John Scalzi's Lock In

I read a lot, and by a lot, I really mean a lot. One book that I am very excited to get into is Lock In by John Scalzi.

This is a sci fi book that deals prominently with disability. And probably contains some spoilers even though I am not far into the book yet.

Cover taken from the Amazon page where this book is sold (see link above)

The plot takes place in a world where a flu like epidemic has caused certain people to suffer from locked in syndrome where they are conscious but they are a prisoner in their own bodies. As some of you probably know this is a real thing that has happened to some people, not neccesarrily the flu portion, but the locked in portion.

In this world there are people that caught the illness but instead of being locked in they became able to allow their minds to be shared with the people that are locked in and so offer their services in that way. The main plot deals with a murder that has happened by a person who was allowing themselves to be controlled by a person that is locked in (at least that's what I think anyway).

 I am only 50 pages in and I've already seen some promising things about disability representation. I wonder how much invisible disability will factor in since some of the characters are able to put on a new body and so they would not physically show their disability as opposed to the people that use a robot like structure that makes their locked in status very visible.

There is also an overarching issue where the government feels they are spending too much money on the people that are locked in and the resulting cut in funding would leave countless people that are locked in with no way to support themselves and no hospital care. The reasoning being that, with all the "options" available to these people to interact with the public and hold down jobs that these people shouldn't be classified as disabled anymore so they should not get the support of the government.

I think that this is very poignant in relation to some of the things I've seen happen to disabled people. There are actual people out there that assume having things like handicapped parking, ramps, and special seating on public transit are privileges that are undeserved instead of a way to let people of varying abilities participate. That and the way that people that are on disability benefits are always living in fear of the government coming in to take away what meager living and healthcare they receive.

I've only gleaned this from the first 50 pages so I can't wait to see what they rest of the book holds in store!

Positive Representation or Dr. House, I am glad you aren't handling my care!

You can't imagine how many minutes I sat trying to think of the word that needed to come after 'Positive' in the title of this post. Medication brain sucks. I should, also, be doing more writing on my NaNoWriMo project but a post in the VF forums caught my eye and I had to jot down a few thoughts before I forgot them. It would happen. You know it would.

The post in question was talking about the new episode of 'House' on Fox. I don't watch the show anymore, but was aware that they had mentioned Wegener's on several occasions. Apparently, in tonight's episode the diagnosis was Kawasaki disease (another form of vasculitis) which isn't problematic by itself.

No, the diagnosis only became problematic when you added in what the diagnostic criteria were and the patient characteristics.

Kawasaki vasculitis effects children (most patients are under the age of 5), over 4,200 children in the US a year are diagnosed with it, and it begins with a fever that won't go away even after using fever medication (Vasculitis Foundation). The most effected organ in this disease is the heart, which can lead to aneurism, and some of the symptoms include swollen hands and feet; skin peeling in the genital area, hands, and feet; "strawberry tongue"; swollen lymph nodes; bloodshot eyes (with or without pus); joint pain and swelling. There are more, but most of them mimic flu symptoms. (Pubmed.com).

The patient in this episode of 'House' did not have any of the symptoms, nor was he in the right age group. No, the patient was 30 years old and was diagnosed through liver failure and a brain aneurism. No mentions were made of the heart or the autoimmune problems that go along with an autoimmune disease.

This is why the episode and diagnosis were problematic. Specifically for those of us with any form of vasculitis because they are so unknown and receive no attention from anyone. While this episode may have helped get the name Kawasaki disease out there it also attributed to it a ton of false information. Not only that but they apparently were able to "fix" the condition (if this is wrong, let me know). This hurts people not only with Kawasaki but also anyone who has a form of vasculitis. These diseases have no cure and by telling the general public on a tv show that it is possible to cure them, then there will be no support for research into a real cure which is something that those of us with these diseases and our supporters are trying to gain.

A diagnosis with Kawasaki disease, like most forms of vasculitis, requires life long care. It's not something that a doctor can just come take away and the doctors that think that (there are a few I've heard of that think one treatment is enough) get their patients killed.

I know that 'House' is not pretending to be a medical dictionary and that they are only interested in doing what is right for their plots, but they are not performing in a vacuum. It's just lazy writing and it can be harmful. If they really wanted to do Kawasaki disease would it be so hard to use a family with a 5 year old that was running a high fever for a week and seemed to have a flu that just wouldn't go away? Vasculitis is hard enough to diagnose in real life without adding in fake symptoms.

 Dr. House can go about diagnosing people who have things that they can't possibly have and then doesn't feel like giving them the correct treatment to what it was he diagnosed.  It makes me glad I have a real, competent, doctor handling my care.