experience some form of disability, and levels of disability are higher in developing nations. Disability is not a bad thing, but a natural part of human biodiversity. However, much of the world is not built in order to universally accommodate all people. Disabled children like Hana and Immanuel are often put into orphanages and institutions globally, because there are limited services, infrastructure and education in their countries to support disability. Some disabled children grow up in institutions and never leave them. If there were services in their countries to support their integration into the community, that would be much better, as every person deserves to live in their community and in a home.

Just as institutionalization and keeping children in orphanages is a serious issue in disability rights, mass adoptions of disabled children from developing nations to the West is another side of the coin; and neither are optimal. The U.S. adopts more foreign born children than any other nation, so ensuring that disabled, adopted children receive their rights once on US soil is important, particularly if there are large movements, like the one written about above, to specifically adopt disabled children. In many cases, disabled children are adopted into families that are equipped to accommodate their disabilities and provide them with a safe and loving home, and this can be a wonderful option for a child in need. However, there are enough cases where the opposite occurs instead, and it is a cause for alarm. The fact that so many are in homeschools is also a cause for concern because as we saw with Erica Parsons, many states do not have disability rights law that cover homeschool, and homeschool can be used as a cover for abuse.

Further sources:

“Disability Overview.” Disability Overview. The World Bank, 21 Sept. 2016.

Hodson, Jeff. “Did Hana’s Parents ‘train’ Her to Death?” The Seattle Times. The Seattle Times, 28 Nov. 2011.

Jordan, Miriam. “Inside Ethiopia’s Adoption Boom.” The Wall Street Journal. Dow Jones & Company, 28 Apr. 2012.

Joyce, Kathryn. The Child Catchers: Rescue, Trafficking, and the New Gospel of Adoption. New York: PublicAffairs, 2013. N. pag. Print.

Kathryn, Whetten et al. “More than the Loss of a Parent: Potentially Traumatic Events among Orphaned and Abandoned Children.” Journal of traumatic stress 24.2 (2011): 174–182. PMC.

Marczynski, Evan . “Court Affirms Convictions of Williamses in Adopted Daughter’s Death.” Goskagit.com. Skagit Valley Herald, 23 Dec. 2015.

“Washington Couple Gets Nearly 30 Years in Prison for Death of Hana Williams.” NY Daily News. New York Daily News, 30 Oct. 2013.

Wtffundiefamilies. “Orphan Fever: The Evangelical Movement’s Adoption Obsession.”Religious Fundamentalism in Pop Culture & Politics. Tumblr, 16 Apr. 2013.

Homeschool, Disability and Homicide: The Story of Erica Parsons

Erica Parsons, for those who have not been following the story, was a little girl from North Carolina who has been missing since 2011. In September, her body was finally found when her adoptive father, Sandy Parsons, led investigators to the site of her shallow grave on his family’s South Carolina farm.

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Erica’s Story

Erica Lynn Parsons was born on February 24, 1998 in Moorseville, North Carolina, to Carolyn Parsons and Billy Dean Goodman. Carolyn did not feel she could adequately care for Erica, along with her three other children, and Billy Dean Goodman had serious problems with substance abuse and was regularly in trouble with the law up to his recent death in January 2016 from natural causes.Wary of putting Erica in foster care, Carolyn instead agreed to have her ex-husband Steve Parsons’ brother Sandy, and his wife Casey, adopt Erika in 2000.  Erica was born with disabilities, including hearing loss, which was discovered when she briefly attended public school. Based on her features and reports of intellectual disability, it is likely that Erica also had Fetal Alcohol Spectrum Disorder. According to the Charlotte Observer, Sandy and Casey Parsons received federal money to assist with Erica’s disabilities. They also received money from the state to care for her due to her status as adopted.  For unknown reasons, Casey, Erica’s adoptive mother, pulled the child from public school when she was little and registered her home as a “Christian Homeschool”. Due to the limited laws in North Carolina that govern homeschool regulations, it was not difficult for Casey to establish a homeschool at her rural home outside of Salisbury.

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Carolyn Parsons, Erica’s biological mother. 

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Sandy, left, and Casey, right, Erica’s adoptive parents, lying through their teeth on the Dr. Phil show. 

Erica was likely not educated at this homeschool, and certainly was not accommodated for her disabilities. Instead, she was routinely abused, starved and neglected up to her disappearance, often kept in a closet and fed dog food. Federal testimony from family members and those who knew the Parsons indicate that Erica was left out of family activities, and that her adoptive mother hated her and said she wanted to kill her. Casey Parsons’ sister, Robin Ashley, testified in court that Casey “couldn’t stand the sight” of Erica’s face, refused to let Erica call her “Mom”, and admitted to assaulting her. According to Robin, Erica reminded Casey of Carolyn Parsons, whom she did not like, and told Robin she was afraid she might lose control and kill her.

It is not uncommon in child abuse cases for one child in a family to be singled out for abuse, and often the reason is due to the child reminding the abusive parent of someone or something they do not like. Disability is a reason, as well, and can intersect with other reasons for abuse, neglect and homicide, or in some cases, be the sole reason for the abuse. In abusive families, the parents on occasion encourage everyone else to abuse the singled out child, which is what happened to Erica. Erica’s adoptive older brother Jamie testified that he had participated in abusing Erica from the time he was five years old to when he was sixteen and “could no longer stand it”. At one point, he said, he even broke her arm.

The abuse inflicted on Erica by her parents escalated to homicide, as we now know, but for years, no one outside the family was aware that Erica was missing, including her biological mother. After she was finally reported missing by her brother Jamie in 2013, law enforcement looked into her disappearance. Jamie reported to police that he had not seen Erica since 2011. Casey and Sandy maintained that Erica’s biological Grandmother Irene “Nan” Goodman had taken Erica to live with her in Asheville, and all was well. The FBI were not able to find evidence that Nan existed. There was no Irene in the Goodman family, as relatives from that side reported.

Since Erica was homeschooled, that was one way in which her disappearance was kept hidden. North Carolina homeschool law does not require the state to make sure that children in homeschools are necessarily being educated, treated well, or accommodated for their disability.

Homeschool and Disability

According to the North Carolina state government’s website, where one can begin the process of registering a homeschool, what is needed is proof that the parent, called the educational administrator, has a high school diploma or equivalent, an email address, intent to start the school, and a decision about whether it is religious or not. Attendance sheet templates are provided on the website, as are links to standardized testing which children are required to take every year. However, there is no minimum grade required to pass it. As far as receiving disability accommodations and therapies, that is up to the parent.

This is not to disparage homeschool, which, in optimal situations, can be very good, and in some states, there are options for parents to receive disability accommodations from their local public school. Homeschool law varies from state to state, but the type of lax homeschool regulations seen in North Carolina are not uncommon.

If Erica had continued in a North Carolina public school, state and federal disability laws would have covered her there, and the school would have to provide her with Special Education classes, speech pathology and other related disability accommodations. Instead, since she was homeschooled, the laws in North Carolina are not the same. It is entirely up to a parent whether or not they will provide disability related education, therapy and accommodations to a child. For Casey and Sandy Parsons, this was not a priority, in fact, it would have enabled Erica to potentially report the abuse and communicate with other adults about her life at home. Keeping Erica unaccommodated for her disabilities was a crucial factor to facilitating the ongoing abuse, as it often is in cases of abuse of disabled children.

I have a hearing loss like Erica’s, and I received speech pathology in school. I also received free audiology appointments and hearing aids, which were covered by the state, and my teachers were aware of my hearing loss and involved in making sure I received a good education, which is also important for someone with intellectual disability, as Erica had. Erica’s parents did not use the state money given to them to take Erica to an audiologist or a speech pathologist, and there was no one around to make sure it happened. They were eventually convicted of fraud for this, but by then it was too late. Erica was already dead.

According to the US Department of Education, there are over one million homeschooled children in the United States, a number which has been increasing since 1999. Disability has been  cited as a reason for parents to homeschool their children. In 2011, 17% of homeschooling parents said that their child having special needs was the reason for homeschooling, and 15% said the child having a “physical or mental health problem” caused them to homeschool. Incidences of parents citing disability as their reason for homeschooling have increased in the last decade.

Homeschool and Homicide

Along with rising numbers of homeschooled children have been reports of high numbers of homicides occurring within United States homeschools. Further research needs to be done on this area, but according to Homeschooling’s Invisible Children:

Our preliminary research suggests that homeschooled children are at a greater risk of dying from child abuse than are traditionally schooled children. This preliminary finding is based on an analysis of the cases in our Homeschooling’s Invisible Children (HIC) database and on national government reports on child maltreatment.

If disability is one of the major reasons cited for homeschooling children, this is an issue, since disabled children are susceptible to abuse at higher numbers than able-bodied children. Deaf and hard of hearing children experience abuse at higher rates than hearing children, and intellectually disabled children are also victims of crime in high numbers. The combination of a vulnerable population (disabled children) with an area not subject to enforcement of their rights and protection (homeschool) is cause for serious alarm, and may be a reason behind the high numbers of homeschooled children being killed.Having a disabled child can cause parents to become stressed, overwhelmed, and to resort to violence, according to the CDC.

If we are going to try and reduce the number of homicides of disabled children, we have to look at homeschools. Erica was not just murdered, she was subjected to years of torture. She was starved, beaten, isolated, kept in a closet and neglected. Not accommodating a disability is also abuse. Erica was not taught sign language, she was not given hearing aids, she did not see a speech therapist, and she was not accommodated for her intellectual disability. This adds another level to her suffering and isolation.

Currently, an autopsy is being performed on Erica’s body, and Sandy and Casey Parsons, who are both in prison on fraud charges, are awaiting further sentencing for their roles in the homicide.

A Call for Humility in Criminal Justice: Dean Strang Visits Syracuse University

 

“Human endeavors are muddy. They are imperfect by definition.” Dean Strang

 

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Strang speaks at Hendrick’s Chapel as part of a Maxwell School Lecture. {image description: a man in a dark navy suit with an orange and blue striped tie stands at a white wooden podium with a sign affixed to it which says Maxwell School. He has dark brown hair and glasses with dark eyes, and is standing on a stage. There is a black speaker on a stand next to him, on the ground. A large door with a pediment on it is in the background. The architecture has a classical feel.}

Friday September 9th, 2016– Criminal defense lawyer and Wisconsin Innocence Project advisory board member Dean Strang, known for his role as Steven Avery’s defense lawyer in the Emmy award winning series Making A Murderer, spoke at Syracuse University’s Hendrick’s Chapel as part of the Maxwell School’s State of Democracy lecture series.

The Making a Murderer series, which first aired in December, 2015 on Netflix, highlighted police corruption and raised questions about how the criminal justice system treats people who are disabled, lower-class, and less educated, using the story of Steven Avery, wrongly convicted of rape, as a real life example of these issues.

Some background on the case, for those who may not have watched the show: Steven Avery was initially targeted by law enforcement in his home area of Manitowoc County, Wisconsin, due to a conflict involving his cousin, who was married to the Sheriff. An incident in which Avery displayed anger and aggression towards his cousin, but did not hurt her, allegedly caused the cousin to seek revenge through her husband and his connections in local law enforcement. Avery had behaved this way towards his cousin due to salacious rumors she had been spreading about him, including filing alleged false police reports.

What began as a family conflict became something far more insidious as those involved used their positions in law enforcement to conspire against Avery, leading to him being wrongly convicted of the brutal rape of a local woman, Penny Beernsten, in 1985, when Avery was 22 years old, and sentenced to 32 years in prison. Beernsten was part of the prominent local Beernsten family, who ran a successful and well-loved local candy store. Avery was eventually cleared of those charges due to DNA evidence, but not after spending almost two decades in prison.

After his release, Avery and the state sought to sue Manitowoc County, the Sheriff, and the District Attorney for thirty-six million dollars for wrongful conviction. Local criminal Gregory Allen, who appeared similar in facial features to Avery, and who had a long criminal history of rape and assault, was in fact the offender, proven by DNA evidence. While Avery was locked up, Allen committed another assault. The county knew, back in 1985, that Allen was dangerous and had even been monitoring him. It became clear as the case unfolded, that not only had the county wrongfully convicted Steven Avery, and seemed to do so on purpose because they didn’t like him, but they had also let a dangerous and violent criminal remain free. More details on the timeline and the case can be found here.

Steven, with his friendly, yet direct and honest nature, became a Wisconsin celebrity after his release from prison, and garnered respect and attention from many people in the state government, as well as the public, for his efforts to protect others from being wrongfully convicted of crimes. Penny Beernsten publicly apologized and the two had a tearful reunion. When asked by the press if he was angry at Penny, Steven said, “No. It was an honest mistake. And I think the Sheriff put in in her head.”

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Steven Avery speaks to the press in Wisconsin. {image description: a serious looking man surrounded by press microphones with news outlet logos on them, one is FOX 11, another is Action 2 News, looks to be answering a question from a person off-screen. He has short blonde hair, blue eyes and a goatee. Behind him is a suited man, with a red tie, whose head cannot be seen.}

The publicity combined with the civil suit resulted in alleged retaliation on the part of the county, and Avery yet again found himself embroiled with local law enforcement, who arrested him for the murder of photographer Teresa Hallbach, in 2005. Making a Murderer largely focuses on the Theresa Hallbach murder trial, which took place in 2007.  There are many reasons to believe that evidence against Avery was planted, and that he is innocent,  outlined in detail in the series. Avery was convicted and sentenced with life without the possibility of parole for the murder, which his attorneys continue to appeal.

Dean Strang was one of the defense attorneys on the Hallbach trial, and developed a cult following after the series aired. He is particularly popular among younger people, which may strike some as surprising, due to Dean’s button-down appearance and status as a middle aged, Midwestern man, traits which are not conventionally ones which propel someone to celebrity. However, Dean is very much admired by those who are aware of the inequities in criminal justice, and his work to draw attention to and change those inequities has won Dean consistent respect not just in his own field, but now with the American public. His warm personality and genuine nature are also traits which endear him to many, traits which were clear at his Hendrick’s Chapel presentation.

Disability and Class

Background given in the series mentions Avery’s intellectual disability and his diagnosis with an IQ of 70 as a child. He attended a school for disabled children. In disability culture, basing ability on a person’s IQ is considered outdated and erroneous, and it needs to be more widely understood that IQ is problematic, but it is a fact involved in this case that is important to be mentioned, because it indicates that Steven has an intellectual disability, even if it is not the best way of understanding his disability.

The Avery family were known in their small, rural area as being outsiders, and different. They were insulated from others, lived on their own road which bore the family name, and ran a salvage yard. They appear to be a close-knit, loving family, and Steven’s parents have always been supportive of him throughout his legal troubles. However, the family was perceived as belonging to a less desirable socioeconomic class, and were a target of local derision.

When Steven was a young man, he was often unkempt, his hands dirty from working on cars, and he had always struggled in school and did not go to college. The Averys were different from families like the Beernstens, for example, who were suburban and upper middle-class. The Averys were perceived differently, and treated differently, and Steven’s disability was a contributing factor in this treatment, as intellectual disability often is.

Another disability angle to this story is the interrogation of Avery’s nephew, 26-year-old Brendan Dassey, whom law enforcement accused of helping Steven brutally rape and murder Theresa Hallbach. Brendan, who also is intellectually disabled, was interrogated by police when he was a minor; he was 17 at the time of his arrest. Brendan did not have a parent or legal representative present during his four interrogations, and his mother stated that Brendan did not fully comprehend what was happening. No accommodation was made to ensure that Brendan could access and understand the information he was being presented with and asked to talk about during his arrest and interrogation. Brendan was convicted of rape and murder, and sentenced to life in prison without the possibility of parole, a sentence which has recently been overturned.  However, the state attorney general quickly filed an appeal, prolonging the time Dassey has spent in prison even further. Without an appeal, he would be free in 90 days. He has spent almost ten years incarcerated.

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Brendan Dassey in 2006. {image description: a teenage boy wearing a black sweater with a leather belt around his waist which his handcuffed hands are attached to by a chain, hands crossed in front of him, is escorted on either side by two police officers in brown shirts and pants. The young man has glasses, short light brown hair and looks sad, his eyes downcast and his lips pursed. In the background is a sawhorse and two other men.}

Dean Strang, who did not represent Dassey, stated that he was “Not surprised” by the state’s appeal. “The state often is very interested in preserving the status quo. And the status quo right now is that Brendan Dassey is convicted, he is in prison and this sort of inexorable pressure to keep him there I think, makes it no surprise the attorney general’s office sought to appeal,” said Dean.

A Call for Humility 

A theme of Strang’s speech at Syracuse University was the need for humility in criminal justice. For those involved in the system to be able to admit when they are wrong, and to understand that the nature of being a human is imperfect.

Instead of having that humility, instead of being able to look back on their work and say, “I misunderstood this situation, I didn’t have all of the information I needed, I was wrong and this mistake needs to be corrected,” those in positions of authority in the criminal justice system all too often focus on upholding their decisions and judgments, Dean explained. Professor Lauryn Gouldin, from Syracuse University College of Law, who presented Dean to the audience and joined him on stage, added that empathy was also necessary.

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 Syracuse University College of Law professor Lauryn Gouldin and Dean Strang on Stage {image description: two people sit in brick red armchairs with a table with sunflowers on it in between them. The person on the left is a woman with a black suit, glasses and medium length blonde hair holding a paper on her lap and listening to the man, who is speaking. The man is wearing a white shirt, a blue and orange striped tie and navy suit paints with black shoes. He has glasses and dark brown hair, and on hand is gesturing in the air as he talks. Behind them is a screen with an orange Syracuse university print on it, and a vertical banner sign for the Maxwell School, grey and white with an orange top.}

 

 

During the Q & A section of the presentation, I asked Dean how humility and empathy can be practiced in criminal justice when there is a fundamental lack of knowledge about disability studies. How can one know they have made a mistake and used unfair judgment when their entire idea of intellectual disability is wrong, and their education on disability issues sorely lacking?

“The court system is very, very slow to accept changes in policy or to accept a new understanding of an issue such as intellectual disability”, Dean responded, “whether it is something like the science surrounding it, or a disability studies perspective. Those who work in the criminal justice system who tend to possess a better understanding of disability are the ones who work directly with disabled people, such as a parole officer”. But, Dean said, “by the time a person is working with a parole officer, that means there has been a conviction, and that is a problem. It needs to start with the police. Police must be trained to understand disability and a lot of cities have police departments now that are accepting this and doing work on it. It’s changing and that is very good, but it takes a long time.”

Life Without the Possibility of Parole

Another extremely pressing issue in criminal justice that Dean spoke about is the bias that marginalized identities and the impoverished face. Impoverishment, Dean said, is not just about a lack of money. It is often an impoverishment of education, of family or of support. People from this type of background end up embroiled in the criminal justice system at higher rates.

Increasingly, the sentence of life without the possibility of parole, which was given to both Dassey and Avery, has replaced the death penalty, and this sentence has increased in frequency since the 1980s. Many inmates with a life without parole sentence were given it before they were 18 years old, and 40% of people sentenced as juveniles to life without parole were in a special education class growing up. Brendan Dassey is one of them; he attended special education classes for support, and as mentioned, Avery went to a school for disabled children. The United States is the only country in the world which sentences minors to die in prison, some as young as 13 or 14 years old.

Reports from the Bureau of Justice Statistics confirm  what Strang said at Hendrick’s Chapel. Data Collection: Survey Of Inmates In State Correctional Facilities (SISCF), as interpreted by the Prison Policy Initiative found that:

“..In 2014 dollars, incarcerated people had a median annual income of $19,185 prior to their incarceration, which is 41% less than non-incarcerated people of similar ages.The gap in income is not solely the product of the well-documented disproportionate incarceration of Blacks and Hispanics, who generally earn less than Whites. We found that incarcerated people in all gender, race, and ethnicity groups earned substantially less prior to their incarceration than their non-incarcerated counterparts of similar ages.”

One thing that is crucial for intellectually and otherwise disabled people is having a good support network, and money can make this a lot easier. Steven Avery and Brendan Dassey were surrounded for the most part by a supportive, loving family but that is not enough, unfortunately. Part of a support network for a disabled person has to be someone who understands law and civil rights, like a lawyer, as well as good teachers, social workers, and advocates. Having access to this type of information often comes with expense or difficulty, particularly in a very rural area.

Intellectually disabled people are routinely subject to discrimination in criminal justice, and are often victims of crime. According the the ARC:

“People with intellectual, cognitive or developmental disabilities get involved as both victims and suspects/offenders more often than individuals without disabilities. Individuals with this disability also constitute a small, but nonetheless growing percentage of suspects/offenders within the criminal justice system. While those with intellectual disability comprise 2% to 3% of the general population, they represent 4% to 10% of the prison population, with an even greater number of those in juvenile facilities and in jails (Petersilia, 2000). 

Many individuals unintentionally give misunderstood responses to officers, which increase their vulnerability to arrest, incarceration and possibly execution, even if they committed no crime (Perske, 2003). ”

Further, those with Intellectual Disability are more likely to confess to crimes they did not commit, due to confusion, and tell police what they want to hear. This is why it is important for law enforcement to be trained on how to work with people who have Intellectual Disability; as Strang said; “It starts with police”.

We have to remember that these cases are complex, that there is a complex human story behind every sentence, and it might not be what you think. Having humility and empathy can lead to a better understanding of the complexity of human life, and the reasons that people end up sentenced to life with out the possibility of parole. The justice system often offers simplistic solutions to very complex human problems, with a one size fits all mentality. It is not working, and is instead resulting in impoverished, disabled, often juvenile citizens from difficult backgrounds being harshly sentenced to overcrowded, abusive prisons full of infectious disease, gangs and other problems, which affect society as a whole. After the presentation, I met Dean at the reception. He was really nice and told me about a case to research about Deaf people in the legal system. We are very pleased that he came to Syracuse University!

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The author on the left, with Dean Strang and her interpreter and friend at the Maxwell Reception. {image description: Three people smile for a photo in front of a wooden paneled wall. On the left is a young woman in a black and white gingham dress, with long, dark hair, with her hands folded behind her back. Next is Dean, who is wearing a white dress shirt, orange and blue tie, and navy dress pants. He has square framed glasses, his hands are at his side, and he is smiling. Next to Dean is a young woman in a black sweater, smiling at the camera. She has a blond braid down her shoulder and her hand at her side.}

 

Further reading (trigger warning: violence, abuse and rape in first article, and in the books mentioned):

http://america.aljazeera.com/features/2014/1/sentenced-young-thestoryoflifewithoutparoleforjuvenileoffenders.html

https://www.amazon.com/Couldnt-Keep-Myself-Correctional-Institution/dp/006059537X

https://www.amazon.com/Disability-Incarcerated-Imprisonment-United-States/dp/1137404051/ref=sr_1_1?s=books&ie=UTF8&qid=1475093163&sr=1-1&keywords=disability+incarcerated

 

 

 

 

The Danger of “Me Before You”

Me Before You. I feel like I would be remiss in not covering this potent disability rights topic. There has been tremendous outcry from the disability community towards this film, in theatres now, which is a love story, if you want to call it that, between a man who uses a wheelchair and his caretaker. It is an old story, a romance between caretaker and patient, or nurse and patient, and it has happened many times in history. I am reminded of Peter Stuyvesant marrying his nurse after she cared for him when his leg was blown off by a cannon, in the seventeenth century. She cared for him for a full year, and during the course of that time, they fell in love. Peter healed, and wore a prosthetic leg afterwards, although he always had discomfort from his accident. Unlike the male protagonist in Me Before You, however, Peter went on to live his life, becoming the director-general of New Netherland, now New York City, and going down in history, his prosthetic leg apparent in many statues and paintings of him. I have never heard of anyone thinking Peter Stuyvesant was pitiful or weak because of his prosthetic leg, which is a disability. No one thought that maybe Peter should just give up and retire, or maybe even kill himself. While historic figures like Stuyvesant can be problematic, and this is not to exalt him, he is an example of a story in history that mirrors Me Before You.

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Peter Stuyvesant. {image is of a bronze statue of Peter in 17th C. clothing; a doublet and short pants. He has a skull cap over his shoulder-length,wavy hair, is resting on a walking stick, and one leg is a prosthetic. He appears strong, confident and somewhat cocky, which he was.} Poor Peter. Maybe he should just have died? What a sad burden.

In Me Before You, Will Traynor, a disabled banker, and his caretaker, Louisa “Lou” Clark, fall in love after she becomes his assistant, or caretaker, or whatever you want to call it. Of course Will is fabulously wealthy, and his family owns a castle, but he is a quadriplegic, so none of that matters, and Will wants to die. He also cannot have sex, another tragedy. Will decides to die by assisted suicide, or euthanasia, because clearly his life is just one tragic farce in which he can no longer do anything, and using a wheelchair to navigate around is a fate worse than death, and god forbid he be a continued burden on Louisa or anyone else. These are the ideas in the film, presented here with a dose of sarcasm.

For those who are unfamiliar with this trope, it is entirely too common and unfortunately is representative of dangerous ideas about disability, paralysis, and those who use wheelchairs. There are many out there who have not had any kind of considerable personal or intimate interactions with disabled people, or, in particular, a person who uses a wheelchair, at the peer level. Many people I meet have never interacted with a Deaf person before, for example, and often do not know how to treat me at first, if ever, and think things that are just astonishing about deafness. For this reason, a story like Me Before You can be very effective, as it plays into stereotypes held by those who do not experience disability, and the prevailing idea is that disability is a tragedy which prevents one from being able to live a full life. For many able-bodied people, the thought of becoming disabled is horrifying, and indeed, a fate worse than death. They believe that their lives will just stop, become meaningless, and they will be thought of only as burdens upon their families, friends and society, and they also can never have sex or a relationship. The human imagination, and a large influence on human imagination, the media, works to propel this notion rather than to dispel it, and Me Before You is just another example in a long line of ableist narratives. So is it just a fantasy, a harmless love story?

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Promotional image from Me Before You. {Image is of the smiling lead actress, looking off camera, wearing red lipstick. Picture is captioned “Push yourself. Don’t Settle. Just Live”. } Live, yes, but not if you are disabled. Then you should maybe think about dying, you total burden on humanity. 

For a story like this to resonate with able-bodied audiences, it must play to their fantasies and biases. It affirms their beliefs rather than challenges them, and unfortunately, has very real-world consequences, in particular, euthanasia of the disabled and mentally ill, which is a huge issue in disability rights. Many disabled people, myself included, are aware that our lives are not viewed as being the same and having the same value as an able-bodied person’s, and in the medical community, we are thought of as defective. When I tell able-bodied people this, they are often stunned, and find it hard to believe. Well, it’s never happened to them. They haven’t experienced it. It’s like race; you’ve got to listen to what people are telling you they experience. If you are part of the mainstream and are not marginalized, you are just not going to have the same experiences. Any marginalized identity is going to experience stigma and biases which often threaten their lives, in particular those with intersecting marginalized identities.

Within the medical model, disability is something to be cured or fixed, and if it cannot be cured or fixed, then the idea becomes that we ought to perhaps humanely put disabled people to sleep. And it happens all the time. This dangerous belief also influences homicide of disabled people, in particular children by their parents, and the resulting sympathy for the murderer over their disabled victim, because the disabled victim was a “burden” and “defective” anyway, and did not have a good quality of life.

Disabled people are murdered at very high rates, they experience abuse and homicide more than other groups. A lot of people with marginalized identities understand that the mainstream is often trying to push them out, get rid of them, or kill them, or in the case of euthanasia, get us to kill ourselves, albeit with a little help. Because if you do not have a mainstream identity, then you are devalued. And there is nothing romantic about that.

Back to Peter Stuyvesant and his nurse, Judith Bayard. When studying history during undergrad at Hunter College in Manhattan, Peter’s story was one we were made to study, as we were living in a city full of things named for him. I was struck by it at the time, and it made my imagination wander. Prior to reading about it, I was certainly familiar with “peg legs”, because as a child, often pirates in the stories I read or cartoons I watched on TV had one. However, I learned that Peter’s injury almost killed him, took a very long time to recover from, and that his prosthetic leg was uncomfortable, and often his injury flared up. His disability experience became more palpable, and I thought at the time of the loving care he received from Judith after he returned to Holland to recover. I thought the story was very romantic. The two had spent a lot of time together, must have gotten to know each other as a result, and fell in love. I wondered about that process and wanted to know more about it. After Peter recovered, he and Judith, his new wife, went to New Amsterdam,  where Peter would go on to live his life as the man he always had been; irascible, steely, energetic, powerful, and poetic. The story is not any less romantic, and Peter’s disability did nothing to fundamentally change his life or who he was, and that is because Peter’s story is real; it actually happened. It is representative of a real disabled life. Real disabled lives are worth living. It is only within fiction that they are not, fiction based upon tired notions and biases. However, these tired notions have a way of seriously influencing the lives of disabled people who are not living in the realm of fictionalized fantasy, and that is where the problem lays. Me Before You is not just stupid, it is dangerous, and will have lasting affects over the lives of those with disabilities, as it contributes to already existing ideas on the quality of our lives.

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Protesters outside a showing of Me Before You, holding posters made by disability rights organization Not Dead Yet

 

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Historic Disability Rights protest with many famous disability activists.