Excuse me while I rant for a bit
Right now I'm dealing with a bunch of people who seem to think that I'm not capable. I can deal with one or two people who think this, because I'm used to people who confuse chronic illness for incapacity in other things, but there's a widespread idiocy that surrounds me right now. None of my close friends are guilty of this. None of the friends who regularly read and comment on my blog are guilty of this. Some of the people who are causing me angst are new to my life and some of them are acting as if they're new.
I want to make a set of rules for dealing with people who have chronic illnesses. This is my initial set of thoughts (based on recent experience):
#1 Do not assume I am stupid.
#2 Do not assume I can't make my own decisions on major and minor things without intervention from someone who is not disabled. If I ask for help or for an opinion, that's when you should offer your thoughts and opinions.
#3 Do not get me to spend all my spoons explaining things unless those explanations are important. Continuing demands for explanations are not only exhausting, they're demeaning. Match your needs for knowledge of my life with my willingness to talk: if I'm not willing, ask why before you demand more. I'm quiet about some subjects because I have very good reasons. On other subjects I'm quiet face to face, but will talk abut things here because I have insufficient spoons for the number of conversations that arose because I was willing to talk. I was waking up political (my friend Yaritji's words) because other people saw me as accessible and took over my life with their views about what I should be or how I ought to express myself. I had to be there for each and every one of them with explanations, all the time, because they didn't accept that anyone other than them had the same questions and that my capacity to answer without it damaging my life was not infinite. My life is not less important than the lives of everyone around me. I get to decide where and when I talk.
#4 Do not turn me into a client when I'm a friend. Especially don't do it without my express permission.
#5 Do not talk down to me.
#6 Do not assume that I am without flaws and will never make mistakes. I'm human and am just as capable of errors as the next human. This doesn't make me stupid or incompetent. It just means that I make mistakes from time to time, especially when stressed.
#7 Understand spoon theory. I am at a low point right now and have very few spoons. I'm measuring my time and energy out very gently. This is not always: it's just right now. I still have to earn money, celebrate Jewish New Year and a whole bunch of other daily life things. When someone simply assumes that I have unlimited energy for them (because they need it) they're limiting my capacity to do other things on days of low spoons. If you want me in your life, accept that I am a supreme font of energy and intellect, but limited by my health, which means that I have to measure my life in coffee spoons.
#8 Work is very important to me. I love it. I love my teaching and my writing and my research. Do not say "Why don't you give them up, it will be easier?" or "Why don't you put my social needs above your work?" Do not make my life decisions for me.
#9 My brain always works. I meet my work deadlines. These are constants in my life, even when everything else goes awry. These are constants: let me repeat it for it's important. My chronic illnesses however, are not constants. Spoon theory is very useful for understanding part of this except that, with me, even when I am very ill, my brain still operates. I can teach. I can think. My brain always works. It is, however, always eccentric. My intellectual life is interdisciplinary and my novels are not like other novels because of this. Pushing me into neat little holes either intellectually or physically just doesn't work. All people who have chronic illnesses are like this. All people are like this. Unique. Individual. My individuality includes an impossibly strong work ethic and a brain that cannot be switched off. Other people are different. Chronic illness is not one size fits all.
#10 If you decide not to help someone with a chronic illness when they ask, that's fine. Do not, however, assume that someone else is doing what you decided not to do. If I can't get to events because I'm not that mobile right now (because of the eye meaning I temporarily have trouble seeing incoming traffic and because I walk into things at night, mainly) then I can't: don't react to this in such a way that I feel it is my personal fault for not announcing to the whole world yet again that I'm having a tough year. This is the best way to ensure I will skip all future events where you are likely to be, because why would I want to mix with people who are happier when I put myself down in public.
To put it briefly: I am perfectly intellectually capable of all the things I always have been. My physical capacity to do things away from my desk or the classroom is inconstant, but it doesn't interfere with my work. It does interfere with the egos of others. Four people this week, in fact, which is why the list of ten. Four people this week and at least a dozen since mid-August.
Do I look as if I'm incapable of writing books? My various publishers don't think so. My students like my teaching, so why should I give it up just because I have to take a bus to class rather than walk? I read between three and five hundred books a year and yet someone who reads twenty worried about my eye and whether or not I could read. I write at least 200,000 words a year and yet someone suggests I give up writing because obviously my health gets in the way. I teach a wide range of subjects to a wide range of students and yet I'm told how I should go about things with the intimation that I shouldn't. Which aspects of this make people think I am stupid or unable to work in my chosen field? None. The people concerned are looking at my allergies and my eye and developing opinions rather than listening.
I wish people would learn to see how I walk, rather than make me walk the same way as them. And that they'd stop putting words in my mouth and then claiming that the words they've invented are causing problems.
And yes, today is a bad day.
I want to make a set of rules for dealing with people who have chronic illnesses. This is my initial set of thoughts (based on recent experience):
#1 Do not assume I am stupid.
#2 Do not assume I can't make my own decisions on major and minor things without intervention from someone who is not disabled. If I ask for help or for an opinion, that's when you should offer your thoughts and opinions.
#3 Do not get me to spend all my spoons explaining things unless those explanations are important. Continuing demands for explanations are not only exhausting, they're demeaning. Match your needs for knowledge of my life with my willingness to talk: if I'm not willing, ask why before you demand more. I'm quiet about some subjects because I have very good reasons. On other subjects I'm quiet face to face, but will talk abut things here because I have insufficient spoons for the number of conversations that arose because I was willing to talk. I was waking up political (my friend Yaritji's words) because other people saw me as accessible and took over my life with their views about what I should be or how I ought to express myself. I had to be there for each and every one of them with explanations, all the time, because they didn't accept that anyone other than them had the same questions and that my capacity to answer without it damaging my life was not infinite. My life is not less important than the lives of everyone around me. I get to decide where and when I talk.
#4 Do not turn me into a client when I'm a friend. Especially don't do it without my express permission.
#5 Do not talk down to me.
#6 Do not assume that I am without flaws and will never make mistakes. I'm human and am just as capable of errors as the next human. This doesn't make me stupid or incompetent. It just means that I make mistakes from time to time, especially when stressed.
#7 Understand spoon theory. I am at a low point right now and have very few spoons. I'm measuring my time and energy out very gently. This is not always: it's just right now. I still have to earn money, celebrate Jewish New Year and a whole bunch of other daily life things. When someone simply assumes that I have unlimited energy for them (because they need it) they're limiting my capacity to do other things on days of low spoons. If you want me in your life, accept that I am a supreme font of energy and intellect, but limited by my health, which means that I have to measure my life in coffee spoons.
#8 Work is very important to me. I love it. I love my teaching and my writing and my research. Do not say "Why don't you give them up, it will be easier?" or "Why don't you put my social needs above your work?" Do not make my life decisions for me.
#9 My brain always works. I meet my work deadlines. These are constants in my life, even when everything else goes awry. These are constants: let me repeat it for it's important. My chronic illnesses however, are not constants. Spoon theory is very useful for understanding part of this except that, with me, even when I am very ill, my brain still operates. I can teach. I can think. My brain always works. It is, however, always eccentric. My intellectual life is interdisciplinary and my novels are not like other novels because of this. Pushing me into neat little holes either intellectually or physically just doesn't work. All people who have chronic illnesses are like this. All people are like this. Unique. Individual. My individuality includes an impossibly strong work ethic and a brain that cannot be switched off. Other people are different. Chronic illness is not one size fits all.
#10 If you decide not to help someone with a chronic illness when they ask, that's fine. Do not, however, assume that someone else is doing what you decided not to do. If I can't get to events because I'm not that mobile right now (because of the eye meaning I temporarily have trouble seeing incoming traffic and because I walk into things at night, mainly) then I can't: don't react to this in such a way that I feel it is my personal fault for not announcing to the whole world yet again that I'm having a tough year. This is the best way to ensure I will skip all future events where you are likely to be, because why would I want to mix with people who are happier when I put myself down in public.
To put it briefly: I am perfectly intellectually capable of all the things I always have been. My physical capacity to do things away from my desk or the classroom is inconstant, but it doesn't interfere with my work. It does interfere with the egos of others. Four people this week, in fact, which is why the list of ten. Four people this week and at least a dozen since mid-August.
Do I look as if I'm incapable of writing books? My various publishers don't think so. My students like my teaching, so why should I give it up just because I have to take a bus to class rather than walk? I read between three and five hundred books a year and yet someone who reads twenty worried about my eye and whether or not I could read. I write at least 200,000 words a year and yet someone suggests I give up writing because obviously my health gets in the way. I teach a wide range of subjects to a wide range of students and yet I'm told how I should go about things with the intimation that I shouldn't. Which aspects of this make people think I am stupid or unable to work in my chosen field? None. The people concerned are looking at my allergies and my eye and developing opinions rather than listening.
I wish people would learn to see how I walk, rather than make me walk the same way as them. And that they'd stop putting words in my mouth and then claiming that the words they've invented are causing problems.
And yes, today is a bad day.
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