Eminem’s Deaf Culture Song

Sometimes in Deaf and Disability Culture, something serendipitous happens. Media is somehow, somewhere, amazingly accessible and in touch with your culture. Something that you were not expecting, that was not necessarily supposed to be accessible, and was created by seemingly able-bodied and hearing people for other able-bodied and hearing people, is amazingly accessible. Well I had that experience with Eminem’s video and song, Tone Deaf. Now, as a Deaf person, I take issue with the term tone deaf. It is one of those annoying phrases like blindsided. It comes from able-bodied culture and it is kind of pejorative to disability. Disabled people tend to not like those kinds of terms. It is not the biggest deal in the world but you will definitely get met with a heavy sigh and an eye roll, or the equivalent, if you use that terminology around us. But in this song, it actually is fitting. Eminem is rapping about not wanting to hear what I would describe as bullshit, or the kind of yammering on that people who are hearing tend to do sometimes. In the beginning of the video, a police officer is trying to yap at Em through a window, and Em says, “I can’t hear you. I’m tone deaf.” Trying to hear someone through a window is a thing that I can understand. That is not happening for me. I also can’t hear through walls, in case anyone was asking. Hearing people love to try to talk to you in situations where you absolutely are not going to be able to hear them. If they were signing? Well then yes, I could see that through the window. Hear? No. Now what is the superior language? But I digress.

The song starts out captioned immediately and shows Eminem sitting in the car with the windows rolled up, and he is using headphones (the type that would fit over my hearing aids and which I use to hear music) and he says to the police officer, “Yeah. I’m sorry. Huh? What did you say? I can’t hear you.” Now, normally, that might irk me, because hearing people love to pretend they are deaf when I tell them I am hard of hearing, or Deaf, or whatever. They love to say, “huh? what?” and laugh to themselves when a Deaf person tells them they are Deaf. That is the most irritating thing in the world and it is rude. If this is you, please don’t do this. With Em, and I am going to call him Em because he gets a Deaf Culture pass, and that is also easier to say and write, it is not annoying or offensive when he says “Huh? I can’t hear you”. It is funny. At least to me. It is relatable. It makes me think about when I am at a meeting at work and someone is going off on a tangent, using too many weird metaphors, or trying to obstruct the truth. Sign language has a hard time translating that stuff. My ASL interpreter will tell me, that person is going off the point, or, basically, that person is spouting bullshit. Because I will ask my interpreter (in ASL, of course): Do I really need to hear this? And when a trusted interpreter tells you, no, you don’t- you can tune it out until it starts making sense again. Hearing people love to say that I have “selective hearing”. I can hear if I wanted to. I just tune people out. No, I am Deaf. I can’t hear a lot of things unless I have access. If I am tuning you out, maybe it is because what your saying is not really important enough for me to waste my precious hearing resources on. Maybe I don’t need to strain my ears and try extra hard to read your lips right now, for obvious reasons.

Next, the video shows Em flipping off the cop who he cannot hear. He is not sorry he cannot hear. He is not embarrassed. He is being direct: he doesn’t care. Well that is liberating. For many Deaf people, we grew up trying to appease hearing people all the time, feeling bad that we cannot hear them, that we have trouble speaking, that we have to try to speak and hear. And it can be exhausting and difficult. Well, Em is saying (and signing-because flipping the bird is definitely used in ASL) what we all want to do at times: I can’t hear you, I have an ear inFUCKtion. Which is a play on words. The captioning on the video, which I did not have to turn on, it is built-in, clearly shows how this play on words works in a way I can understand. The captions highlight the FUCK. So you can see, oh yeah, he did not say FECT. He said FUCK. And right at that moment, he flipped the bird. Even more accessible. Now, I apologize for bad language, but what we are talking about is access, and that means being direct, clear, and to the point. No smoke and mirrors, no tangents, stating exactly what is going on- and this is what Em is saying. This is rap we are talking about.

The video continues with animated, built-into-the video captioning of everything Em is rapping. And the words bounce around, become an object, and otherwise illustrate the words that Em is saying creatively, and also accessibly. He even says, “cerebral palsy”. But it is not making fun of anyone. He just says it. It is kind of cool to just hear a disability mentioned, but not pejoratively. He also talks about psychiatric disability and medication. There are a lot of disability themes and probably more levels of analysis here to be done.

The other refreshing, liberating thing about this video is that often with disability, able-bodied and hearing people try to protect us from stuff. The kind of stuff that might be in a rap video. Well, I am a grown disabled adult and I like rap just like anyone else. In fact, I have loved rap since I was a kid. I was, after all, born in the 80s. But when I was growing up, TV did not always have captions and I certainly could not hear lyrics in any song without a lyric sheet, and hearing the radio is very hard for me. Sometimes CDs and tapes came with lyrics and I would be elated when that happened. Sometimes a music video on MTV would have captions. Otherwise, I just kind of had to try my best to hear the lyrics, or I just decided they didn’t matter and enjoyed the beat. A lot of music for me is about the beat. But I still want to know what the song is about. What are they saying? There is a story here. Especially with a rap song. And rap needs to be more accessible, even if it is talking about sex, drugs, using bad language, or whatever. Disabled people do not need to be protected from anything. We need access to all things.

Now, I use Rap Genius and other sites for lyrics. I have a whole set up to hear rap. I use a bluetooth speaker and Shazaam the song. Often, the Shazaam app has a lyrics option to hit when the song comes up. It will display the lyrics in time to the beat, too. But not always. On Spotify, there is a LiveLyrics option, which I am still learning about, which pops the lyrics up to a song you play. A bright orange bar flashes on the lyrics that are being sung at that exact moment, which is also accessible. Because music moves. Music has a beat. Tone Deaf really captures that. In fact, I think Tone Deaf has better CC than any CC that would be added after the fact by a captioner. The animators of the video did that. I would love to know if they realized how accessible to Deaf people they were being at the time. Perhaps it just happened that way.

Em goes on to rap the hook of the song: I can’t understand a word you say/I’m Tone Deaf/I think this way I prefer to stay. Rapping “this way I prefer to stay” is not how a hearing person would say it. A hearing person would say, “I prefer to stay this way.” But in ASL, you would sign, “this way I prefer to stay.”

Em is saying, he can’t hear you, he does not care that he can’t hear you, he prefers to be this way. As I might say, I am proud to be Deaf. I am Deaf and proud. Well, this video makes me think that maybe Eminem gets that. I feel like Em gets Deaf Culture, he has tapped into it, somehow this video happened.

Em is also known for using amazing ASL interpreters at his shows. Well that is one way, just one way of having access. Captions are highly important, too. ASL is not word for word translation of spoken language. It is a language in itself. So when someone interprets, they are signing the concepts and the ideas and things like that, not necessarily the words. So ASL is one way of translating what is going on to a Deaf person. But it is not going to necessarily pick up on Em’s plays on words like inFUCKtion. The captions are best for that, especially the type and style of captions used in this video. Captions are important for many people, not just Deaf people, but other disabled people, like autistic people. Captions are also often enjoyed and appreciated by hearing and able-bodied people, too. Everyone appreciates a little clarity.

I am interested to know other’s thoughts on Em’s song and if he does deserve a Deaf Culture pass. Because I might be wrong, but I think this is a Deaf Culture song. And rap itself is very Deaf Culture- it is loud, it is direct, it is often concise, it is to the point; for the most part rappers annunciate clearly and often are looking right at the camera in the video-and yes, they move their hands to the beat of the song, too. Deaf people like myself, well, we love loud (if there is sound involved), direct, concise and powerful. And yes, there are Deaf rappers who use sign to rap, and this also makes a lot of sense. Rap is about creating something with words, using lyrical play- well ASL can be that way, too. ASL creates worlds with the hands, illustrates concepts, and is very direct. I think that rap and Deaf Culture is a definite marriage- and we need more animated CC like we get in Tone Deaf.

Intellectual Disability and Police: 5th Amendment Issues

In the United States, two to three percent of the population has an intellectual disability (ID). What is an intellectual disability? According to The ARC:

“Intellectual disability is a disability that occurs before age 18. People with this disability experience significant limitations in two main areas: 1) intellectual functioning and 2) adaptive behavior. These limitations are expressed in the person’s conceptual, social and practical everyday living skills. A number of people with intellectual disability are mildly affected, making the disability difficult to recognize without visual cues. Intellectual disability is diagnosed through the use of standardized tests of intelligence and adaptive behavior.”

Intellectual Disability used to be referred to as mental retardation. Mental retardation was a blanket term given to certain disabled people starting in the mid 20th century. It replaced the prior term feeble minded. Feeble minded was a label applied to many types of people during the eugenics era of the early to mid 20th century, people who were considered “genetic defects” by those in positions of power. The term was given to disabled people and other “undesirables” by doctors, nurses and those in academia and public health. Eugenics was a widely accepted philosophy at this time, and was an inspiration for Nazi Germany’s extermination programs. The first group targeted for death by Nazis were disabled people. After World War II, eugenics was largely disbanded and considered to be bad science, however the philosophy is still present today under other names.

Labeling someone feeble minded often resulted in that person being sterilized and institutionalized for the rest of their lives, since it was believed during this era that disabled people should not reproduce, an idea that many people today still think. People of color were more likely to be labeled feeble minded, as were people who were impoverished. During the eugenics era, the terms “idiot”, “moron” and “imbecile” were used to describe different types of disabled people. These words are considered slurs to intellectually disabled people today, and should not be used.

An image from the eugenics era showing a chart with “idiots, imbecile and morons”.

Mental retardation is also considered an offensive term today, and intellectual disability, cognitive disability, and developmental disability have replaced it. Both mental retardation and feeble minded are meaningless terms that were used to oppress, segregate, sterilize, institutionalize, and kill people. All types of disabled people could be labeled with these terms, even if they were not intellectually disabled. The beliefs and biases from these eras still persist, and it is important to be aware of them.

Intellectually disabled people used to be considered unteachable, and were often kept in asylums like one in Rome, New York, established in 1894, which was called the Rome State Custodial Asylum for Unteachable Idiots. Today, this former asylum is a medium security prison, which is not a far cry from what it used to be. People in such places were abused and mistreated, and it is a painful, terrible history that able-bodied people may not be aware of, but many disabled people know about. It is a part of disability history. My friend Al, who is autistic, was taken away from his parents as a child in the 1950s and placed in this asylum, where he was routinely beaten. He lost contact with his family and never saw them again.

The Rome Asylum, Rome, N.Y.

Starting in the 1950s, laws around mental retardation began to change. In 1975, it was ruled under the Individuals with Disabilities in Education Act (IDEA) that disabled people had to go to school, and had to have supports. Prior to this, disabled people largely did not go to school. Instead, they were institutionalized in places like the Rome asylum for their entire lives. Today, disabled people are a part of the community, and community services also exist to provide supports. Intellectually disabled people are not unteachable and many go to college thanks to programs like InclusiveU at Syracuse University, although many intellectually disabled people are mainstreamed in college, too. Intellectually disabled people have relationships, get married, have children and do everything that able-bodied people do. There are still many biases that exist around intellectual disability, and there is still a lot of work to do for society to be fully inclusive and accessible to intellectually disabled people. However, when an intellectually disabled child is diagnosed, the knee-jerk reaction in the United States is not to institutionalize them anymore, although this still occurs all over the world, where the asylum model continues to exist. Intellectually disabled people are no longer completely segregated in institutions, they are a part of our community- although often disabled people in the United States still do experience types of institutionalization such as nursing homes. However, the best idea for intellectually disabled people is to live in the community and to be independent. This can happen with proper supports and services.

One area that has replaced asylums for intellectually disabled people is prison. While ID people make up two to three percent of the population of the United States, in prisons they make up four to ten percent of the population. Many ID people were convicted as juveniles and sentenced to life without the possibility of parole (LWOP). According to The Sentencing Project, 40% of LWOP inmates who were sentenced as juveniles were in special education prior to their conviction. The Supreme Court decision in Miller v. Alabama, which I have written about here, states that juveniles can no longer be sentenced to LWOP, but many of these inmates are still in prison.

Police Interrogation, Conviction, and Sentencing of ID People

Why are there so many ID people in prison today? The answer begins with police. Arrest is the gateway to the criminal justice system. When someone is arrested, they should be read their Miranda Rights, which is a right under the 5th amendment of the constitution. Miranda Rights state that you have the right to remain silent, that anything you say can and will be used against you in court, and you have the right to a lawyer, one which will be provided for you if you cannot afford it. After being read your Miranda Rights, if you say that you understand, police can legally begin to question you. For ID people, this is where problems begin. According to the Stanford Law Review’s “Interrogated with Intellectual Disabilities: The Risks of False Confession”, ID people roundly do not understand Miranda Rights. Yes, someone might say they understand these rights, but studies that really look into the issue show that ID people do not actually understand them. Miranda Rights were not written with ID in mind, and were not created to be accessible to ID people, and it is in the interest of police to get you to waive them. According to the Stanford Law Review:

‘Officers often “de-adversarialize” the Miranda process by creating the illusion that the police and the suspect share the same interest. The officers are allowed to talk with the suspects before they issue the Miranda warning, during which they can lull the suspect into a false sense of security by building a relationship and creating a “favorable climate to confess.”’

For ID people, making a friend and wanting to please are characteristics of the disability, often due to how they have been socialized, their experiences growing up, and what they have been told in special education or by those who provide services, as well as just being a part of the disability. It can be impossible for an ID person to recognize the adversarial nature of Miranda warnings, and to tell when a police officer is only pretending to be their friend. When an ID person thinks that the officer is their friend, they may tell that officer what they think that person wants to hear, then thinking they can go home afterwards. Also, another characteristic of ID can be that someone is more likely to take blame and believe themselves to be blame-worthy when they are not. ID people can become embroiled in crime because an able-bodied person manipulated them and fooled them into becoming a part of it. However, an ID person is more likely to take the blame, both from their own perspective, and from the perspective of the criminal justice system.

Retired police deputy Jim Concannon, who has an ID son, writes that, “As a deputy sheriff I never witnessed intentional bias. But the arrest process starts with us, and several factors can lead to higher rates of arrest for people with cognitive disabilities…As one police officer put it, ‘They are the last to leave the scene, the first to get arrested, and the first to confess.’”

ID people can become easily confused by police questioning, which is largely based on the Reid technique. This technique has been widely used since the 1930s, and was not designed to be accessible to ID people. Prior to the Reid technique, police would be much more aggressive and adversarial in an interrogation, which may have made it more obvious that they were not your friend. The Reid technique is designed to be psychologically manipulative, and to coax a confession out of a suspect using certain techniques. This causes problems for ID people. It is far less obvious that the police are not their friend when the Reid technique is used.

This confusion and desire to please leads to false confessions. Once police obtain a confession, it is very hard to say you did not mean it. In the court system, a confession almost guarantees that you will be convicted.

A good example of this is the case of Brendan Dassey, an ID young man who was featured in the docuseries, Making A Murderer and its sequel, Making A Murderer II. When Brendan was 17, he was arrested and questioned by police without a parent or disability advocate present. He was confused by the questioning and told police what he thought they wanted to hear, thinking he could go home if he did so. When reading transcripts of the confession, it is easy to see how police put ideas in Brendan’s mind and coaxed him into a confession. Police told Brendan details of the crime, which he did not know prior, and then asked him if he did those things. Brendan did not volunteer details of the crime or confess to anything at length of his own admission. It is also not legal to interrogate a minor without a parent present, but this did not matter to the court enough to throw the confession out.

Brendan Dassey in his prison jumpsuit, being led in custody of police.

Subsequently, Brendan was convicted of murder and sentenced to life in prison. He has appealed numerous times based on the false confession, but still remains in prison. There is no forensic evidence tying him to the crime. Some judges threw the confession out, others have upheld it. It is very hard to appeal based on a false confession. The docuseries goes into detail around what happened with Brendan’s confession, conviction, sentencing and appeals.

Sometimes, police are unaware that someone they are questioning has ID. Training and education for police can help teach them how to know if someone has ID. It is important for police to recognize disability. I think that a trained disability advocate should be present when someone with ID is questioned. Training and education around disability needs to be a part of education for lawyers, police and those in the courts. The risk of false confession with ID people is high. It is not in the interest of justice to get a false confession. Finding the right perpetrator should be the goal.

Now that ID people are largely a part of society, and no longer kept in institutions at very high rates, training and education around these community members is important. High rates of imprisonment for ID shows that there is a problem. ID people are not more likely to commit crimes. They are more likely to become embroiled in crime and then trapped in the criminal justice system and in prisons. For true justice to be meted out, we need to look at the reasons that ID people are in prison at such high rates, and learn what we can do about it.

The Story of Raylee Jolynn Browning: A Homeschool Homicide and Torture Case

A very tragic case coming out of West Virginia, which involves the hallmarks of a child homeschool torture and homicide case, is that of child victim Raylee Jolynn Browning, age 8.

Raylee was born in 2010, and it does not appear that her biological mother, Janice Wriston, was very involved in her life, something we see a lot in these cases, and discussed in the findings of the Knox Child Torture report. I frequently refer to this report when researching and writing about homeschool torture cases, and it is one of the very few such reports that have been done on child torture. The patterns of child torture cases are evident in all of the homeschool cases I have written about, and are also found in the Raylee Browning murder.

As an infant, Raylee went to live with her biological father, Marty Browning. The abuse started right away, with Raylee being seen for injuries at the hospital in 2011. It is unclear at this time if doctors ever contacted child protective services when Raylee was brought in with injuries. Marty’s girlfriend, Julie Dawn Titchenelle, and her sister, Sherie Titchenelle, were also involved in the girl’s life, and they all lived together in a home with Julie’s three biological children. For a while, Raylee was sent to public school.

Raylee Jolynn Browning. [image of very young child, maybe age three, in the kitchen. She has blonde hair in pigtails.]

Raylee was likely a victim of medical child abuse, and was on 7 medications for autism and mood disorders. Authorities and doctors involved in the case believe these medications were unnecessary, and it is unclear if Raylee had autism and psychiatric disabilities or not. It does not appear that she ever got a real diagnosis. It is more likely that her caretakers used these medications to subdue and control her, and also so they could blame a disability for reasons why Raylee was injured, saying she had done it to herself.

As we saw with the Erica Parsons case, and as it also outlines in the Knox report, it is not uncommon for the non-biological child to be abused by the mother figure in the house. Women feature prominently in child torture cases. It is also common that the mother figure encouraged everyone else to abuse the child, singling the child out for torture, but not torturing the biological children. In this case, Sherie was the main caretaker of the four children in the household, and she singled out Raylee because she was not one of Julie’s biological children. Another child, who was one of Julie’s biological children, known only as V., was also singled out for abuse because she was of mixed race. Race is absolutely a reason that children are victimized, which we saw in the case of the Hart children. However, it appears that Raylee bore the brunt of the abuse in the house.

From left, clockwise: Raylee, Dad Marty, Sherie, Julie.

Teachers at Raylee’s school noticed that she was bruised and hungry, and called Child Protective Services multiple times. Leading up to her death, Raylee was admitted to the hospital on several occasions. Raylee’s caretakers reported to doctors that she had a history of self-harm, and that was the explanation for her injuries. They tried to blame her so-called disabilities for the injuries Raylee sustained, including a broken femur, a common child abuse injury. It is not clear at this time if the hospital contacted CPS. However, doctors can usually tell if an injury is because of child abuse.

According to Raylee’s sister, V., Raylee was instructed by Sherie to lie to CPS and Raylee complied because she was scared. After a while, V. reported, Sherie pulled Raylee out of public school to homeschool her because she could not think of any more lies to explain Raylee’s condition. Pulling a child out of public school to cover abuse is very common, as is isolating the children from everything in their lives. In this case, Raylee was not even allowed to talk to the other children. According to the Knox study of child torture victims:

This social isolation typically involved preventing the child from attending school or daycare. Twenty-nine percent of school-age children were not allowed
to attend school; two children, though previous enrolled, were dis-enrolled by their caregiver and received no further schooling. An additional 47 % who had been enrolled in school were removed under the auspice of “homeschooling.” This “homeschooling” appears to have been designed to further isolate the child and typically occurred after closure of a previously opened CPS case. Review of these cases found no true educational efforts were provided to the homeschooled children. Their isolation was accompanied by an escalation of physically abusive events.

Homeschool was just more opportunity for Sherie to abuse Raylee, making her stand in place for hours and walk through the hallways of the house, instead of providing her with an education. Apparently, the other children in the house were actually homeschooled, and Sherie was part of a homeschool group. While the other children and the group were educated in the home, Raylee was made to either stand or walk the halls for hours. It does not appear that anyone from the homeschool group reported this.

From left: Marty and Julie, who was a beauty queen. Right: Raylee.

The abuse of Raylee escalated to her death after she was withdrawn from public school, because now Sherie was free to abuse Raylee as much as she wanted without anyone noticing or reporting it.

Raylee and Sherie shared a bedroom, where Raylee was forced to wear a diaper, since she would often wet the bed (not surprising considering the abuse) and sleep on the floor. She was beaten with objects, according to V., a belt, a spoon and metal objects were used. A claw hammer was found in the shared bedroom, as was a sex toy.

Raylee was clearly hungry, and had asked cafeteria workers at her school for extra food. This is another pattern of child torture cases; it is very common that children are food and fluid restricted. In almost every case on this blog, children were starved. The Knox report says that 89% of the child victims they studied did not have enough to eat and 79% did not have enough to drink.

Not having enough to drink was what ultimately killed Raylee. Sherie decided to punish Raylee by refusing to allow her to drink any liquid for three days. V. reported that Raylee was so thirsty that she drank from the toilet. Shortly afterwards, Raylee went septic. This occurred around Christmas of 2018. Raylee became unconscious, and Sherie once again brought her to the hospital, where Raylee passed away. Doctors said that Raylee had been severally unwell for some time, a condition that should have been readily apparent to her caretakers, who neglected to seek medical help for her until the last minute. Medical staff called authorities to report that Raylee was in cardiac arrest, and her body was covered in bruises and lacerations. Sherie tried to explain Raylee’s condition by blaming her medications, then saying she fell in the shower, which is a very common “reason” given by child abusers to explain why a child is injured.

Police went to the home to interview the adults and everyone gave a conflicting story as to why Raylee had died and why she was covered in injuries. This caused police to become suspicious, and to start an investigation. During a search of the home, police found the hammer and sex toy in the bedroom Raylee shared with Sherie. Sherie could not explain why either of those two objects were in the room.

The medical examiner reported that Raylee passed away from an infection likely caused by drinking the toilet water, which led to sepsis. The medical examiner also reported that Raylee had a torn rectum. She was covered in bruises, burns, and lacerations.

In December 2019, all three adults were charged in Raylee’s death. Sherie, age 35, was arrested on one count each for death of a child by parent, guardian, or custodian, and child neglect causing death, both felonies. Julie Titchenelle, age 36, was charged with the same thing, and so was Marty, age 34. Julie at the time was the reigning Miss Oak Leaf Festival. Her title has since been stripped.

Sherie Titchenelle [image of white woman with long brown hair, mug-shot style, against a concrete wall]

According to the Register-Herald, “An investigation by Oak Hill Police Department Detective Sgt. James Pack was reportedly hampered by a lack of cooperation from West Virginia Department of Health and Human Resources Child Protective Services, which had an open file on Raylee at the time she died. Oak Hill Police Department Chief Mike Whisman on Dec. 11 verified a Dec. 10 report by a Fayette official that CPS had not speedily submitted to police requests for CPS records on Raylee. When OHPD received Raylee’s files in November, officials said, they were not complete.”

This would explain why it is currently not entirely understood how CPS was involved, but it seems pretty clear that they dropped the ball with Raylee. Marty, Sherie, and Julie have all been released on bond.

Raylee, a blonde little girl with a big smile and blue eyes.

Raylee’s Law

Unsurprisingly, this case sent ripples through the West Virginia community and appalled legislators. A new law is being sponsored by Del. Shawn Fluharty, D-Ohio, known as Raylee’s Law, or HB 4440. This law would prevent people who have an open CPS case from homeschooling, and also prevent people who have a criminal record of violence or domestic violence from homeschooling.

The Montgomery Herald reports: “State law does not require home-school educators to report suspected child abuse or neglect. By contrast, teachers and public school administrators are mandatory reporters of child abuse. They face a criminal misdemeanor conviction of up to 90 days in jail and up to a $5,000 fine for failing to report child abuse or neglect. Those who fail to report a sexual assault face six months in jail and up to $10,000 in fines.”

And also: “State law does not require a home-school education cooperative or association to verify that member students were legally withdrawn from public school.”

While there are many more areas that need to be regulated when it comes to homeschools, this law is a good start for the state of West Virginia, and for other states to look to as an example. It is far too easy to pull a child out of public school, away from mandated reporters, and keep them isolated in the home, where abuse often escalates to homicide.

You can track the progress of Raylee’s law here: http://www.wvlegislature.gov/Bill_Status/bills_history.cfm?INPUT=4440&year=2020&sessiontype=RS

Please take time to call or email the West Virginia House to show your support: http://www.wvlegislature.gov/House/roster.cfm

We must be sure to honor Raylee’s memory and protect children in similar circumstances.

 

Mercer County Child Homeschool Homicide Case Involved Starvation

One of the things that I often see in the homeschool homicide cases I write about is starvation. Starvation is a common tool of child torture. In just about every case on this blog, the children were starved. Erica Parsons was malnourished, underweight and fed dog food. Hana Alemu was underweight, forced to eat outside in the backyard in bad weather, and was given purposely disgusting food which had been altered to make it distasteful. Mary Crocker was starved and also given distasteful food that would be hard to eat, such as food covered in vinegar. When children are starved, they often are also fluid restricted. Denying children water is another torture tactic. The 13 Turpin children were all starved for many years, resulting in growth stunting that was so severe, law enforcement thought a 27-year-old was ten, as well as thinking the other adult children found in the home were minors. Children isolated in homeschools and kept away from other people undergo the worst of starvation cases. Often, no one knows about it until after the child is dead.

Mercer County, Pennsylvania

A recent homeschool homicide case comes out of Mercer County, Pennsylvania, as law enforcement arrested 33-year-old Antonio Juan Gonzalez and 29-year-old Paul Bacorn, a “family friend” who lived on the property, in the death of Antonio’s 14-year-old son. The child, Antonio Juan Gonzalez, Jr., weighed just 70 pounds. The child was found dead on October 24th, 2019, in the family home on the 500 block of District Road in rural Delaware Township, after his father called 911.  The child was not breathing and was unresponsive. EMS pronounced him dead at the scene. The boy was homeschooled, and was taking online classes.

Police reported that the conditions of the home were “squalid” and unsuitable for children. Photographs from the outside of the crime scene show broken windows, debris, and a small, hazardous looking porch with a padlocked refrigerator on it. The refrigerator was padlocked to restrict food access to the children. A four-year-old girl was also living at the house, but was reportedly in good health. She has since been placed in custody of child protective services. The children’s mother has been deceased for many years.

The squalid home where the body was found. [image of small brown modular home, crooked, not sitting on a solid foundation, with broken window and cheaply constructed wood board porch with junk stacked on it.]

Antonio Jr. died from hypovolemic shock, which occurs when a person loses more than one-fifth of their body fluid and the heart can no longer pump blood throughout the body. He had a skull fracture and a severe injury under his chin. Hypovolemic shock occurred as a result of blunt force trauma, although it is believed that starvation also contributed to his death. Mercer County Coroner John A. Libonati reported that the child was significantly malnourished and his condition exacerbated the affects of the injury he received to his skull. Police observed that Antonio Jr. was noticeably underweight, with protruding cheekbones and visible joints, and had “significant bruising”. The Coroner said it is the worst case he has seen in 36 years.

Mercer County Coroner John Libonati  [image of man in brown suit, with brown dotted tie and glasses]

Antonio Gonzalez Sr. and Paul Bacorn have both been charged with criminal homicide, child abuse, aggravated assault, endangering the welfare of a child, concealing the death of a child, assault, reckless endangerment, tampering with evidence and conspiracy to commit the crimes. They are both being held without bail in the Mercer County jail.

From WKBN27 News: “He appeared to be of normal height. He was about 70 pounds. He was emaciated,” said Mercer County District Attorney Pete Acker. “Looked like a concentration camp victim. You could count every one of his ribs. They were protruding and his legs were like pencils.”

When initially asked about what happened, Antonio Sr. gave police a few different stories, first saying the boy had fallen and hit his head that day, after going outside on a break from online classes. He later changed his story to say that the boy had hit his head the night before. Antonio said he tried to revive his son by pouring a bucket of water on him, but his son was unresponsive. Two hours after pouring the water on him, Antonio said that his son was breathing, but still unresponsive. He delayed calling 911 for hours after his son was rendered unconscious. By the time EMS arrived, the child was dead.  Bacorn and Gonzalez were arrested at the scene.

Juan Gonzalez, left, and Paul Bacorn, right; mugshot, in orange prison outfits

Once in custody, Gonzalez and Bacorn admitted to police that they abused Antonio Jr. quite frequently, including making him stand with his arms in the air for hours, denying him food for days in a row, spraying him with cold water from the garden hose (cold water baths are a common child torture method), and physically abusing him. A preliminary arraignment in Common Pleas Court will occur on February 11th, 2020, in which both men will appear. I will keep readers updated on this case by adding to this blog.

Patterns

Starvation that is so severe it results in death, where the victim looked like “a concentration camp victim” can only occur if the victim has been kept away from others and isolated for a significant amount of time. While there are certainly cases of hungry children going to public school and not being noticed, the most severe starvation cases occur in homeschools. If the child in the above case had been allowed to be around other people at all, someone would have noticed that he was severally emaciated. According to Gonzalez Sr., he could not stand on his own. He was also visibly bruised. Since he was homeschooled and isolated in a rural area with no one around, there was no one to notice he was abused and starving, and no one to make a report to police or child protective services.

Pennsylvania does have more stringent requirements for homeschool than many other states, but this child was still able to go unnoticed for some time, and it is hard to believe that he was passing standardized tests or anything else that the state required. Antonio Sr. would log his son into school so it would appear he was online. There was no oversight by the state to make sure Antonio was in good health and actually being educated.

It is also unclear how long Antonio Jr. was homeschooled for, if he had ever been in public school, and how long he was starved for. Since he was of a typical height for his age, he did not undergo growth stunting. It is likely that the starvation occurred in more recent years. Adolescent children often become victims of escalating abuse, which is so severe it results in homicide. In this blog, all of the homicide victims I have written about were adolescents.

As for the role of disability, when children are subjected to starvation, neglect, and abuse, it can cause disabilities. This type of severe treatment can lead to lifelong physical, emotional, and intellectual disabilities and also psychiatric disabilities, if a child survives the situation and is able to grow up. Starvation and neglect have different affects on children of different ages. If very young children are subjected to starvation, their development is severally delayed. If growth stunting occurs, it can never be reversed. Starving and abusing a child will also seriously interfere with their capacity to be educated. If a very young child is starving, they will not be ready for school at all. When someone like the child in the above case is starved later in life, they will not be able to focus on school, either.

There are many cases of homeschool related starvation that come across my desk every month. It is a common tool of torture. This is just one of many. It is another reason for better regulation and requirements around homeschool, and also for understanding homeschool as a disability issue in more ways than one. Children who are born with a disability are victimized, and victimization creates disability. In many cases, a child is disabled, and the torture exacerbates existing disability and also creates more disability, none of which are being treated in these homeschool cases, which leads to a heightened level of suffering. If the child is rescued from the home, they are going to need disability supports and services. For the child in the above case, he never got to grow up. This case needs to cause a spotlight to be turned on Pennsylvania homeschool law, and to advance understanding of the types of abuse that occur in a homeschool torture situation.

 

 

 

 

 

 

“Mental Illness” Is Not Why People Kill

A question that frequently comes up for me when discussing my work with others is whether or not the perpetrators in the homeschool homicide cases I write about are “mentally ill.” The nature of the crimes is often so heinous, it is beyond the scope of comprehension. Most people search for some kind of answer as to why a person would torture and murder an innocent child, and it is not untoward to wonder about it. “Something has got to be wrong with them,” people say. And often what people think is wrong is psychiatric disability. The perpetrator must be mentally ill. A “normal” person would not do this.

Yes, there is something wrong with people who torture and murder children. However, it is not psychiatric disability, except in very rare cases. In order to understand this, we need to first look at what psychiatric disability means.

Psychiatric Disability and Legal Insanity 

I use the term psychiatric disability. Others may say “mental illness”, “insanity”, “crazy”, and so on. Psychiatric disability is a better term to use because it brings to mind the idea that the issue is 1. psychiatric, or medical/neurological, and 2. a disability, which is privy to disability rights law and accommodations. It is not a moral failing, it is not an idea, based in the Victorian era, of “derangement”, or any other stereotypes of insanity that have survived over the centuries. Terms like derangement and crazy are meaningless when really examined. What does it mean to be “crazy”? There are a lot of potential answers that someone might come up with, depending on what that word means to them. It is a blanket word that is applied to many situations. It is often a word applied to situations/people that are chaotic and do not make sense. However, that does not describe psychiatric disability.

Psychiatric disabilities are diagnosed conditions such as bipolar, schizophrenia, borderline personality disorder, anxiety, Post Traumatic Stress Disorder (PTSD), depression, and so on. These are found in the Diagnostic and Statistical Manual of Mental Disorders. While there are theories about what psychiatric disability really is, and whether or not it really exists, or if it is a symptom of larger society, that is beyond the scope of this particular post.

Psychiatric disability is not a vague thing that fits under the umbrella of “crazy”. These are diagnosable issues that manifest in particular ways and are generally treatable with medicine and therapy. So while someone like Casey Parsons, who starved, tortured, and murdered her adopted daughter, Erica, might have issues, she is sane. In the legal system, the definition of “sane” becomes its own area. There is a set of requirements that a person must meet to be considered not guilty by reason of insanity. Casey Parsons did not meet these requirements and the possibility of insanity was not raised by the defense, either. It is very hard to be found not guilty by reason of insanity. A person can have psychiatric disability and not meet the legal definition of insanity.

Mugshots of Sandy Parsons (left), adopted father of Erica Parsons, and Casey Parsons (right). Both are wearing orange jailhouse jumpsuits.

An example of someone with psychiatric disability who was sane was Jeffrey Dahmer. Jeffrey did have diagnosed psychiatric disabilities, but the court found that he was aware that what he was doing was wrong. The psychiatric disabilities were not the reason for his behavior. Those disabilities did not explain why he was a serial killer. Why someone becomes a serial killer is not fully understood. It is a complex area, but all serial killers have things in common that fit a criminal profile. Certain serial killers may keep a trophy from their victims, for example. A trophy can be an article of their clothing, part of the victim’s body, or something along those lines.

Jeffrey Dahmer in court.

Criminal Motives and Thinking 

It is important to understand that Casey Parsons, like Jeffrey Dahmer, was aware of what she was doing, knew it was wrong, and did it anyway for her own reasons and for her own gratification. From what I have read of the testimony from the case, Casey Parsons did not like Erica because the little girl reminded her of Carolyn Parsons, Erica’s biological mother, whom Casey did not like. Another child victim I have written about is Hana Alemu. Her adoptive parents, in particular her mother, did not like her because she was older than she was “supposed” to be when she arrived in the U.S. from Ethiopia, and was disabled. Disability and other marginalized identities can be a reason that people are victimized. Disability is seen by many as a defect, and it is believe that the disabled person is “less than” other humans. This can overlap into things like race, country of origin, and gender/sexuality.

Ethiopian adoptee, Hana Alemu.

Each case on this blog is unique and complex, but psychiatric disability is not the reason that any of the parents I have written about tortured and murdered their children. Their behavior is beyond the scope of the average person’s comprehension, and we may never fully understand. In the cases I write about, as regular readers know, there are many patterns in common. The children tend to be adopted or have been placed in an informal family arrangement, are disabled, are subject to extreme isolation and kept out of school, are often around age 13-15, and may be a person of color that is not the same race as the rest of the family. The adoptive or biological mother or stepmother often is the main source of the torture, with the father’s help and apathy another factor.

One way to tell that these parents knew what they were doing is their efforts to cover their abusive behavior by pulling the child out of public school, or never allowing them to go to public school in the first place. If the child was seen by other adults on a regular basis, especially adults like teachers and school staff, the abuse would very likely be recognized. These parents wanted to continue abusing their children. They did not want to stop, and they did not want to be found out because they knew they would be in legal trouble. They knew what they were doing was illegal and wrong, but this behavior was gratifying to them in some way. Parents like the Harts went to great lengths to avoid being caught, such as pulling the children out of school after a Department of Human Services investigation, and moving the children to another state. The Harts intimidated the children to keep them from telling people about their abuse. They kept the children weak by starving them. All of the parents kept their children isolated and without ability to communicate, denying them disability accommodations which would help them be independent. These were calculated moves on the parts of these parents.

The Difference is Crucial 

That is why it is important not to look at psychiatric disability as an explanation for the behavior. The parents knew what they were doing, did not care that it was wrong, were aware that it was illegal, and went to great lengths to cover it up and avoid detection and justice, such as hiding the body. If we understand that about these types of victimizers, that is a better understanding of their criminal minds than ascribing their actions to a vague “mental illness”. It is only then that we can really begin to understand the reasons behind this criminal behavior, and how to recognize and prevent it.

It is also important to be aware of the reality of being a disabled person, and how disabled people are victimized at much higher numbers than able bodied people. There are reasons for this, and they are criminal reasons. Disabled people can be more vulnerable and make better victims. Disabled people can cause frustration in parents and caregivers who have biased ideas about them. Disabled people are seen as subhuman. Disabled people are often abandoned by their families and communities. An abuser seeking gratification that may be sexual or sadistic will take that out on a disabled victim, especially a child, because that victim is less likely to tell anyone, or be able to communicate or fight back. A disabled victim may be in an institution, a foster home, a homeschool, or any number of other isolated places. These are the reasons that these crimes happen. Not because the perpetrator was mentally ill. Not because the perpetrator was legally insane. Not because the perpetrator had any kind of disability, but because the perpetrator enjoyed and was gratified in some way by their behavior. When we recognize this, we can better understand the reality of these crimes, and what we should be doing to elevate the lives of disabled people and protect disabled children.

 

 

 

Capitalism, Cultural Identity, Addiction, and Disability

For many years I was very troubled. I drank too much, I was taking a lot of prescribed benzodiazaprenes (klonipin), and I was having serious mental health problems. I had been pathologized by doctors. I was hallucinating and having delusions. I was committed to a psychiatric ward against my will. I was depressed and hopeless.

Effective mental health treatment with medication and Deaf identity-focused therapy helped, but a larger part of the picture for me, which brought lasting and sustainable peace, was finding my culture. Discovering the cultural identities that I have within myself that have been kept from me, that I did not even know really existed, except in some vague way. For many marginalized people, particularly in western society like we have in the U.S., our cultures have been kept from us, our people have been assimilated into white supremacy, our language denied to us, and we have been shamed because we do not fit into western capitalist systems, even though capitalist systems were designed to exclude us in the first place.

When you have a marginalized cultural identity there is stigma around it. There is shame. People will try to put your culture down, keep it from you, destroy it, tell you it is bad, tell you that you do not need it, tease you, bully you, make fun of you, hurt you, murder you. People who do these things are often not in touch with a culture at all, particularly not a marginalized one, anyway, and do not understand the significance it plays in making a person whole, and do not understand the damage that results from being denied who you are. This damage resonates through all of society.

What is culture? Cultural identities can be many things, and they can overlap, which is where the term intersectionality comes in. You may have more than one cultural identity. Cultural identity can be based on race, language, ethnicity, religion, sexual orientation/gender, disability, and country of origin, among other things. Cultural identity can be any combination of those things. Many people do not realize that disability is a culture, and that Deafness is a culture. Cultures have shared things in common, like music, food, dance, art, literature, experiences, beliefs, behavior, and more. For many years now in modern U.S. society, disability and Deafness have been positioned by the mainstream as a defect. A medical problem. A shame. Something bad that needs to be fixed. When you are disabled, it is very hard to get away from this belief system. It is foisted on you from the time you first experience disability, whether you were born with it, or experienced it later in life. I am including Deafness, mental health and addiction in this definition of disability. However, that is just for brevity. Deaf people do not consider ourselves disabled. We have a cultural and linguistic difference. But Deaf people are a part of larger disability culture.

I have written before about how Deaf Culture was denied to me growing up, and how I did not even know it existed, and how this affected me, and severally affected my mental health for many years. Sadly, I did not really connect with Deaf Culture until I was in my 30’s, after a brief stint with it as a teenager. When I first learned sign language at age 14, it was so liberating. It changed my world. Being taught sign by a Deaf teacher who welcomed me into Deaf Culture was absolutely incredible. It began to change who I was and how I thought about myself. I then went to another high school with a Deaf program and other Deaf students. However, that experience was short lived, as I left high school, and entered the mainstream world, which views Deafness as a defect and does not want to accommodate it. I fell back into isolation, hopelessness, and depression, and struggled with addiction. I did not even realize how much this was connected to being kept from my culture and my identity.

People often don’t even intentionally try to keep you from your culture. Things are just set up that way, and it is overpowering to maintain cultural identity in a white supremacist capitalist system. Making money and going to work become such a priority in your life, and capitalism begins to define people’s values. Capitalism rules everything in the U.S., and does so much that people are not even aware of how it has affected their value system, beliefs, and behavior. Disabled people often cannot participate in capitalism, which completely depends on exploiting your body’s physical and mental capabilities to the fullest extent possible. All marginalized people are kept down, and historically have been, within capitalist systems. The reason I was not given access at work for so long is because it is expensive. Hoarding as much wealth as possible is the goal of the bosses, and needing an accommodation that costs money, like sign language interpreters, is not going to be part of that equation. However I needed to make money and be employed, or I would be homeless. And for many people like me, they do become homeless.

Another part of my identity that has been destroyed in many ways and kept from me is my identity as a Jewish person. My family were refugees from Russia in the early 20th C., and came to the Cleveland and Youngstown, Ohio, area, and also to Pittsburgh, by way of the Bronx and Brooklyn. My great grandfather Abraham Smulovitz was sent to Youngstown at age 12 to live with his uncle’s family, leaving behind his parents and family in Hungary, where as far as I know, everyone was killed. Abraham was sent to the U.S. so he could survive and grow up. My great grandmother who married Abraham, Belle Leibermann, was from a shtetl in Russia, known as Plyskov. A shtetl is a traditional Jewish village. Everyone there was Jewish, as far as I know, and they had all moved to that area to escape persecution. It was a desolate area. But they were found anyway. Plyskov was destroyed and everyone was murdered. It no longer exists. I cannot go there, I cannot ever visit it. It is gone. So much is lost that I will never know and never be able to find out. Luckily, my great grandmother and her family were able to escape the area and survive. For many Jewish people, our families were from Russia and Eastern Europe, and the towns and cities they lived in completely destroyed and their presence wiped out, not just in WW II, but for centuries leading up to it.

When immigrants and refugees come to America, over the generations, people assimilate. The old world is left behind. And for some, that is fine. But for me, understanding that old world of tradition, music, food, dance, language, and so on, is very important. The other side of my family is Irish, and I grew up in an Irish immigrant area, where I was much more in touch with that part of my culture. That has been enriching for me and I am lucky to have been raised to be in touch and surrounded by that. That culture was not denied to me, or hidden from me, or a mystery.

These days I have been studying Judaism, the religion, the culture, the music, the history. You think you may have a good idea of a culture, but you really do not until you delve into it and study it. And when you really delve into it, you learn so much about who you are. Part of this is discovering your community. For me this has been Rabbi Joel at Hillel, his wife Rachael, and Rabbi Yael. I have worked with my rabbi to have accessible Jewish services, interpreted for me in sign language by qualified interpreters who know how to do a religious service that is mostly in Hebrew. This has been very enriching and important to my growth as a human, my health, and my happiness. I have felt a sense of peace, calm, enrichment,and tranquility since I have started to get to know this part of myself. The intersection of Deafness and being Jewish is also interesting, because my Deafness has kept me from my religion before, since services are so based on talking and hearing. Now I have access to this part of my culture.

Another thing that is good about finding your culture as a marginalized person is learning about how many cultures are not at all based on capitalism. Capitalism is not the central core from which the society has sprung, and capitalism is not what the value system is based on. Deaf culture and traditional Jewish culture are not capitalist. There is not a focus on monetizing everything. This changes many things in a culture and belief system, in particular, how bodies are viewed.

There are reasons our marginalized cultures have been kept from us. They threaten white supremacy, they threaten capitalism. They threaten those who are in power by the very nature of their existence, since they are so different, and their value systems so opposite the mainstream. This is why it is so important to know who you really are, and what has been done to your people. It is important to learn about your heritage, to claim your identity, whatever it may be, to take it back from those who have oppressed you.

Our society in the U.S. today is sick. We are in the midst of a terrible drug epidemic. There is widespread homelessness. There is an associated housing crisis. Wages are very low. Health care out of reach. Life expectancy for certain groups is declining for the first time since records were kept. People are isolated, ashamed, impoverished. People do not know who they are, they are not proud of themselves. People become depressed when they cannot participate in and benefit from capitalism any longer. They have based their belief system on capitalism so much, and they blame themselves, and society blames them too, for not benefiting from it. People become so depressed from this that they turn to addiction and suicide or homicide. It causes problems with mental health to feel this way.

This is why social models are so important to understand. The social model of addiction closely parallels the social model of disability. Mainstream culture is sick, mainstream culture is lacking. The world is inaccessible, the world is capitalist. There is much more to life. Community and culture are a big part of it, and so is cultural identity. When I began to learn about the social model of addiction, I was surprised how closely it follows disability theory. With addiction, often comorbid with it is psychiatric disability. I thought about how much better I have gotten with my own mental health since becoming connected to my marginalized identities and my communities. Isolation can really hurt people, and for many years I felt defective and isolated-because I was not in touch with my identities, I was ashamed of my mental health issues, I was ashamed of my hearing loss. Community and culture are vital things for human happiness.

For more about the social model of addiction, watch these captioned videos. Thank you to Dr. Elizabeth Taets Von Amerongen and PhD student Austin Brown at the Disability Cultural Center at Syracuse University for introducing me to the social model of addiction, its connection to disability theory, the work of Dr. Bruce Alexander, and his colleagues. Dr. Bruce Alexander will be visiting Syracuse University this November, 2019, from the 11th to the 13th, where we will have live captioned (CART), ASL translated, accessible presentations with him.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Accessing Mental Health Services for the Deaf: Linguistic and Cultural Barriers to Treatment, and Arkansas HB1471

Governor Asa Hutchinson of Arkansas signs HB1471 into law. [image of people surrounding the governor, who is seated at a table looking at a document. Everyone is clapping.]

When I began my undergraduate education in New York City at Hunter College, I started to experience hallucinations and other mental health issues. I was 24, and it had been going on for a few years, but was getting very bad. I was frightened and went to see a counselor at Hunter. She referred me to the League for the Hard of Hearing, a one-hundred year old organization (now the Center for Hearing and Communication), on Broadway and Wall in Manhattan. There, I saw a psychiatrist, a social worker, and a psychologist. The League also had audiology, a store to buy hearing aid batteries and other related things, and a visiting ENT. There were a few different psychologists available, and a director of mental health that you could also talk to. Sometimes I would come talk to him if no one else was available and I was having a mental health crisis. I went to the League every week for 5 years. I received very good treatment from my therapist and improved significantly. I was diagnosed with psychiatric disability and treated with medication. The social worker helped me to access and stay on Medicaid, which covered my treatment. She was fluent in sign language and had a Deaf brother. She would go with me to Medicaid appointments. I will forever be grateful to the team I had at the League.

Telephone Barriers

It is estimated that 80 to 90 percent of Deaf and hard of hearing people who have psychiatric disability are not receiving treatment. There are severe barriers to accessing mental health treatment for the Deaf, because every area does not have an organization like the League for the Hard of Hearing. What the average Deaf person will experience in accessing mental health treatment is a serious lack of availability of any treatment centers or options that are accessible to them or who understand them. Even picking up the phone and making that first call- this can be hard for Deaf people who may not have access to the necessary technology one needs to make calls. In the modern world, many people do not have land-lines to use a TTY. Deaf people text and do message chats using a cell phone. Calling a medical office frequently results in having to listen to an automated menu and voice prompts. When I take my hearing aids out to use the phone, I can no longer hear myself speak. When an automated menu requires me to speak, it often cannot understand me. Automated menus are not designed with Deaf people in mind and are a huge barrier to accessing treatment. I do not always have a sign language interpreter available whenever I need to make a call, either. Many hearing people think that my interpreter is permanently sewn to my side and goes everywhere I do. That is not how this works. My interpreter is assigned to be my interpreter at work and in school. This does not include assisting me in making personal calls. That is not my interpreter’s job. Some hearing people might think, well they should just do that anyway. And my interpreter has, but there are professional and ethical boundaries that interpreters must follow or they could lose their jobs. It would be great if medical and mental health providers would have a live-chat option on their website that connects to an actual person, not a robot, who works at that office. This would not only help Deaf people, but many people with and without disabilities who for whatever reason cannot use the phone. For clinicians to understand this, there needs to be statewide education and requirements so that Deaf people’s rights to access are being upheld.

Language Barriers

A serious issue for Deaf people is the language barrier. Most hearing people know little to nothing about sign language whatsoever. It is truly amazing the things that I have heard from hearing professionals who work with disabled and Deaf people. The lack of education is appalling. It is hard to even discuss this issue without offering a primer in sign language, since hardly any hearing person understands it, and many make erroneous assumptions. I have written about sign language before, here.  Without recapping that entire article, let me again say that there are different kinds of sign language. One issue is that the clinic requesting an interpreter to come in and interpret probably has no idea that there are different kinds of sign. They have no idea the level of skill of the interpreter they are getting, and if that interpreter is skilled at using the type of sign the patient needs. That is why education for the entire office is a big help. Some Deaf people, like me, use more English-based sign. I grew up oral, which means I was taught to speak and to rely on my hearing aids. This is not ideal, but many Deaf people are raised this way. I learned sign language at age 14. Because my first language was English, I use a more English-based sign, and my interpreters know this. American Sign Language is not word for word translation of English. It is another language.

Some Deaf people had a different experience. They grew up using sign. They may have been born into a Deaf family and community. People like this often use a more “cultural ASL” style of sign. This is not English-language based at all. A Deaf person like this needs an interpreter who understands that they need to use more ASL style of signing, as it is called. If a clinician is serious about treating a Deaf patient effectively, this component is crucial. It is important to think of Deaf people as bi-lingual or multi-lingual. They use a different language, and spoken and written English may not be their first language or their strong suit, just like anyone who uses another language, and languages have dialects.

Another problem that can arise in a clinical setting is having a Deaf patient who does not have language use due to being deprived and isolated their whole lives from effective communication. This especially can happen to Deaf people who are intellectually or developmentally disabled. It is not an uncommon experience among the Deaf to be deprived of communication, whether that is sign, spoken language, or written language. This can cause clinicians to misdiagnose these patients with psychosis or another issue, because the way that person communicates mimics word patterns of psychosis.

As an example, I had a friend in high school who was deaf and also had cerebral palsy, and used a wheelchair. She was given up for adoption and went to a group home when she was very young. In the group home, she was just left in the corner. No one knew she was Deaf until she was 13 years old. No one knew how to communicate with her until she was adopted by a couple fluent in sign and put into a school and given interpreters in the classroom. Everyone just thought she was intellectually disabled and they did not try to communicate with her (which says a lot about how people think of the intellectually disabled). This is the kind of thing that can happen to Deaf people.

When Deaf children are not given access to the type of communication they need, this can lead to a lack of socialization. It is not uncommon for disabled people in general to not be talked to at all about sex, which is a typical part of human development for everyone. It is important to remember that a Deaf person will not just pick things up. We cannot overhear anything. Deaf and many disabled people need direct, accessible communication. And many able bodied people are uncomfortable with that. So this issue might be why a Deaf patient has been acting out and being inappropriate. When someone has not been communicated with in a language they understand, or if they did not develop much use of language, behavioral problems can result. For this reason, Deaf people can become embroiled in the criminal justice system. This is another area where a Deaf person may come into contact with a mental health professional such as a psychiatrist.

Deaf Culture

Understanding and treating Deaf patients also means learning about Deaf Culture. While language is crucial, culture is another component. Hearing people often are unaware that Deaf Culture exists. When a group of people have a particular experience of life, they have a shared culture. Deaf people have shared culture, language and experiences, even if we grew up in different ways. I may use English-based sign but I still have a shared culture with someone who uses cultural ASL, and I can communicate with them, even though it can be a challenge, depending on the person. There are things about being a Deaf person that make us think differently and experience the world differently than hearing people. An example is that often hearing people are vague, use euphemisms, or dance around the point. In Deaf culture that is considered extremely rude, inaccessible, and offensive.

Another aspect of Deaf culture is that we may have grown up, like disabled people, receiving services from the state, taking the city bus, going to an audiologist and a speech pathologist, wearing hearing aids, and so on. That is a shared experience that able bodied people do not have. There is disability culture, there is Deaf culture, and there is the combination of the two that people experience. I may have a master’s degree and a professional job but I am used to being in spaces with disabled people, many of whom are poor (as I was for many years), receive services (as I have and sometimes still do), rely on medicaid transport (I also do not drive), and other things. When I talk to able bodied people, they are like, why don’t you drive?! When I talk to disabled people, it is not considered strange, it is common. (Although many Deaf people do drive). Understanding disability culture is understanding that people often do not drive, and this is not because they are childish (as I have heard), lazy, or stupid. The point is, I do not have to explain this stuff to other Deaf and disabled people. We just get it.

Creating Infrastructure for Deaf Mental Health Services, the Arkansas Model 

The reality for Deaf people who need mental health treatment in most areas is that nothing exists for them whatsoever, and people who work in the mental health system do not even understand that there is a need to serve Deaf populations. Recently, in my graduate Mental Health Policy class, a professional presenter told me that she attempted to communicate with a Deaf psychiatric inpatient in a hospital during an emergency situation by trying to look up signs on Youtube. This is entirely unacceptable and illegal. This person had a law degree yet she thought this was acceptable and even commendable.

Arkansas is way ahead of the curve and recently, Governor Asa Hutchinson signed into law HB1471, which establishes a bill of rights for Deaf mental health patients and outlines a plan for treating mentally ill Deaf and hard of hearing people in the state of Arkansas. You can read the bill here. I was very impressed with this bill and I think it should be a model for all states. My concerns as a professional and my experiences as a Deaf person are addressed in this bill. The language and cultural barriers, the high need for treatment among Deaf people, and the fact that there is not enough culturally and linguistically appropriate treatment out there for Deaf people are all mentioned.

The bill requires that there are certain standards to be met for those working with Deaf psychiatric populations and establishes that there will be a Deaf Services Coordinator who has a higher degree, to set up a state-wide system of care for Deaf and hard of hearing people. The bill requires that the Coordinator organize an advisory board that INCLUDES people who are Deaf and hard of hearing (at least 51% of the board must be so), sign language interpreters, mental health professionals, and licensed educators for the Deaf. The Coordinator will oversee services being provided to Deaf and hard of hearing people in Arkansas, and be notified when accessible and culturally appropriate services are being denied.

The bill allows a Deaf patient to choose which interpreter works for them, and to refuse to work with any interpreter. If an interpreter cannot immediately be present, something like Video Remote Interpreting (VRI) has to be used. Deaf people know that VRI is not at all optimal, but the bill puts interpretation first, and emphasizes the need for interpreters throughout.

All U.S. states need to look at what Arkansas is doing and follow suit. Disability rights are civil rights, and culturally and linguistically appropriate mental health services are the only way that the disparity in treatment and high levels of untreated mental health issues among Deaf people will be addressed.

 

Horrific Homeschool Homicide Case Changes Laws, But It Is Not Enough

UPDATE: Stepmother Candice Crocker and her mother’s boyfriend Roy Prater, have pleaded guilty to murder. November 3, 2020.

A horrific murder case has come out of Georgia in recent weeks which is changing homeschool law in that state. Finally, law-makers are attempting to create more regulations to protect children who are pulled from public school under suspicious circumstances. From WSAV 3 News:

‘Representatives Bill Hitchens, Jon Burns, and Ron Stephens of Rincon introduced House Bill 530 which would prohibit parents from removing kids from public school to avoid complying with attendance and disciplinary laws.

The Department of Children and Family Services (DFCS) would also be notified if a child is withdrawn from school without notification or stops attending school for an extended period or cannot be located.  Currently, parents are only required to give notice once a year with the student’s information.

Stephens says the bill was amended Wednesday to protect homeschoolers. He says the purpose is “If there is any indication of a child in the school that has had a past history of abuse then it ought to be notified through the school system that the Department of Children and Family Services ought to go investigate it. And these two kids in Guyton fell through the cracks clearly and all we’re trying to do is remedy that.”‘

In many of the homeschool homicide cases in this blog, children were pulled from public school to be homeschooled, which was easy for parents to do, because of little to no regulation around homeschooling. Even parents with Department of Children and Family Services (DCFS) or Child Protective Services (CPS) cases have been able to pull their children from school in order to continue and escalate abuse at home without being found out.

However, in many of the most horrific child abuse and homicide cases, DCFS was already aware of the abuse before the homicide occurred.

Elwyn Crocker 

Elwyn Crocker mugshot

Elwyn Crocker fathered three children with two different women. The children are Mary, Elwyn Jr., and James. Elwyn was investigated in South Carolina in 2008 for assaulting the mother of one of his children, Rebecca Grantham Self. Rebecca and Elwyn are the parents of James, born in 2007. In 2008, Rebecca told police that Elwyn grabbed her by the throat, slammed her into a wall, and also hurt baby James, after Elwyn flew into a rage. James has cerebral palsy. At the time, children Mary and Elwyn Jr. were living with the couple. Mary and Elwyn share the same mother, who so far has been unable to be reached for comment in this case, and is reportedly homeless. Self was later convicted of assaulting Crocker. Crocker was never charged, and the Department of Social Services gave him James to take care of after the couple split up.

Later, Elwyn married a woman named Candice, and moved to Georgia with the three children, settling in a trailer park in Rincon. Police and the Department of Children and Family Services were called many times in the years after Elwyn was investigated for assaulting Rebecca Self, this time about his new family with Candice.

In 2012 and 2013, records show that DCFS investigated Elwyn and Candice for child abuse, and the couple were required to take parenting classes due to their abusing Elwyn Jr. Candice’s mother Kim Wright and uncle Mark Wright began to hang around the trailer, and neighbors report that family life noticeably deteriorated as a result.

Things evidently got even worse when Elwyn and Candice moved, along with the children, into a trailer in Guyton that Kim Wright shared with her son, Tony Wright, and her boyfriend, Roy Anthony Prater.

James, Mary and Elwyn Crocker, Jr. 

Mary and Elwyn, Jr. school phtos

On March 16th, 2017, a neighbor of Elwyn Jr.’s reported to a counselor that she had seen him being beaten by his grandmother, Kim Wright, with a belt for more than an hour, about a year prior, in 2016. She came forward to talk about it after seeing a presentation at school about child abuse. DCFS were notified but declined to investigate the case, saying that it had happened a year ago, even though they were aware of the 2012 and 2013 incidents involving Elwyn Jr. It is quite possible that Elwyn was already dead by the time his classmate reported the abuse and DCFS was again notified. He had not been seen since November, 2016.

Police had also been called multiple times to the Guyton trailer due to constant fighting between the adults who lived in the home. Child welfare agencies looked into the situation during these times.

At some point, the Crocker and Wright families began to keep Mary, age 14, in a dog kennel in the kitchen, zip tied and naked. She was starved and given purposely distasteful food with vinegar in it. She became so stiff from being kept in the cage that the family would take her out and strap her to a ladder in order for her body to stretch. They also tased and physically abused her.

The abuse of Elwyn Jr. and Mary escalated to homicide, although how exactly they were killed is still not known.

Crocker/Wright trailer on Rosebud Place.

A concerned citizen called police after Mary had been missing for some time. Police arrived at the home for a welfare check and questioned the adults present about the whereabouts of Mary. It was quickly determined that everyone was lying. The next morning, December 20th, deputies were led to the backyard by Elwyn senior, where he confessed that both Elwyn Jr. and Mary were buried there. A neighbor has since come forward to tell reporters that he witnessed Elwyn Crocker carrying out some kind of activity on the grounds of the home with a shovel in recent months.

James, age 11, was found alive in the trailer, laying on the floor of a bedroom with a blanket over him. James has been described as “not having been abused” in the media, but it is hard to say at this time what exactly happened in the house, and the fact that he was laying on the floor with a blanket over him does not necessarily sound good. James’ biological mother, Rebecca Self, told reporters that he was likely not abused, or as abused, as the other children, because the adults were dependent on his social security check. James has been placed in the care of social services.

According to Homeschooling’s Invisible Children:

‘Elwyn Jr. and Mary were enrolled in Effingham County public schools for most of their lives. Several reports were made about the family to child services. In January 2014, Elwyn Jr. was withdrawn from school to be homeschooled. He was last seen in November 2016 at age 14. Mary continued to attend school until May 2018. She was withdrawn from school to be homeschooled in August 2018. She was last seen in October 2018 at age 14.’

Reports indicate it is possible that the parents did not sign an official withdrawal form to withdraw the children from school.

I am unsure as to the educational status of James, who has not been as widely reported on as the other children. I have not found anything indicating that James was enrolled in public school. It is very likely that he was also “homeschooled”, although it is clear that the children were not being educated in this situation, but abused and neglected.

From top left: Elwyn Crocker, Candice Crocker, Roy Prater, Mark Wright, Kim Wright. Mugshots.

Elwyn Crocker has been charged with felony murder, cruelty to children in the first degree, and concealing the death of another. The rest of the adults in the home were also arrested and charged. Mark Anthony Wright was charged with cruelty to children in the first degree. Roy Anthony Prater was charged with concealing the death of another, cruelty to children in the first degree, and possession of a scheduled or controlled substance. Candice Crocker and Kim Wright were charged with concealing the death of another and cruelty to children in the first degree. All are currently being held in jail and it is likely there will be more charges.

Patterns

Followers of this blog know how easy it is to withdraw a child from school in almost all U.S. states, and enroll them in a “homeschool”. In many cases, it is a legitimate homeschool and nothing is wrong. However, this lack of regulation has repeatedly been used to cover the most heinous child torture and homicide cases. The Crocker children, like homeschool homicide victim Erica Parsons, were missing for quite some time before their bodies were discovered, but had never been reported missing. Thankfully a neighbor noticed that Mary Crocker was suspiciously absent from the neighborhood and alerted police. But it still took months until law enforcement discovered her body. In the case of Elwyn Jr., it took years. The fear and pain Mary must have lived with, knowing her brother had been murdered by the adults in the home is hard to imagine. Like many homeschool homicide cases, Mary was tortured up until her death. Torture of a child is hard to conceal unless the child does not leave the home, and it is less likely that people will realize a child is missing if they have been homeschooled.

It is good that Georgia is attempting to enact legislation that would make these types of crimes harder to get away with. However, my concern is that DCFS had been called multiple times already in this case. The new legislation requires schools to contact DCFS if a child has been withdrawn from school under suspicious circumstances. That is one more call to DCFS where they may not do anything. While it is better than nothing, it is not enough.

There needs to be more laws around homeschooling than just something which requires yet another call to DCFS. DCFS had been called over the course of these children’s entire lives and nothing happened. While sometimes DCFS does a great job, in other cases they do not, and this is one of them. More regulations need to be in place around homeschool. If there were educational standards that children were required to reach, more reporting on the homeschool to the state, mandatory doctor visits, and mandatory disability services, there would be more opportunities for child abuse to be found out. Mary was reportedly malnourished, which is something a doctor would hopefully notice. Many tortured children are also starved.

There would also be less incentive for neglectful, abusive parents to withdraw children from school to start a “homeschool” if there were real requirements in place for proving the child is being educated. It might be a deterrent to abusers looking for an easy way to cover abuse if there were regulations around homeschool education. Abusive parents like the ones in this case are not pulling their kids out of school due to a genuine desire to give them a better education. They are pulling them out of school so they won’t be caught for abusing the children.

Starting a homeschool by providing an email address to the state and then doing nothing for years should not be something people should ever get away with, especially with disabled children. As I have written about before, the Americans with Disabilities Act is not optional. It covers everyone in the U.S. who has a disability. So why aren’t homeschooled disabled children required to receive disability services? One issue is that the ADA is a complaint-driven act. It is not enforced. However, if there were more laws around details like homeschooling, it would lead to the rights of disabled children being honored.

While James Crocker may “not have been abused” the situation he was living in was horrific. Subjecting a child to witnessing their sibling tied up in a dog cage and tasered is abuse. People think that children with cerebral palsy are not intelligent and do not know what is going on, a common bias about disabled people in general. All of the children in this case were abused. All of the children needed better monitoring. States need to have more than one reporting system in place for homeschooled children, and less incentive to pull your children out of school in the first place.

Inaccessible Gentrification Buildings Cannot Become the Rule in Syracuse

There is a problem in Syracuse, as there is in many cities, with a lack of affordable, accessible housing. Yet so many new fancy apartment buildings are being built. In Syracuse, options for housing for those who are renting are often older houses that are not accessible, or exorbitantly priced gentrification buildings, a few units of which may be accessible. I live in the Syracuse University area, and I have for about 6 years. I moved to this area because it is on the bus line and also walk-able, and there is a sense of community here. I work at the University, and like many disabled people, I do not drive. One of the reasons there are so many buses and shuttles in my area is because of the University. In other areas of the city, bus lines have been cut. In this area, Syracuse University provides an incentive for more buses, and it is therefor an area where disabled people want to live, as transportation is a big issue for us. City buses run frequently during the week and are accessible, and the University also has a fleet of shuttles, which are less accessible, but they are working on it. There is also an accessible “shuttle you home” van that brings students who live within a certain area home late into the night. My disabled friends and I have utilized this free service many times, when we were all students.

Syracuse University has accessible housing for students. My question is, what happens when disabled students graduate, get jobs and want to live in the community? What happens to disabled professors and staff members who come here for jobs? Syracuse University has the first Disability Studies program in the world, Burton Blatt Institute, the School of Education, the Disability Cultural Center, and the Office of Disability Services. As a result, the University gets many disabled students, faculty and staff. Students graduate, and many have found community here, especially in the neighborhood around the University. Sometimes, they would like to stay here, either at the University or in the city, and work and settle in. I hear it over and over again from graduating students: I cannot live in the city of Syracuse. It is not accessible. So that means they can’t stay here. And I have witnessed many people move to a more accessible city with better housing, or back home with their families because they have no other option.

For those who are from this area, we have heard many times that there is a “brain drain” in Central New York. Smart young people move away. People do not stay here after college. People leave. Well what is this city providing as an incentive to get people to stay? One of the biggest things is housing. Disabled people in Syracuse in general need housing, but I am also thinking about how we have a world-class Disability Studies program here, and its affiliated offices and institutes, how that brings people to Syracuse, but then they have nowhere to live. The city and the community need to do their part to advocate for better housing, to demand that accessible, affordable housing be built.

Recently, I read in the Syracuse Post-Standard that two entrepreneurs were proposing a mixed-use apartment building for Westcott Street, a street in the University area with many restaurants, bars, a popular coffee house, and other businesses. Westcott Street is part of what people call “the Westcott Nation”, and has a unique, local feel. It is not corporate, it is arty and community-driven, and many people walk/roll to the area from the surrounding neighborhood to eat and hang out. Several popular spots on the street are accessible, even the local dive bar. Now I am not entirely certain what the idea is for the building, known as Westcott Remix, but I did not read anything about accessible units being built, nor did I read anything about the restaurants and retail space in the building being accessible, although of course there are codes that require spaces to be ADA compliant. This could be because the newspaper here did not think to report any of that. A friend of mine attended the community forum on the building and said that the developers want this building to be affordable and include universal design. I think that this is a start, and I hope that this is truly the plan. It is my experience that disabled people are not contacted in regards designing access, and it is not done correctly.

The ADA is a complaint-driven act. So after the fact, if things are not accessible, it is a long and difficult legal process to try and get people to fix it. It is important to go into the plan in the first place with disability in mind, and it is important to realize that disabled people live in the community, and it would be great to acknowledge that we exist with every new building that is built, or any project that affects our lives.

Westcott Remix [image description: artist’s conception of a two or three-story brick mixed-use building with balconies outside each unit and stores at street level with purple and blue awnings, located next to Alto Cinco.]

The other issue is affordability. The two young men behind Westcott Remix said that it would not be as expensive as downtown apartment buildings, which can be 2 grand a month or more. The developers are looking to market to “graduate students and young professionals.” Rent may not be 2 grand, but what will it be? We need to be realistic about what “graduate students and young professionals” can really afford in this area. This building may be affordable, and that is a start. It is still in the planning stages and it remains to be seen what will happen.

Some think that housing is purely a money-making endeavor, and should be looked at as a financial investment and nothing more. Many developers of new, luxury apartments in U.S. cities want to market to young professionals. All of the exorbitantly priced gentrification buildings in San Francisco, for example, are there for “young professionals” who work in the tech industry. Seattle is in the middle of a housing crisis, which many say has been brought on by a proliferation of luxury apartments with strict rules for tenants, that are not affordable. As a result, both of these cities are experiencing a surge in homelessness.

Syracuse, like many cities in the U.S., is experiencing an influx of high-priced private apartment housing all over the city, and of course the ideal is to rent to young professionals who have money. Some of the luxury housing is geared towards students, in particular undergrads whose parents will pay the rent, and they are typically built in poor neighborhoods that are communities of color. People who are from the neighborhood are not the ones living in these homes. These types of buildings have caused problems in cities like Portland, Oregon; New York City, San Francisco, California; and Seattle, Washington, and studies say they are driving homelessness. People cannot afford the high rents. Buildings that previously were affordable are evicting tenants in order to sell up and join the movement of gentrification. Syracuse has long been a struggling, impoverished city. And now we are seeing more and more of these expensive, exclusive apartments being built. The same thing is happening in my hometown of Eugene, Oregon, too. Whether you are a part of the University, or you are a city resident, this is a problem.

Another issue is that mainstream society thinks that there are two types of disabled people: a super-wealthy individual like Brian Cranston’s character in “The Upside”, or the guy in “Me Before You”, or they think that all disabled people are living in section 8, on disability and do not work, and that the government is dealing with it. This is untrue and section 8 is not the answer to accessible housing, anyway. The issue is that disabled people are thought of as a separate class that somehow do not need to participate in society or be included in mainstream initiatives. There are graduate students, there are young professionals, there are people of all ages, there are professors, there are many, many types of disabled people in this world and in the Syracuse community.

Westcott Remix may not be built. And if it is built, it may have accessible units. I do not know, and it is not my intention to completely single this building out, because this is a larger issue with many components. However it is important that, moving forward, citizens begin to demand that developers include disability in their designs for buildings. Because all too often, they don’t. We need to find the middle ground between high end luxury apartments and apartments built for those on Social Security Disability or who are part of social programs. Because there are many people in between who need housing, too. Disabled people are part of every community.

Community members can make demands of the developers of these buildings and express our concerns to the city. The answer to housing in Syracuse is not more gentrification which favors able-bodied people of a certain demographic. Is our ideal for Syracuse to be a place where developers who wish to profit off of young people and not provide real, needed solutions for the city proliferate? Or is our ideal a city where the community can afford to live and have access, an ideal of inclusion? Whatever is being built here needs to be accessible. There needs to be wheelchair accessible units with accessible bathrooms that actually are accessible, not just someone’s idea of what that may be, which they did without consulting a disabled person. We need to have community inclusion and real affordability, and I do not mean by “affordable” that you need to have two room mates to pay rent when you are a grown adult. Disabled people need to be included in the conversation and that means any forums about new buildings need to have sign language interpreters and wheelchair and other access. Syracuse cannot follow the model of larger cities who have increasingly allowed overpriced housing to be built, and provided little to no other options. We need to provide housing for our disability community here, and Syracuse needs to do its part to be an inclusive city.

 

 

 

 

Embittered Millenial Gets Hearing Aids, Has Thoughts

Hearing people exalt hearing. It is just their default. They think that being able to hear is the best thing in the world. Anything less is sad and depressing. I have come to tell you that this is not true.

Today I got new hearing aids. Because hearing aids are exorbitantly expensive and barely covered, if at all, by insurance, it is hard to get them. I have been relying on a broken pair given to me by a Deaf friend who could not use them since they did nothing for him with his level of hearing loss. One of the aids completely stopped working, so I no longer wore it. The other one only worked about half of the time, and neither had ever been adjusted to my specific hearing, which is something that needs to be done. The aids were too old to be fixed- hearing aids only last about five to six years and these were about ten years old. I knew I had no choice but to embark on trying to get another pair of hearing aids.

Hearing people have no idea what this is like. They all think that insurance covers aids. When I tell them my insurance barely covers anything, they are always surprised. “But people need hearing aids!” Yes, they do. Millions of people. The first audiologist I went to, an audiologist I have been going to for over thirty years, quoted me a price of $3,600 after insurance, for two hearing aids. Out of the question. Like most people born in the 1980s, I am up shit creek when it comes to money. 1 in 4 Americans cannot afford a $400 emergency and live paycheck to paycheck, and I am no exception, even though at this point I have climbed out of poverty and am “middle class”. You would think a middle class person who works at a major university and has a master’s degree could buy hearing aids. Not in this country.

I tried another audiologist, one whom I have also been seeing for thirty years or so, and do not like, because they are constantly trying to sell me expensive aids when I go in for a routine issue–like trying to sell me a car. Same scenario. After insurance, the aids were still impossibly out of reach. I was getting pretty upset at this point. Oh I know what everyone is going to say, why don’t you put them on a credit card with extremely high interest and aggressive employees who badger you the minute you are late on a payment? Well I did not qualify for Care Credit, which is really not optimal, anyways. You try having good credit after being impoverished and disabled for most of adulthood. People always assume marginalized identities have good credit. Do you know how things work?

So the time came for me to call around to local disability services agencies and beg for help. This is a time-consuming process, since often people are unavailable, take a while to get back to you, or do not have good information. One agency had refurbished hearing aids for $375, but only for people over 65, which took weeks for me to get all the information about. I was finally able to find an agency to help, and after I proved to them that I was poor and actually Deaf, they started the process to pay for a new pair of aids for me. However, I was lucky that I didn’t make much money on last year’s taxes (which the agency wanted to see) because at the current amount I make, since I got a promotion, I would not have qualified. I was estatic, but also worried, because my aids were broken and these types of state agencies, while helpful, can take a very, very long time to get anything done.

Yes, I use sign language and have an interpreter at work and in the night class I take. However, like many with hearing loss, I do not solely rely on the interpreter and need to be able to hear some sound, read lips and look at the interpreter to fully understand. You know why? Because from the time I was a tiny child, I have worn hearing aids. I did not learn sign language until I was 14, and that was by chance. Like many disabled and Deaf people, the idea was to make me as “normal” and mainstreamed as possible, even to my own detriment. So I got very, very used to relying on hearing and sound to get by. As I said, hearing people love sound. They think hearing is the best. “Everyone should hear!!” Well what does this mean? I have had hearing aids for 32 years. I am extremely reliant on hearing aids, and it is not a choice that I made for myself, but one that was foisted on me. Yes, I am reliant on hard-to-get, exorbitantly expensive technology that is rarely covered by insurance, and that breaks every 5 years. When I was a child, the state covered all expenses around having hearing aids. As an adult, you are left to your own devices. If I had grown up signing, I would not be struggling like this. But also, the nature of my hearing is that I do have a little bit of hearing, and it works well around the human voice. So hearing aids work very well for me and I do like having that option. I also enjoy listening to music and watching movies, like a lot of people, and I absolutely need aids to do those things. Deaf and hard of hearing people should not have to solely rely on hearing aids, but they should be an option. They should be an option for all people, everywhere in the world.

Does this mean I don’t like being Deaf? Absolutely not. I love being Deaf. Hearing aids for me are just what they seem like — an aid. I use them to assist me at times. Not all the time. I don’t always need them or want to wear them.

I have been deafer than usual for many years, since finding hearing aids is such a shit show. This is not the first time this has happened. My entire adult life has been scrambling in one way or another for hearing aids. Medicaid barely covers them, too, if they cover them at all. Was it any different when I was impoverished and on Medicaid? No, it wasn’t. It was a miracle that I got hearing aids while on Medicaid, and that was  12 years ago, when some people still took Medicaid and now do not. That is another thing that able-bodied people think: the government just covers this stuff. Wrong.

I would figure out some way to get hearing aids, and after a couple years they would break, and I would drag them out as long as humanly possible. This is what I have been used to. Someday, I hope to be wealthy enough to buy myself a good pair of aids. I am very used to being Deaf and I like being Deaf. It is not sad. It is not depressing. I don’t know why people think that it is so important that I hear every single little sound imaginable, because most sounds are really not necessary for me to hear. Do you need to hear the sound a light switch makes when you flick the light on? Do you need to hear a plastic bag rustling? There are so many sounds that I do not need to hear in order to understand what is going on. No Deaf person’s heart is breaking because they cannot hear crickets chirping (throwing some shade at a recent New York Times article written by an audist). This is ableist nonsense and it is aided and abetted by those awful videos on the internet of “baby hears first sounds!”, where a baby gets a cochlear implant or a hearing aid. Hearing people love to cry over those videos and feel emotional. Those videos are ableist, audist garbage. The baby probably has no idea what the sound it just heard even was. I would not recommend implanting a baby with a cochlear implant, either, but that is a whole other discussion. But think about it–if I am having this much trouble maintaining hearing aids as an adult, what do you think happens when a child with a CI grows up? THE SAME THING. If you want to implant a baby with a CI then you better be prepared to pay for every expense surrounding that CI for the rest of their lives, otherwise you are really being an asshole.

After months of waiting, I got the hearing aids. It took about four months to get them. Of course, I only was able to get the cheap kind. But that is better than nothing. After being Deaf for so long, I can hear so many sounds with the aids in. It is surreal and strange. There is an adjustment period. Of course hearing people think this is great. You can hear every little sound now! It is actually annoying. I imagine I will get used to it, but I like having the option of taking the aids out and being Deaf. Just being my Deaf self. I like that I can use sign and not always worry about hearing aids. And that is how it should be for everyone. Teach Deaf and hard of hearing children sign language, do not force them to be reliant on expensive technology. There is nothing wrong with being Deaf. There are a lot of very good things about being Deaf, and a lot of shit that I just do not have to deal with. But something needs to change. And that is how expensive hearing aids are. They should not be this out of reach. We live in an audist, ableist world and it is often just the reality that a person needs hearing aids. Or maybe they just want them. Hearing aids to me are like glasses. We all have different prescriptions. We can take them on and off. They help us at work and in social situations. Not a big deal. Why are glasses so easy to get and hearing aids so hard? Insurance needs to cover the FULL cost of hearing aids and Medicaid and Medicare need to cover hearing aids and audiology FULLY in every state, not just for children.

But this is a part of a larger ableist problem. And that is able bodied people exalting being as able-bodied as possible. They don’t just do this to Deaf people, they do it to all disabled people. How many times have you seen some Facebook post about a wheelchair user who used some ridiculous exo-skeleton technology (how much does that cost) to walk across the stage at their graduation? Able-bodied people think walking is just as amazing as hearing. They love walking. Everyone should be bipedal and walk upright, they think. Check out Bad Cripple by Bill Peace for more about that.

If you want some insight into the world of cochlear implants and “implanting” infants and children with CIs, Dr. Laura Mauldin, a friend of mine who is fluent in sign language, wrote this book: Made to Hear: Cochlear Implants and Raising Deaf Children. She wrote a rebuttal to that awful New York Times article too, which the Times published.

Another great blog, while I am at it, is Planet of the Blind, by my friend Professor Steven Kuusisto. Also, there is Wendy’s World, by my friend Wendy Harbour, who is Deaf and got a CI as an adult.

The key to changing things is reading, listening to, seeing, or (whatever way you communicate), what disabled and Deaf people have to say about their own disabilities and experiences. Biases and ableism are very serious problems and you can understand, I hope, from what I wrote, how they influence every day life for people like me. Being disabled is not the problem, people being ableist is the problem. It causes huge struggles for people and it sets us back in very real ways. Don’t watch those videos of Deaf babies getting CIs, read/listen to blogs and books by Deaf and disabled people. Go to the source. And advocate for hearing aids to be fully covered by Medicaid, Medicare and all insurances!