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Category Archives: Curebie-ism

Autism

retrieved from saypeople.com via google (no association at all)

 

 

“Awe-inspiring Mysteries” and the “Cure”

When it comes to the cure I think much like Michael John Carley in his article “Articles of Understanding: GRASP, and the word “Cure.” Sure “curing” autism may be a good thing but in whose eyes? When I think of “cure,” I think of parents working hard, maybe even a little too hard on “fixing” their child that they forget to focus all the energy and time into their child. What’s even more interesting in this article is the debate on what words should be used in the culture of autism. The culture of autism, in my opinion, has a little bit more important than the medical culture because it’s outside the hospitals and the doctor’s that autism really takes its part in the world. It’s a culture and it’s sensitive just like any other culture; it’s a world inside a world, if you understand what I’m saying. In class my professor was telling us the difference between words and how if the first letter is capitalized or not really makes a big difference. It’s like race and like sexuality, people have to be careful not to offend someone by using derogatory words so asking before you assume is always a good idea. Carley states, “And GRASP feels that it is these individuals who should be dictating what words are used to describe them—not the doctors and researchers. Even if we at GRASP are completely wrong as to the medical accuracy of such words, do Caucasian people get to tell African- Americans what words should and should not offend them? Should Latino women get to tell Asian men what they have a right to get upset about? Words hurt. And almost every one of our folks admits feeling unwanted to some degree when a well-meaning person tells them they hope there’s eventually a cure for what they have.” (10) It’s really the individual that decides what they prefer to be addressed as. All these things play a big role in this culture, and if us outsiders (those not affected by autism) want to understand this world completely we have to take account for these things.

He is "normal." He has his own world just like you and I. He is "normal."

“I won’t profess to you, as someone with AS, that I clearly know what’s going on inside the head of what might be your non-verbal daughter or son sitting there in their own world. But I do feel there’s more going on inside that head than we, myself included, usually give their credit for being. We just don’t see it, so it’s hard to believe. Furthermore it’s not on a level we understand (yet), and because we love them, this hurts. Obviously, we want to bond with those we love, not think of them as, at best, awe-inspiring mysteries.” (Carley 4) With parents being so engrossed in finding a cure they forget or may not realize that though their child has autism, their child may be happy in their own world. But because, in the case of a non-verbal child, there is no communication so how can they know? It’s hard to think of someone you love not being able to communicate and experience things the “normal” way so of course some parents will do anything to fight autism and find this “cure.”

This passage made me think of society today and not just in the United States. There is a long history that continues today; that what we do not understand something we persecute it. Not necessarily that parents are persecuting their children but I think of it as when someone is so blinded by something they do not understand something that they take things into their own hands. In the case of the “cure,” priorities may become jumbled and things that should be most important (the one affected by autism) lose its place in line. I would also have to agree that finding a “cure” could not be labeled as disability studies because when I think of disability studies I think of focusing on the disability, how it works and who is affected by it, etc. When I think of “cure” I think of focusing solely on “fixing” the probablem. I don’t think of getting to know the disability like it was your best friend. “Cure” isn’t your best friend, it’s more like your mom, dad or doctor.

This leads me to the video “Fixing Autism.” I believe this video says a lot and is very powerful. The creator doesn’t really want to “fix” his daughter and it’s clear that many will not understand that because they cannot see in between the lines, which I think is so important to understanding this culture of autism. However, I think of this video as a PSA that should be instilled in everyone’s mind whether affected by autism or not. It’s very informational and the simple creativity the creator used was amazing! It made me want to share it like my professor shared it with our class.

We had a blog post to read called “Defining Curebie-ism” and it was an interesting read. It is very controversial, and when I read some of the comments, I really couldn’t finish because it is just that controversial. What I did learn though is that a “curebie” is defined as:

“a fanatical desperation to destroy a child’s autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs. The child ceases to be seen as a sentient person and instead is treated as if he were a battleground for a cosmic struggle between good and evil. Jonathan Shestack, co-founder and president of Cure Autism Now, exemplified this mindset when he wrote that autism parents do not have a child but “a shell, a ghost of all the dreams and hopes you ever had.”

This alone is enough to see the emotions and anger that can spark in this world of autism because it is a sensitive thing to people. As for me I don’t really have an opinion on this article besides, “Wow!” That’s really all my feelings summed in one word. It’s a very bold and blunt opinionated blog post. You have to read and decide for yourself really how you feel about it and what is your take on it as well.