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BIID and Self-Determination

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Written by Sean on Wednesday, September 24, 2008

Not that long ago, a doctor told me that I might not be the best judge of the best treatment path for myself. He implied that my judgement was skewed and that my assessment was wrong, by default. I don’t exclude the possibility that I could be wrong. But at the same time, I reject the idea that "doctors always know best". I believe in the concept of self-determination.

I first became conscious of that concept when I was working with people with cognitive impairments and mental illnesses. Wikipedia defines self-determination as "the degree to which people endorse their actions at the highest level of reflection and engage in the actions with a full sense of choice".

I am self-aware. I am not deluded, nor am I psychotic (and I have the doctor’s certificates to prove it!!!). I chose surgery as the best option, *for myself*.

Yet doctors have decided that I could not possibly know what I’m asking for. Considering that the average visit to your GP in the United States lasts 3 or so minutes, how can a doctor really listen to the patient. The patient never has a chance to really explain what they are experiencing, let alone tell their doctor what they think might help. It is no wonder that when someone with BIID comes along, they aren’t ready nor willing to accept that this patient may actually have a better handle on their own condition than they, the professionals, ever could.

We have a right to self-determination. That involves a responsibility – being fully educated as to what we are asking, the consequences, etc. But what good is a right if we are tilting at windmills?

 

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4 Comments

1 On 24 September, 2008, ahab said:

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Sean, this is a basic and general issue when we talk about mental health issues. Psychiatrists and similar by default assume your capacity of self determination is limited, to say it in a polite way. It is a huge seduction to them to label people psychotic if the patient’s behaviour is beyond average behaviour. And our behaviour is VERY beyond average behaviour. So their natural reaction is “He can never understand what he wants”, this implies you are psychotic. But First proved BIID patients are not psychotic, at least not the way they would not know what they want. They do know and they are aware of all consequences of their actions. This doctor you spoke to just has no clue about this condition, he has an oppinion, but he does nothing to check if his oppinion is false or right. He is a bad doctor and as a scientist he would be a real flop.

 

2 On 24 September, 2008, Chloe said:

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A physician was checking out my back last February. He said that I should never ski again because of the risk of paraplegia. I told him that I was going to carry on skiing, and that I could handle paraplegia. He became quite agitated, raised his voice and said “You don’t want to be paraplegic!”. Well, how very presumptive.

I love my GP though. She always gives me at least 30 minutes. She came to similar conclusions about my back injury (that it would not be unlikely for me to experience increasing paralysis). However she did not presume to lecture me about my high risk behaviours. We’ll see what she says next time, when I show up in a wheelchair having to explain about BIID.

The root of the problem is a lack of appropriate ethics. It’s alright to teach a five year old “Do unto others as you would have them do unto you”. However some people seem to get stuck at that level of ethical maturity, and never proceed to the next step of recognising that people are different from each other. Why would I presume that you wanted your arm amputated just because that’s what I want? (for example).

The best summary I have found is “The basis of ethics is personal autonomy”. To be sure, there can be grey areas. However, people lacking in this awareness can perceive that they have found the one true religion for themselves, and deduce that it must therefore be the one true religion for everyone in the entire world. Likewise, someone lacking in ethical maturity might think that because they don’t want to be paraplegic, it must be true for everyone. How naive and arrogant!

 

3 On 24 September, 2008, Tora said:

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That’s like… In this play we’re doing at school, there’s a story about a robot and there’s a story (another character tells it) that’s a perfect metaphor for both the situation in the play, and this one…
“A little girl woke up in the forest and found some delicious candy. She loved the candy so much that she ran home to give some to everyone. But they didn’t want it. She tried and tried to give it to them, and shoved it in their faces. The little girl was stupid and did not understand that just because she liked something, every one else would…”
I don’t think that was word-for-word from the play (Only seen that scene once… From the top of a ladder. Yikes.) but you get the idea… Just because that doctor doesn’t understand why you would feel a particular way doesn’t mean you don’t feel that way… It just means he’s ignorant, and too lazy or arrogant to educate himself. Like the time my dentist didn’t seem to comprehend that not giving enough numbing medicine (I forget it’s name) to a small child is a BAD IDEA… Especially if as a result five doctors are required to give her a filling… Four of them to hold her down… But that’s a different story. :)

 

4 On 24 September, 2008, Sean said:

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ahab, while the general idea you suggesting is pretty much on the spot, I think that the use of the word “psychosis” is innapropriate. Doctors will not necessarily assume you are psychotic because your behaviour is erratic. They would also not limit “psychosis” as a factor in being able to make your own decisions.

 

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About Sean

Sean is transabled. His body image is that of an L2 paraplegic. He has been living pretty much 100% of his public life from a wheelchair for the last decade, but hasn't found peace of mind (and is unlikely to until he does become a para).