Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Friday, March 31, 2017

Alyssa reads: Ethical Analysis of Neuroimaging in Alzheimers Disease


Anyone else bothered by the consistent framing where we demonstrate the significance of disability related research by citing a significant/increasing “public health burden” and the money spent on care? Anyone? (Fellow citizens, that is your money too.)

Now we're going to focus on ethical issues around imaging/detection. (Which, I note, remain ethical issues surrounding imaging/detection whether or not you talk about public health burden and money!!!)

The “Roles for current imaging capabilities” section seems to take it as a given that identifying risk factors (for this thing we really can't treat that well) in order to predict who's going to get Alzheimer’s before they get it is important. I would have expected that to be one of the ethical issues to discuss: do we identify folks who are going to develop Alzheimer’s even though there's not really a way to change this? (And that's at the 100% certainty level, which, to be clear, is not current reality. We can't predict who will/won't experience this. We can't predict what cognitive changes a person will (or won't) experience as they age with anywhere near that level of certainty.)

(Yes, I think with something that would fall under the neurodiversity paradigm. Also cognitive liberty or freedom – people being in charge of their own minds while also valuing diversity on a societal level! I'm still inclined to treat neurological things that will eventually kill you as things I would like us to know how to change or prevent, because death. And Alzheimer’s will eventually kill you. Cognitive freedom also goes with “people can choose what to do with their own minds” and “not dying of dementia” is a common preference, let us science so people can make that choice.)

Ah, yes, good, stigma is getting addressed.
  • Predictive imaging may expand the pool of disease to people who are much younger, and therefore expand the pool that is stigmatized.
  • Both earlier prediction and stigma have the potential to reduce quality of life, including autonomy and the privilege to drive, and other daily functions.
  • There may be medical discrimination against people at risk, for example, with respect to eligibility for organ transplantation. (4)

My preference is for not stigma at all. Expanding the stigmatized pool is not doing this. Neither is reducing it. Both of those are justmoving the line of acceptable minds around. Nope. (Still don't like shoving people unwittingly or unwillingly into a stigmatized population.)

It's important to point out the quality of life issues where being in a stigmatized group, all on its own, causes problems. Because it does.
 
Organ transplant discrimination is a thing. I might not be able to get an organ (autism, people get rejected for that all the time, sometimes even when there's a family member willing to donate who isn't offering this for anyone else re: kidney or liver.) 
 
I think we need to work on the stigma in addition to working with the reality that it currently exists.

I appreciate that “Scan everyone who wants a scan” is one of the considered options. It gets the shortest discussion (probably because “do for person X what person X wants” isn't that complicated) and the issues brought up there are common to the other groups as well. (Who should have access to the results of testing is not only a question when the test was done without medical indication. It might have different answers depending on the level of medical indication for the test. I'm very much inclined towards “The person who had the test decides who even knows the test took place, and similarly who gets results.” It's hard to coerce test results out of someone if you don't know there's anything to coerce. The tricky thing is to make sure employers can't coerce the test itself.) Unequal access remains an issue, but let's not pretend it's a non-issue for any of the other options.

I'm betting the impact of results on personal liberty and similar closely resemble the impacts of other known cognitive disabilities. Just a hunch.

OH MY GOD. NO. “the greater predictive power combined with the growing number of people with AD might be the brick that breaks the back of the current health care system. (6)” NO. YOU DO NOT PUT THE BLAME FOR OUR MESSED UP SYSTEM EVENTUALLY BREAKING ON SICK OR DISABLED PEOPLE. NO. NO. NO. YOU. DO. NOT. DO. THIS. Go yell at insurance companies and congresspeople instead. NO. I hate you when you do this nonsense with autism and I hate you when you do it with AD and just generally hate it when you do this with the people who get screwed over by the current system that really, really wants everyone to be abled and to get briefly and treatably sick in ways that follow the textbook. And you know, this idea that we're a burden on some system always, always gets used to justify measures that reduce our personal liberties. When you write things like this, you are part of the stigma problem. Stop it.

(Try instead “The current health care system is designed for XYZ and not ABC. Given ABC, changes are needed.”)

The incidental findings question. Yes, protocols being decided on for these before the imaging. (Ulysses contract connection?)

Much remains to be learned about functional anomalities.” (8). Well. Yes. We only seem to study this stuff when there's a perceived deficit. If it's worked for the person their whole life, why would we have noticed anything? [Hi, Galton the eugenicist deciding not totake issue with the lack of a minds eye because it seemed most commonin “men of science.” We're biased as heck about what unusual things we decide are problems and what unusual things we decide to study like the people who have them are objects.]

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