I feel like when the idea was first introduced it was a helpful metaphor, but now it’s a weird token of victimhood? As a person active in the CI community when I meet someone who self identifies as a spoonie I roll my eyes and prepare to be exhausted.
Ok, what I’m talking about is people who engage in illness Olympics and endless one-upsmanship because their symptoms are their identity. I am allowed to be exhausted by people who belittle my experience as a chronically ill person with a multidimensional life.
I understand that not everyone practices person first language, but I personally find it to be preferable to making my illness equivalent to my personhood.
Ah, ok. Well I personally consider my autism central to who I am as a person, and wrapped up in every aspect of who I am. Its why I dont want a cure, because it would make me a fundamentally different person. A cure would be murder. So I don’t like detaching autism from myself like that. But I see what you mean, I at least understand where you’re coming from now.
I guess for me I see a difference between someone who “identifies as as spoonie” (which seems silly) and someone who uses spoon theory to describe their situation (which I think any disabled person can do).
I can see where each of you is coming from. I suppose the lesson is that the person ought to be the one deciding how much their identity is bound up with their condition? For example, many people develop mental illness later in life, so it feels more like an acute affliction rather than something they were born with.
To be clear I wasn’t calling autism a mental illness, although reading back it’s a little confusing due to the wording. The dialogue above was between one person who is autistic and another person who has a mental illness, both which I categorized as conditions (I suppose if we’re splitting hairs maybe this word could be problematic, but I think you get my point) which one may identify with to a greater or lesser extent (“being” versus “having”).
In the above discussion it is apparent that there is no universally correct attitude to have for everyone, i.e. it’s not correct to assume that every autistic person wants to identify with their autism the way @autismdragon@hexbear.net does, so my point was to give space for that person to decide, rather than for others to decide for them whether they “are” autistic or they “have” autism. Otherwise you run the risk of either belittling the person by identifying them with their condition when they feel separate from it, or belittling their experience by implying the real person is being suppressed by a condition which that person in fact strongly identifies with.
I just want to jump back in and clear up something: I am not talking about autism. I don’t honestly feel that the term spoonie as it originally was developed applies to people with autism/autistics, I always understood it to be a measure of physical illness. (If you want to use it for your neurodiversity you are welcome to do so, but then you’re not who I’m talking about when I talk about spoonies.)
I am in constant physical pain. There is no social model for my disability. I am in agony.
Also yes 100% to your second paragraph, exactly that.
I feel like when the idea was first introduced it was a helpful metaphor, but now it’s a weird token of victimhood? As a person active in the CI community when I meet someone who self identifies as a spoonie I roll my eyes and prepare to be exhausted.
Hmm… ok. See the last paragraph of this post for why I have a general distrust of people saying this.
Ok, what I’m talking about is people who engage in illness Olympics and endless one-upsmanship because their symptoms are their identity. I am allowed to be exhausted by people who belittle my experience as a chronically ill person with a multidimensional life.
Can you explain how your experience is belittled? I don’t understand that.
Person first language examples and why to use them
I understand that not everyone practices person first language, but I personally find it to be preferable to making my illness equivalent to my personhood.
Ah, ok. Well I personally consider my autism central to who I am as a person, and wrapped up in every aspect of who I am. Its why I dont want a cure, because it would make me a fundamentally different person. A cure would be murder. So I don’t like detaching autism from myself like that. But I see what you mean, I at least understand where you’re coming from now.
I guess for me I see a difference between someone who “identifies as as spoonie” (which seems silly) and someone who uses spoon theory to describe their situation (which I think any disabled person can do).
I can see where each of you is coming from. I suppose the lesson is that the person ought to be the one deciding how much their identity is bound up with their condition? For example, many people develop mental illness later in life, so it feels more like an acute affliction rather than something they were born with.
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To be clear I wasn’t calling autism a mental illness, although reading back it’s a little confusing due to the wording. The dialogue above was between one person who is autistic and another person who has a mental illness, both which I categorized as conditions (I suppose if we’re splitting hairs maybe this word could be problematic, but I think you get my point) which one may identify with to a greater or lesser extent (“being” versus “having”).
In the above discussion it is apparent that there is no universally correct attitude to have for everyone, i.e. it’s not correct to assume that every autistic person wants to identify with their autism the way @autismdragon@hexbear.net does, so my point was to give space for that person to decide, rather than for others to decide for them whether they “are” autistic or they “have” autism. Otherwise you run the risk of either belittling the person by identifying them with their condition when they feel separate from it, or belittling their experience by implying the real person is being suppressed by a condition which that person in fact strongly identifies with.
I just want to jump back in and clear up something: I am not talking about autism. I don’t honestly feel that the term spoonie as it originally was developed applies to people with autism/autistics, I always understood it to be a measure of physical illness. (If you want to use it for your neurodiversity you are welcome to do so, but then you’re not who I’m talking about when I talk about spoonies.)
I am in constant physical pain. There is no social model for my disability. I am in agony.
Also yes 100% to your second paragraph, exactly that.
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Weird wefwef error