I have been following Lauren McNamara’s blog and YouTube Channel for a number of years now, and she has consistently impressed me with her outstanding ability to form a tight, well-thought out, well-researched, and interesting argument. The arguments she makes in her videos and blog posts are so tight and concise that there is no real way for people to poke holes in it. Lately, McNamara has been getting national media attention for being a witness for the Chelsea Manning case. Much of her time in interviews, however, have been about Manning receiving hormonal treatments while she is in prison. Here is McNamara’s latest interview on CNN:
As you can see from this video, McNamara gives factual, concise answers to each of the questions she is asked. This is nothing surprising to me, since I am already aware of her intellect and the way she conveys an argument. What I am really impressed by, however, is her ability to remain calm and collected while she speaks to the reporter. The reporter doesn’t seem to accept being transgender as something that is legitimate, frequently referring to Chelsea Manning as “he”. McNamara frequently corrects him without getting visibly angry or annoyed. Her ability to maintain calm during that interview is impressive.
I hope we see a lot more of Lauren McNamara on a national stage. Her type of commentary is something the world needs much more of!
Her YouTube Channel:
“If you won’t listen to reason, there’s always…Towanda.”
I promised posts about religion and atheism, so here’s one!!
So, my answer to the question: Does god exist? I don’t know, but I haven’t seen any evidence which would prove the existence of god.
It’s quite simple. In statistics and science, it is commonplace to formulate a null hypothesis and an alternative hypothesis for an experiment of an analysis. The alternative hypothesis is the hypothesis you are trying to prove is true. If you attain enough evidence which supports your alternative hypothesis, you can reject your null hypothesis and accept the alternative hypothesis as true.
In the case of the existence of a deity or deities, the burden of proof lies on the person claiming their existence. In this case, “There is no god.” is the null hypothesis, and “There is a god.” is the alternative hypothesis.
In this case, I have not seen enough demonstrable evidence which supports the alternative hypothesis of “There is a god.” Therefore, I must stick with the null hypothesis of “There is no god,” which explains the “atheist” part of “agnostic atheist.”
As for the “agnostic” part of “Agnostic Atheist,” I realize that there is a possibility that enough demonstrable evidence supporting the alternative hypothesis from above may surface. Since I am open to that possibility, that ultimately leads me to the conclusion that I don’t know whether a deity exists or not.
In short, I am an agnostic atheist because I have not seen enough demonstrable evidence which points me towards its existence, but that evidence may be out there.
There are many (like Ray Comfort) who do not fully understand atheism. Many, like Comfort, would like to believe that we know there is a god, but we are angry at it. This does not make any sense. If we do not believe that a god exists, how could we be mad at it? It would be like me being mad at unicorns, even though unicorns do not exist. That’s not how it works. Atheism is the lack of belief in a deity, not anger at a deity.
I hope this serves as a formidable introduction to the topic. Until next time, “If you won’t listen to reason, there’s always…Towanda.”
Many people with cognitive disabilities and differences get caught in this position. They identify themselves as having a disability and speak about how it affects their lives, only to have the people they are speaking to dismiss what they say. They will say things like, “This person has this label and he/she/ze can’t do A,B, and C and you can. Therefore, your problems aren’t so bad and you’re not really disabled.” The person’s opinion doesn’t count in these people’s eyes. On the same end, these people will speak about the their opinions about the disability. The person with the disability will bring up points they disagree with or they find inaccurate. The response to that is often: “Your disability precludes you from really understanding what we are trying to say or do.” or “We’re not talking about you, we’re talking about those people.”
Wrong. You are talking about that person.
There are many points I need to address about these scenarios. I’ll first start with the idea that a person is not really disabled if they are able to do A,B, and C. It assumes that all people diagnosed with a certain disability have the same strengths and weaknesses. They do not seem to recognize the individuality of people who are diagnosed with a disability. A common phrase in the autism world is “Once you’ve met one person on the spectrum, you’ve met one person on the spectrum.” People abilities and disabilities are going to be different, regardless of what label they are given. The whole premise is false. I also need to address how the person saying that the person they are talking to can do A,B, and C, when they do not really know if that is the case. In speaking with my advisor at my undergraduate college, I brought up how autism researchers don’t always listen to autistic individuals. She responded by saying that these people are working with people who bite themselves and not really the people who are speaking out. Part of me wanted to say “I bite myself” back, but, I wasn’t willing to be open about my more personal issues, for a multitude of reasons. I’ll say this now: there are times where I do bite myself. It helps me to relieve anxiety. I have never broken the skin, though. I admit to having things easier than most other people who share my label. However, the fact that I do have it easier than other people does nothing to diminish the issues I do face. The facts that I graduated with honors from one of the best colleges in the United States doesn’t inherently make me remember to always make eye contact. You can’t just dismiss me as not being disabled or different enough when I make my opinion heard and then turn around and say I am too disabled or different to question some of your motives. This happens too often to too many people, and it needs to stop.
People need to be aware that high educational achievement and cognitive disability or difference are not entirely mutually exclusive. Temple Grandin is autistic and has a PhD. Einstein was believed to be autistic. John Nash, one of the greatest mathematical minds of our time, has paranoid schizophrenia. People shouldn’t assume that a person’s ability to do one thing easily does not necessarily mean they can do another thing, or that they don’t have certain issues of their own. I say, let’s get rid of the disability catch-22 and start having real conversations about disability.
“If you won’t listen to reason, there’s always…Towanda.”
For the past few years, autism groups have been spreading awareness about the condition. They want people to know the signs and the symptoms and to make sure children receive proper interventions. At this point in time, I think most everybody is aware of autism. However, people are not really aware of what autistic people have to say. The conversation about autism has been and continues to be dominated by neurotypical individuals. Autistic adults have been given almost no say in matters that affect them. Although I don’t claim to speak for anybody, I will be writing based upon what I have read and seen from autistic individuals. My research has showed me a large majority of autistic people, speaking and non-speaking, advocating for the concept of neurodiversity.
Neurodiversity is the idea that different neurological conditions are natural human variations and, rather than trying to find a cure for the conditions, we should strive for greater acceptance and tolerance of these differences and find ways to better support these individuals within a predominantly neurotypical world. The main assertion is that these is no one “correct” neurology, and that people should not be forced to give up natural aspects of who they are in order to be accepted by society.
There are a few common misconceptions about the concept of neurodiversity. The first one is that supporters of neurodiversity are all “high-functioning” and don’t know the pain of being “low-functioning”. Apart from my disdain for functioning labels, many people who support neurodiversity have been considered “low-functioning” by the medical community. The second misconception, which is related to the first, is that supporters of neurodiversity are ignoring the negative aspects of their condition. This also is not true. There are many who have written about the negative aspects of their condition, including Amanda Baggs and DJ Savarese. However, the largest misconception surrounds the anti-cure standpoint of the neurodiversity movement. There have been times where I have expressed the anti-cure standpoint and have had people accuse me of saying that their child wan’t good enough for a cure. That is not it at all. As Ari Ne’eman has said before me, “anti–cure doesn’t mean anti–progress.” Most people who advocate for neurodiversity advocate for reasonable treatments and therapies, such as speech therapy and occupational therapy. They advocate for greater access to education and for better quality of life. The main belief is that people can lead full and fulfilling lives while being autistic. The reason why people are anti-cure is because they believe eliminating autism would be like throwing the baby out with the bathwater. Everyone sees autism as a disability, everybody is aware of the negative aspects of autism, but autism, in reality, is a mixed bag, and that is what many don’t see. The neurodiversity movement basically says that autism isn’t so cut and dry, as most seem to think it is.
This movement is important because it is made up of autistic people speaking for themselves, along with their allies. It is also important because it raises issues that were once not heard about. There has been a rise in autistic people speaking out for what they want, and the general sentiment is one that supports the concept of neurodiversity. The concept of neurodiversity gives validation to people who have not been previously validated. It shows people with diverse neurologies that it is ok to be them. I believe it is important for people to be able to fully embrace who they are.
I’ve really only scratched the surface on this subject. Also, I need to note that the concept of neurodiversity does not only apply to autism. Neurodiversity can be used in speaking about a whole number of conditions, such as ADD, ADHD, depression, etc. I hope this is something people can chew on for now. Until next time, folks, “If you won’t listen to reason, there’s always…Towanda.”
As I was writing my last post, I got a little worried. I was worried about whether or not my representation of Autism Speaks reflected how they were today. Much of my information reflected data and videos from a few years ago. So, I was worried about being looked at as a shill who was pedaling old information to support an agenda….until I saw this video.
This 43-second video not only alleviated my worries; it also encompasses everything that is wrong with autism “awareness.” The video is of a simulator created by Autism Speaks to show people what it was like when their child did not make eye contact with them. It looks innocent enough, but when it is explained in proper context, that innocence is replaced with frustration and anger. It shows how Autism Speaks is a group run almost exclusively by neurotypical people, doesn’t consult autistic people in their decision-making, spreads fear and stigma of people with autism, and does not always make wise choices with their funds.
This video is all about neurotypical people. It is all about their feelings about autistic people not making eye contact. Not once does it speak to how autistic people may feel when they make eye contact. This is most likely the result of nobody asking an autistic person about eye contact. Although there are some who have no issues with eye contact, there are many who do. There are many who will lose their train of thought when forced to make eye contact. For others, eye contact causes anxiety. In a study by Dalton, et al. (2005), they showed that eye contact would cause activity in the amygdala of an autistic person’s brain, causing an emotional response. However, with neurotypical people, eye contact would activate the right fusiform gyrus in their brains, eliciting no emotional response. Apparently, this isn’t important to Autism Speaks. To them, being neurotypical is the right way to be and being autistic is the wrong way to be.
This video also speaks to another important idea worth noting: neurotypical privilege. It speaks to how autistic people are often told that they have to change their behaviors to appear more neurotypical. It is like having to put a mask on every day in order to go outside. Neurotypical people never have to worry about that mask because they have never been told to significantly change their behaviors in order to be accepted in society. The implication from this video is that more needs to be done to get children with autism to make eye contact and to work on neurotypical terms. These ideas do nothing but spread the idea of the autistic person as an “other.” Somebody to be feared. Somebody they need to get rid of. It does nothing to help autistic people.
It bewilders me that Autism Speaks decided to spend money on this. I don’t know how much it cost, but I imagine it cost a pretty penny to make. I think of all the places it could have gone, and yet, it was wasted on a stupid and useless piece of technology. Shows where Autism Speaks priorities are!
I would like to conclude with my two most important points. The first being that this video and this piece of technology shows that Autism Speaks isn’t about autistic people at all. It is about the people around autistic people. It is run by neurotypical people to serve the needs and desires of neurotypical people. The goals they have reflect neurotypical people’s desires for autistic people. It is clear that Autism Speaks does not really care about the desires and needs of people with autism. If they did care, there would be more money going to supports and services for autistic people and their families. They certainly would not have wasted money on a piece of technology meant to demonize autistic people for something as harmless as not making eye contact. My second point I want to make is that this video and this piece of technology shows that many of the behavioral changes expected of autistic people aren’t for the purpose of advancing an autistic person; they are for the comfort of the people around them. The piece of technology Autism Speaks shows in the video was made for eliciting discomfort in neurotypical people. It shows that Autism Speaks is more concerned with their comfort than they are of autistic people’s. The fact that eye contact makes many people with autism feel uncomfortable does not seem to matter to them. As long as neurotypical people are happy, Autism Speaks is happy.
“If you won’t listen to reason, there’s always…Towanda.”
As most people know, April is Autism Awareness Month and yesterday was World Autism Awareness Day. Many buildings in cities across the United States and the world “[lit] it up blue” for autism awareness. As somebody with four cousins who have autism and having my own autism spectrum disorder diagnosis (PDD-NOS), you would expect me to be happy about the amount of attention being paid to autism. But I’m not. The attention may be good, but the type of attention is not.
The main group behind the “awareness” is Autism Speaks. Autism Speaks was founded in 2005 by Bob and Suzanne Wright. Bob Wright was the former owner of NBC. The group was founded after the Wrights found out that their grandson was autistic. Since then, the group has grown to be the largest autism group in the world, receiving millions of dollars in revenue each year. Their funding is dedicated, for the most part, “funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families” (Autism Speaks website).
Sounds harmless enough, right? They’re funding a lot of scientific research, right? They’re increasing awareness, right? They’re advocating for the needs of autistic individuals, right? Wrong. Although they say they are advocating for the needs of individuals with autism, they don’t do a lot of listening to autistic individuals. There is only one person on any of their numerous boards who is actually autistic himself, and none who are on the board of directors. This flies directly in the face of the ideals of the disability rights movement, whose mantra is “Nothing about us, without us!”, meaning that the conversation on disability needs to include people with the disability not only in meaningful ways, but they need to take a driver’s seat position in the conversation. One of Autism Speaks’ tag lines is “Are You Listening?” However, that question should not be asked of the public, it should be asked of Autism Speaks. Are you listening, Autism Speaks? Do you consider the words and ideas of autistic individuals to be valid? Do you make policy based on what individuals with autism wish to see happen? Are your research goals in sync with the wants and needs of autistic individuals? At this point, the answer to all of these questions is no.
A large percentage of Autism Speaks money goes towards research. The vast majority of that money goes towards the etiology of the condition. While I don’t deny that etiology studies are important, they should not have the monopoly on Autism Speaks’ research budget. Many autistic individuals have been calling for increased research into quality of life issues and education. There are many individuals who are being denied full quality of life because they are denied the supports and services they need in order to do so. An increase in research in these fields will allow for more autistic individuals to lead they lives they want to lead and to contribute to society in positive ways.
Many autistic individuals also find the idea of a cure to be offensive. To many of them, it is like being told the way they are naturally is wrong and they have to change who they are in order to be accepted. Many autistic individuals are proud of their autism. Many will say that while it may not define them, it is an integral part of who they are, and to deny that is to deny them. That is why many individuals with autism are weary of Autism Speaks research goals of prevention and cure. These goals support fear and stigmatization of autistic individuals.
Autism Speaks’ fear and stigmatization does not stop at their research goals. It reaches over into their PSA’s. In their documentary “Autism Every Day”, they show numerous parents of autistic individuals lamenting about the problems that their children have. Although I can’t deny that many families who have individuals with autism do struggle and things can get challenging for them, this documentary goes too far. At one point in the documentary, one woman speaks openly about how she thought about driving off the George Washington Bridge with her autistic child. She said she stopped herself from doing it because of her neurotypical daughter (http://www.youtube.com/watch?v=O0vCz2KWMM0). The thing that bothered me the most about this, however, was how this woman said these things while her autistic daughter was in the room. One of the rudest things you can do, in my mind, is speak about somebody who is near you as if they are not. That is not ok. That being done in an “advocacy” video says a lot. It says that autistic people are not worthy of the respect that neurotypical people are given. It also says that autistic people aren’t full human beings. There was not one point in this documentary where an individual with autism was spoken to, and that is a problem.
Their PSA, “I Am Autism”, is not any better. It starts with the dark, ominous music. Then, the devilish voices comes in, “I am Autism.” The PSA continues to speak about how autism ruins marriages, embarrasses parents, and steals a child away from their parents. The second half of the PSA consists of people speaking back to “Autism.” Although it is meant to convey a hopeful message, there are places where it falls short. First, when it is introducing the people speaking back to autism, it does not mention one autistic individual. Additionally, it presents autism as something that can be separated from a person, when the vast majority of autistic individuals say that it can’t be. Many groups, such as the Autistic Self-Advocacy Network found this PSA to be extremely offensive. So far, Autism Speaks has not done a lot to distance themselves from PSAs like these. These types of videos only hurt autistic individuals and make their lives harder.
There needs to be a large overhaul of the autism world. Autistic voices need to be heard. Autistic people need to be put in leadership positions in groups about them. Research goals should be based on what autistic people want to know. Therapies should focus on helping a child with autism achieve their full potential and not focus on “normalization.” Also, autism should not be portrayed as a monster that steals a child’s soul, but rather a part of a person, which causes good and bad. Finally, autistic people need to be accepted as they are.
This month is not an easy one for many individuals on the spectrum. It is one where they are often spoken about, but not asked. It is one which talks about reducing fear and stigma, yet speaks about the hope that, one day, people like them would cease to exist. For me, it is one where I am reminded of how I was told to act as “normal” as possible, and how I was bullied for not always fitting into prescribed norms. It is one where I remember telling people about being bullied and was told that I had to work harder at acting “normal.” It is one which reminds me of my self-imposed closeting, and my desire to be “out” while knowing the possible negative consequences of it. Most of all, it is one where I know that things have gotten better for me, but have not for so many others.
At least I am doing something about it. This post alone speaks to that. I know I have to speak up. I know that it is my responsibility to make the changes. I can do it and I will!
This post is the first in many I will write this month. I plan on writing about neurodiversity, the hostility towards the concept, “passing”, the disability catch-22, as well as other topics. This post was just the introduction. Until next time, “If you won’t listen to reason, there’s always…Towanda.”