by Chelle Hope
The tweets that are retweeted into my timeline are mostly either Trump-related or are aggressively cute images to counteract the Trump effect. As I was scrolling through the emotional rollercoaster that is now Twitter, terrified at the implications of a man clueless to the intricacies of the balances of power in the US – he may be the world’s first accidental autocrat – I smiled.
I couldn’t help it. The grinning face of Keah Brown (@Keah_Maria), creator of #DisabledAndCute, is just so gosh darned cute.
In mainstream media, the representation of people with disabilities has been overwhelmingly white, male and straight. The first thing I noticed about #DisabledAndCute is that it is so diverse. There is a vast range of people with disabilities represented, including people with disabilities who are not readily recognisable as such from an image.
Intersectionality has also been at the forefront of representation in this project from the beginning. I don’t remember the last time I saw a hashtag representing a group with such a wide range of intersecting identities, from race and gender, to sexuality and body shape. The visuals are all stunning and each one tells a story completely different and yet with an underlying shared narrative; we are all cute, whatever that means to each of us. We all have a right to see ourselves as cute, regardless of how others might perceive us.
There has been some criticism, as I figured there would be, from people who believe the hashtag to be infantilising and patronising. Worse still, there are those who believe #DisabledAndCute to be a form of what is known as ‘inspiration porn’, which is where able bodied people view people with disabilities, particularly through images and often with inspiring text attached, as inspiration for their own lives. A typical example is something like: “The only disability is a bad attitude,” which is often accompanied by an image of a person who very obviously has a disability, in a triumphant pose, preferably at the top of a hill or mountain.
It depends on how it’s framed. If you view #DisabledAndCute as a project aimed at able-bodied people, with a didactic focus, then the word ‘cute’ might take on quite a different meaning. But Keah Brown created the hashtag as a means of celebration, to acknowledge that her self esteem could be and is connected to feeling good about how she looks, despite the messages she and others with disabilities might receive from the world. It is a refreshing counter-narrative to a media still downright hostile to the idea that people with disabilities can look great and celebrate how they look.
A robust dialogue on the issue of representation, from within the disability community, is important. There is also a propensity to shut down certain narratives before they have a chance to develop nuance and complexity. We need diverse narratives and voices to share wide ranging experiences of disability. We don’t all think the same. If an idea is overwhelmingly positive for a lot of people who have disabilities and there are some who don’t like it, they have every right to say so, though sometimes it might be better to say, “It’s not for me,” and move on.
When I went to post my own pics to #DisabledAndCute, quite soon after it was created, I first posted an image of my face, cropped. I am no stranger to posting selfies to Twitter. I must admit I don’t need a hashtag to boost my own self esteem. As I thought more about the importance of visibility and everything that might mean, I decided to post another couple of wider shots that included my wheelchair and amputated leg. Those in the know would be able to tell from my short stature that I live with spina bifida. As a bit of a media studies nerd, I was fascinated by the idea that with #DisabledAndCute we get to decide how to frame ourselves. We decide what’s cute. We decide how much of ourselves to include in the frame.
Since I started following and engaging with #DisabledAndCute, I’ve been thinking much more about the space that social media allows us to tell our own stories and shape our own narratives. That ‘space’ is problematic and complicated because there is always a tension between us and our motivations and desires and the demand from able bodied people that we educate them on every aspect of our lives.
Since I saw the very first #DisabledAndCute image, from Keah Brown herself, it has felt like this is for ‘us’ – people with disabilities. Naturally, a lot of people who don’t have disabilities have viewed and will continue to seek out or stumble upon the hashtag. If they learn something or their perceptions and preconceived notions are altered, that’s wonderful. #DisabledAndCute centres people with disabilities, with everyone else made spectator. We control the narrative.
The Senate is at it again, trying to rush through disastrous legislation to take our health care away. The Graham-Cassidy bill introduced this week will have the same devastating effects as the repeal bills we’ve been beating back all year. It will slash Medicaid funding, leave millions without health insurance, and allow insurance companies to deny you coverage if you have a disability.
ACA repeal is back – and so are we
September 15, 2017
Graphic from FamiliesUSA showing that the Graham-Cassidy bill and the previous repeal bills have the following things in common: eliminates coverage for millions, makes massive cuts to Medicaid, eliminates the ACA’s guarantee of financial help for lower- and middle-income families, guts protections for people with pre-existing conditions, pushes health care costs onto statesWe stopped them from taking away our health care before, and we can stop them now. You know the drill: call both of your Senators, then email them. You can find phone numbers for your Senators’ offices at contactingcongress.org, and use Access Living’s email tool to send them emails. You can make your own scripts when you call and email, or use ours:
Script for calling your Senators
My name is [your name], and I live in [your town]. I’m [calling/writing] to ask Senator [Name] to vote NO on the Graham-Cassidy bill, or any other bills that would repeal the Affordable Care Act, cut Medicaid funding and leave millions of people with no health insurance. The people of [your state] are still watching, and our health care is just as important to us now as it was in July. We’re counting on you to do the right thing and save our health care. Please vote NO on Graham-Cassidy.
If you find it easier to leave an answering machine message than to talk to a staffer on the phone, this weekend is a great time to call. If you don’t speak, you can call using your AAC device, or get a friend to call in and read your message. No matter how you speak out, your voice matters right now. A flood of calls and emails will remind the Senate of what they learned earlier this year – Nothing About Us, Without Us!
Verbal vs Nonverbal Communication
There are many differences between the two forms of communication, namely verbal and nonverbal communication. In some places, non-verbal communication assumes more significance than verbal communication and in other places it is the vice versa. Let us begin our understanding of these two types of communication in the following manner. Man is a social animal and cannot live alone. He lives in a society and interacts with others that are a basic necessity for him. Language plays a vital part in all interactions of a man in the form of verbal communication, but there is another form of communication which is equally important in a man’s interactions with others. This is known as nonverbal communication that is all about getting cues from gestures, facial expressions and eye movements of a person. Through this article let us attempt to highlight the difference between verbal and nonverbal communication while gaining an understanding of both concepts.
What is Verbal Communication?
First let us begin with Verbal Communication. This can be defined as the communication or exchange of ideas that occurs through words. This can be both written and oral. Verbal communication allows individuals to exchange ideas, opinions, values, suggestions and creates an atmosphere where an individual can connect with another. When we engage in a conversation with a friend, this is verbal communication because it allows us to use words to communicate with the other person. The significance of verbal communication is that it creates a condition where transferring information becomes very clear. Let us take the case of an industrial setting where communication is verbal, but mostly this is written communication. Through letters, various documents, reports, and memos, the workers communicate with others. This is not oral communication in most situations but written communication. Since words are used for exchanging ideas, we consider this as verbal communication. Now let us understand what is meant by nonverbal communication.
What is Nonverbal Communication?
Nonverbal communication is through facial expressions, gestures and also thorough postures. People communicate a lot non-verbally. Have you ever seen two people not knowing each other’s language communicating with each other? Though they feel a lot of difficulties, they somehow manage to tell each other what they want to convey the message with the help of facial expressions, eye contact and movement of hands.
Why go so far as to talk about people knowing languages? A mother communicates with her newborn child through her actions, and the child learns to understand her wishes in a quick time. An infant knows no language, yet a mother knows all about her child with the help of the movements the child makes and the manner in which he cries or emits sounds. This is all non-verbal communication.
Even in the workplace, at schools, on the streets nonverbal communication takes place. In the workplace, nonverbal communication can take place between team members and the manager. For an example, a subordinate learns to understand the mood of his superior with the help of his frown or facial expression. In a classroom, a glare from the teacher is often more effective than her shouting or scolding. This highlights that in real life, non-verbal communication takes precedence over verbal communication as the first impression that gets created is through one’s confidence and body language that is a type of nonverbal communication. Now let us summarize the difference between verbal and nonverbal communication in the following manner.
Verbal vs Nonverbal Communication
What is the Difference Between Verbal and Nonverbal Communication?
Language is a vital component of communication as it helps in verbal communication through words. It helps us in conveying our thoughts, ideas, opinions, even our aspirations, and frustrations.
However, our body language, facial expressions, eye movements, and gestures make up an important part of communication known as non-verbal communication.
Nonverbal communication is very effective in empathic listening
Both verbal and nonverbal communications serve the same purpose though there are some situations where nonverbal communication gains ascendancy over verbal communication.
But in all seriousness nonverbal communication is still considered a language in the autistic community so fuck people who think it is not a language !!!!!
Sensory Issues – Our 7 SensesMost of us are familiar with the 5 senses, but we also have 2 other senses that are less well known: these are the sense of movement (vestibular sense) and the sense of body awareness (proprioception).
Our senses provide us with information to make sense of the world, and for most of us, most of the time, they work so well that we take them for granted. However, many people with autism seem to have sensory difficulties at least some of the time, some have sensory challenges a lot of the time, and some may find it difficult to integrate the information from the different senses.
Each of the 7 senses may become over-sensitive (hyper-) or under-sensitive (hypo-) to stimulus, e.g. a child who is hyper-sensitive to light may turn the lights off in class; conversely a child who is hypo-sensitive to light may turn all the lights on (this can be a difficult situation if both children are in the same room!).
For some children who are hyper-sensitive, the sensory stimuli may actually cause pain. If you are finding it difficult to intellectualise hyper and hypo-sensitivity, let me suggest that most of us have experienced it first hand. For those of you like me who have ever had a hangover (or bad headache), I’m sure you understand what it means to be light and noise sensitive! And the night before the hangover, you’ve probably had a good experience of having difficulty with your sense of movement (trying walking along a straight line), or your body awareness (how did you miss your mouth with that drink?). If you don’t drink, then think back to childhood when you spun on the merry-go-round so much that you had similar difficulties.
Louise Harrington was starting to doubt that she had anorexia. She knew she was shockingly underweight, and she desperately wanted to gain at least 30 pounds. She had no desire to look like a model. She had no phobia of fatness. She wasn’t afraid to gain weight. She didn’t have any of the typical body image worries that overwhelm many people with anorexia.
Instead, what trapped Louise in a haze of malnutrition and compulsive exercise for more than 30 years was that eating too little and exercising too much blunted the feelings of overwhelming anxiety that threatened to drown her. (Louise asked that we not use her real name.)
The psychologists and psychiatrists she visited couldn’t comprehend what was driving her behavior. When she was in her 20s, one doctor told her she couldn’t have an eating disorder because she didn’t have a fear of fatness. Other therapists said she was either lying or in serious denial. The assumption that her anorexia was necessarily driven by a desire to be thin further frustrated and alienated her, so she stopped trying to get help.
It wasn’t until she turned 40 and she was fainting regularly at work, and was in and out of the hospital with malnutrition, that Louise tried, once again, to get psychological help. For the first time, a psychiatrist connected Louise’s longstanding social difficulties with her rituals around eating, and brought up a possibility that no one had never mentioned: autism. She was diagnosed with autism shortly thereafter.
“The diagnosis has helped me to understand why I struggle so much with life,” Louise said in an email interview, her preferred form of communication. It also helped her understand her eating disorder, which functioned not as a way to lose weight but rather to feel in control of her anxiety and the world in general. In fact, if it were possible to under-eat and over-exercise without losing weight, she says, she would do it. The only thing Louise seemed to have in common with others who have anorexia was near-stratospheric levels of anxiety.
On the surface, autism and anorexia couldn’t seem more different. People with autism are supposedly not attuned to the emotions of others, whereas people with anorexia are commonly thought of as oversensitive young girls hell-bent on fulfilling cultural ideals of thinness. But strip off the misconceptions, and the two conditions are far more similar than anyone believed, says Janet Treasure, a psychiatrist at King’s College London and director of the eating disorders program at Maudsley Hospital in London.
“I must admit I was skeptical at first when I read about the links,” Treasure says, “but when we were looking at various aspects of vulnerability to anorexia, such as thinking styles and emotional styles, they were actually very similar.”
Emerging research shows that people with either condition have difficulties understanding and interpreting social cues, and tend to fixate on tiny details that make it difficult to see the big picture. What’s more, both groups of people often crave rules, routines and rituals. Genetic studies also suggest overlaps between autism and anorexia.
Anorexia is not the only eating disorder connected to autism. Although the majority of research on eating disorders in autism has been focused on people who routinely eat too little food, some women with autism may also turn to food for comfort.
Some estimates hold that as much as 20 percent of people with enduring eating disorders have autism. Because girls with autism are frequently underdiagnosed, it’s often an eating disorder that first brings them to clinical attention — although men and boys with autism can and do develop eating disorders, most of the research and clinical attention has focused on girls and women. This gender bias has led some to refer to anorexia as ‘the female Asperger’s.’
Recognizing that someone has both autism and an eating disorder is only the first step. Few psychologists have expertise in helping people who have both conditions. Historically, eating disorder treatment mandates group therapy, but people with autism often have difficulties with social interactions. This treatment also requires that the individuals make dramatic changes in their eating routines, often in a short period of time. But some people with autism find it challenging to meet this demand because of their insistence on sameness. As a result, many people who have both autism and anorexia find it difficult to recover from their eating problems, and are less likely to recover than those who have anorexia alone. Louise and others like her are demonstrating that although the overlap between autism and anorexia is more common than anyone realized, there are still few effective treatments for this dual burden.
A familiar pattern:
To explain anorexia, psychologists often point fingers at modern Western culture and its emphasis on an excessively thin female body. But skeptics point out that if this were true, the prevalence of anorexia would be a lot higher than 1 in about 100 people, which is what it is today in the U.S. and other Western countries. Early genetic studies in the 1990s showed that anorexia is strongly heritable and tends to run in families. Others began to link anorexia to personality traits such as anxiety, perfectionism and a tendency to get stuck on certain thoughts or ideas.
In the early 2000s, psychologist Nancy Zucker, who runs the eating disorders program at Duke University in Durham, North Carolina, wanted to better understand some of the social and cognitive difficulties many of her patients experience, in order to provide better treatment.
As she began to search the literature, she came across some studies on autism and was struck by the similarities between the cognitive profiles of the two conditions. In particular, she noticed that people with anorexia struggle to recognize the impact of their behavior on others. “They can be very empathic and have a great desire to be accepted by other people, but they also seem a bit impervious to how their starvation affects others,” she says. In that sense, she says, people with anorexia seem a lot like those with autism.
Zucker wasn’t the first scientist to make this connection. The first study on the two conditions was a 1980 case report of a young girl with ‘atypical’ anorexia and autism. Three years later, Swedish psychologist Christopher Gillberg published a British Journal of Psychiatry paper that hypothesized a link between autism and anorexia. Over the next 20 years, the field languished. But in the mid-2000s, Treasure, Zucker and other scientists picked up on this trail.
In 2007, Zucker and her colleagues outlined the potential links between autism and anorexia in a 31-page review article that revealed just how similar the two conditions can be. People with anorexia often have difficulties making friends and sustaining social relationships even before the onset of their condition. Because high levels of social discomfort and withdrawal persist even after they begin eating regularly and return to a normal weight, these social difficulties are not likely to have been caused by anorexia or malnutrition. The review pointed to numerous studies of people with anorexia that documented rigid patterns of thinking and behavior, an insistence on sameness and difficulty with change — all of which are commonly seen in people with autism. Lastly, neurocognitive studies showed that people with anorexia have trouble with what Treasure calls “seeing the forest for the trees,” and also with mentally switching between different tasks. These traits, the researchers pointed out, are also seen in people with autism.
A year later, Treasure’s group in London demonstrated that women with anorexia score significantly higher on the Autism Spectrum Quotient, a self-report questionnaire that measures autism traits, than controls do. A 2014 study in Molecular Autism found that although only 4 percent of the 150 girls receiving outpatient treatment for anorexia at a London clinic had possible or probable autism spectrum disorder, one in four scored above the cutoff for autism on a screening questionnaire. This finding suggested that the girls had high levels of autism traits, even if they did not have a clinical diagnosis. A separate study in 2012, also by Treasure’s group, found that the starvation brought about by anorexia exacerbates the autism traits clinicians and researchers see. Even after recovery, they found, women with anorexia continue to struggle in social situations and with cognitive skills, although not as much as when they are acutely ill.
I’m going to say something radical, something that may shock you. Brace yourself. Are you ready? Here goes:
It’s not a good idea to make children drink bleach.
If you’re not familiar with the autism community, you may wonder why my statement would ever be considered controversial. Unfortunately, in the autism community, where there are disagreements about everything, even this seemingly straightforward statement causes arguments.
The controversy, such as it is, began during the Autism One conference, held in Chicago from May 23-27. The conference is a one-stop shop for parents looking for alternative treatments for autism, and it featured some of the most prominent supporters of the idea that vaccines cause autism, including discredited scientist Andrew Wakefield and celebrity autism mom Jenny McCarthy.
But the Autism One presentation that may have gotten the most attention this year was this one, about a treatment called MMS. In it, Kerri Rivera, the founder of a “Biomed-based Autism Clinic in Latin America,” explained “how MMS (chlorine dioxide) has become the “missing piece” to the autism puzzle” and how she has used it to recover 38 children in 20 months.
MMS, it turns out, stands for Miracle Mineral Solution. Go to the MMS website, and you’ll find that, “The answer to AIDS, hepatitis A, B and C, malaria, herpes, TB, most cancer and many more of mankind’s worst diseases has been found.” These kinds of expansive, evidence-free claims are a sure sign of quackery, and identifying MMS as snake oil is no harder than realizing that $23 million is not waiting for you in a Nigerian bank account.
Unlike some kinds of pseudoscience, though, MMS has the potential to be quite harmful. Check out the slides for Rivera’s presentation, and you’ll find that MMS is a combination of sodium chlorite and citric acid which, when mixed together, releases chlorine dioxide. MMS, in other words, is bleach. Rivera recommends giving it orally up to eight times a day. There’s also a protocol for enemas, applied two to three times per week, and baths, which can be taken every other day.
Rivera’s own slides admit that MMS can cause fevers, but she calls this a “good thing” and recommends giving an enema every day during the course of a fever. She also talks about what to do if the child suffers a Herxheimer reaction, which can cause fever, chills, hypotension, headache, hyperventilation, elevated heart rate, and muscle pain.
If you don’t find all of that appalling enough, you can read this testimonial from the parent of a non-verbal autistic boy who is using MMS. The MMS is causing vomiting and diarrhea, but the parent is frustrated because the non-verbal boy can’t give any feedback about how he’s feeling. Well, how do you think he’s feeling?
Let’s state the obvious: There is no reason to give bleach to any child, for any reason. There is not a shred of scientific evidence that MMS is an effective treatment for autism. Some purveyors of quackery have spotted a lucrative market and are trying to take advantage of it. But their protocol is far closer to child abuse than it is to effective medical treatment.
Sadly, Autism One and those who attend it have had a very hard time recognizing these simple facts. In a post at Age of Autism, Julie Obradovic tries to defend MMS without actually defending it. Instead, she mentions that Autism One presenters included M.D.s, Ph.D.s, and a Nobel Laureate. But the presence of smart people at a conference that promotes quackery doesn’t change the fact that it’s promoting quackery.
Second, Obradovic argues that Autism One “is loaded with good people, good parents, and great doctors who are willing to suffer personal attacks in order to make progress in the medical treatment of our very sick kids.” Whether or not this characterization is accurate doesn’t really matter. Again, the motivations of the people at Autism One are irrelevant to the subject of MMS. MMS is the worst kind of quackery, and Autism One gave it a forum.
What’s happened is that MMS has gotten caught up in the same arguments that always divide the autism community. Many bloggers have for years attacked Autism One specifically and alternative treatments generally (and in my view rightly so — there are many dubious treatments besides MMS promoted at the conference). Many people who use those treatments have attacked right back. And so it is, reflexively, with MMS.
But I want to put those arguments aside for the moment. Forget all the divisions in the autism community and just think about MMS. If you heard about this treatment and didn’t know what it was for, what would your reaction be?
To be fair, a few commenters on the Age of Autism post have done this thought experiment and have called out MMS for what it is. But there ought to be more than a few.
The issue here is not about what causes autism, how to treat autism, or whether autism can be cured. The issue is not about autism at all. The issue is simply whether you believe it’s OK to force bleach down children’s throats or up their colons.
There are many things to argue about in the autism community. MMS isn’t one of them.
If you’re against MMS, you can sign this petition at Change.org, which asks the FDA, the Federal Trade Commission, and the Department of Health and Human Services to issue cease and desist orders on the selling of MMS.
This is fuckery