Amber Bird | Blog

If you haven’t already, please read the introduction post. That will give you context for this page.

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First, in case it hasn’t come up for you anywhere before, I’m going to suggest you read this explanation of what we mean when we talk about spoons in the context of illness and personal capacity. I will surely mention spoons, but I won’t be explaining the theory of spoons. You might also find this post on different types of spoons interesting, or at least a bit helpful in understanding this post.

Though not the last item on the Not Ashamed list, because I wrote a few things out of order, this is the last Not Ashamed essay I’m writing and publishing. As a fan of personal essays (at least when I’m the one writing), I’ve mainly enjoyed this. I love both the time spent in introspection and self-consideration, as well as the time spent writing. Fortunately, this looks to be a long post, so you will feel like you totally got your fill of me. Heh!

This particular post has been rewritten more times than any other, and I hope that I’m still comfortable with what I choose to say here after I publish.

Some context: I feel a bit uncomfortable writing about this because I know people whose invisible illnesses seem more impacting and unpleasant than mine. So, let me be clear that this isn’t a “who’s most ill” contest or anything like that and that, at least from my perspective, I’ve got it relatively easy on this count. However, the internet is full of posts by people with invisible illness, and you can google those and have a chance to put yourself in their shoes if you feel like that’s useful. (I, of course, feel like it can help us be more compassionate to do such things, so I’m voting that you do.)

I also want to note that I’m uncomfortable writing about this because it rubs up against my desire never to give myself victim status, as well as the fact that one of my invisible illnesses isn’t something I really consider an illness (autism). It is too easy, it seems, to view yourself as ill and let that drop you into a mire of unhappiness and victimisation and so forth. However, I also feel like, at least for me, part of my learning curve has been to figure out how to be not-typical in a world that mainly makes token efforts to appear inclusive. And part of that, one of the hardest parts, has been getting myself to learn to work within the framework of my actual capacity rather than pushing past that, which is unhealthy and can make things worse. Sometimes, for me, thinking of even the things I wouldn’t change (like autism) as an invisible illness helps me to look for more compassionate approaches to life. If I had a brutal case of the flu, I probably wouldn’t berate myself for not managing what “normal” people do, nor would I actually push myself to even try to do things that are clearly just going to keep me sick or that are clearly outside my capacity. It’s not an exact parallel, but it’s one of the main reasons (the other is for solidarity with people who, I can see, have concerns similar to mine) that I don’t try to completely reject this label.

With all the discomfort, I’ll not ignore my own privacy issues; I’m not going to give you a list (though you can look at the Not Ashamed list and figure that being autistic and bi-polar go on that list). In reality, my approach is that I don’t generally care to talk about my limits outside of specific moments where I’m trying to honour my body or mind’s atypical needs and limits.

Okay. I think the last bit of context-giving is to just paste in some stuff from this page on a site that promote Invisible Illness Awareness Week, because I know some of you won’t go looking for this information (though it would be great for you to read that page; it’s full of really interesting and eye-opening stats on invisible illness). From that page:

• Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)
• About one in four adults suffer from a diagnosable mental disorder in a given year.
• 9 million people are cancer survivors with various side effects from treatment who may feel as though they have a chronic condition.
• Current statistics on autism indicate that more children will be diagnosed with autism this year than cancer, diabetes, Downs Syndrome and AIDS combined, approximately 1 in 150 children.

So, since it’s not clear from those bullets, I want to point out that the cold you are discreetly treating isn’t an invisible illness. Invisible illnesses are chronic; they’re not going anywhere. Some of them will progress and result in an illness no longer being invisible (my mum’s Multiple Sclerosis was an invisible illness until it progressed to a point where she needed assistive devices). They can have range, from the chronic insomnia that others think of as just a hassle (though even science will tell you it’s much more than that) to something famously painful like lupus, but all of them have an impact on quality of life.

But the invisibility causes problems. You see, if people can’t see that you have an illness of some kind, they assume that you can do all the things they consider reasonable for a typical person. And that includes assuming you can do those things as frequently and to the same extent. If your illness isn’t visible, people can get Really Very Nasty when you fail to live up to their expectations. Even if you tell them that you’ve got something happening that makes you not-actually-typical.

As far as I can tell, the nastiness comes from two places:

1. They can’t see your illness so they think you’re probably lying. It’s not that you don’t have the spoons; it’s that you are a liar.
2. They think you are just being lazy, using something they can’t even see as an excuse for special treatment.

I know people who lie or exaggerate, but I know far more people who push themselves way past an actual healthy point just trying to live the life they want or trying to keep from being treated poorly by other people. I’ve had times that I was out of spoons for weeks, a complete physical and mental mess, but I still kept pushing because I hated feeling limited and because feeling limited and having the scorn of people who claim to love you piled on is a seriously miserable way to live. (And no wonder there are studies that show that, for both those with visible and invisible illnesses, there are high divorce rates and other markers of troubles with friendships and romantic relationships.)

In an effort to be physically, mentally, and emotionally healthier, and because I really do like myself and believe in treating myself as kindly as I’d treat a true friend, I realised I had to make some changes.

I had a difficult but honest bit of introspection and self-consideration, during which I admitted the things that aren’t ideal about my health or things that weren’t as I wanted, even if I was hesitant to call my wants objectively ideal. I also looked at the obvious things that were limited by that.

I assessed people in my life and decided that I only have the spoons for people who treat me like I’d treat a true friend. I try to limit the time I give to other people. I talk myself out of feeling bad when someone doesn’t believe my truth. (And, if someone keeps treating me like they suspect I’m a liar or just looking for special treatment that I probably don’t need, I will bump them to the “limited time” list.)

I made changes in my life (more changes; I hadn’t been wantonly ignoring my needs) that I’d been resisting that I believe will help me keep my maximum spoon capacity from diminishing and will help me spend fewer unnecessary spoons.

I also tried to make a really clear assessment of which areas might have more spoons than others. You know what I can do for hours and hours with little spoon expenditure? Ponder and analyse myself and my connections to the world and try to pull some meaning or use or art from that. No wonder I’ve always been inclined towards that.

I’ve also got unlimited mental spoons for typing up words…emails and blogs and novels and such. But it’s specifically typing. (Which makes sense, because our brain uses different pieces for typing vs handwriting.)

Unfortunately, the physical spoons necessary for typing up words can vary drastically. One of my invisible illnesses is some persistent tendinitis in both shoulders, both elbows, and both wrists (it shouldn’t last for years, but the poor healthcare system in this country means I can’t actually afford to pursue any further diagnosis or action). On good days, it’s all a dull ache. Quiet enough that I’ve gotten used to it and I know I can handle it. If I keep busy, it’s a minor mental thread. But as soon as I try to take any kind of a break, and definitely whenever I try to sleep, it’s front and centre. On not-good days, or even on days that started good, it can flare up into excruciating pain. It can leave me unable to type, play guitar, pour myself a glass of water, lift a skillet from the stove, etc. And pain is exhausting, even if you’re just lying around…it’s a trickle (sometimes a steady gushing stream) of energy…so you’re in pain and you’re beyond-tired. And you feel kind of horrible because you can’t even get yourself a glass of water or cook yourself an egg sandwich. Which sounds really sad.

If I didn’t have limited physical spoons, I could probably post some kind of blog daily, in addition to staying on top of email and writing my next book. Which means that there’s a persistent emotional toll (frustration, disappointment, etc) that adds to my exhaustion. I have rare spots of making peace with the limits, but my brain is constantly churning out ideas it needs me to write and I would really like to get it all typed and finalised and why won’t my arms just cooperate?

(Before someone jumps in suggesting voice to text stuff…that also has issues. Unless something totally new comes into being, please trust that I love research and I love not being limited and I have looked into all the possible solutions for all my problems. When you make really obvious suggestions like that, it feels like you’re suggesting I wasn’t smart enough to consider it. And insulting my intelligence is not a great thing to do.)

But we’re here to talk about shame, about how others would like me to feel ashamed of not being able to live up to their expectations of what a typical person can do.

If you’re one of those rare people who does play it up, exaggerate, fake it, etc in order to get special privileges…you do realise that every single person who knows you do that is now going to be suspicious of and possibly unkind to anyone else who has an invisible illness, right? Honestly, shame on you. Shame on you for making it harder for people for whom “normal” life is already harder.

On the other hand…

I am not ashamed that my body and brain aren’t typical, that they don’t function like they would be expected to. I can be frustrated and disappointed, but I am not ashamed. (Also, just in case it’s coming across glum…whilst I do experience negative emotions, I’m still a positive person and find joy in my life. And I credit part of that to the fact that I don’t carry shame over this.)

I am not ashamed that, rather than try to batter myself into living a typical life, that rather than treating myself like an enemy to abuse, I know myself and honour myself and respect my limitations.

(Yeah, sure, we can talk about how trying to expand your limits can be healthy, but that’s not advice that applies to every situation. Because, sometimes, trying to expand your limits can actually tighten them up and leave you permanently worse than before. And unless you are my doctor or an accredited physical therapist or something like that, what makes you think you know which of my limits to push? Even if we have the same condition, each person is unique enough in their experience that you really don’t know what’s best for me.)

Now, my brain has just had some thoughts on the next book, and I want to get them down before my Using My Arms spoons are all spent for the day.

I hope that, at the very least, reading one (or more) of the Not Ashamed issues has helped you throw off some of your own shame. That stuff is rotten and doesn’t help anything. And so much of it is thrown at situations and characteristics that it’s absolutely unnecessary to feel ashamed about. Plus, life is sweeter when, instead of dragging around unnecessary shame, you’re loving what’s good, working on what’s not good, and learning to love yourself no matter the situation. I wish you the best of luck in pursuing that.

xx

Cross-posted to the Not Ashamed section of my site (so that it’s all tidy).

If you haven’t already, please read the introduction post. That will give you context for this page.

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This is the second post about the shame thrown at me (and others) based on economic situations. The first one was pretty obvious; poor shaming has probably been going on since humans came into existence. But, here’s the thing…

At some point, long before I was born, the poor people got sick of being told they were worth less. They also realised that they were totally worth as much as not-poor people. In fact, they started to suppose that they likely had some awesome qualities that not-poor people could never hope to have. Honestly, it’s a pretty common thing for a mistreated group of people to compensate for the low self-worth that was inflicted on them whilst being mistreated by convincing themselves that, in fact, they are the better people.

I’m not judging, just noting that.

So, no surprise that poor people started to decide that, in fact, they were the better people. And, at some point, I felt that way too. Especially once I was living on my own and I was poor because of me, not my parents. I was poor but I was making it. Go me! And I wasn’t held back by the negative, stereotypical traits that obviously belonged to not-poor people. It soothed the parts of me that felt bad about being poor and the parts that had been told I should feel bad about being poor…

I know, because we had conversations, that I wasn’t the only person who ever felt that way.

There have been wee, short-lived pockets of being a little well-off (at least by my standards). And, the first time, I actually felt bad about it. I was now the not-poor person. I considered purposefully ruining that, as if my economic situation determined by personality. (Yes, I know, studies do show trends, but I’m a fan of not being defined by stereotypes.)

And I’ve had people who were poor, when I wasn’t, being nasty to me because I was now one of the not-poor. But I didn’t respond because I actually understood where they were coming from, having been poor and judgemental myself plenty of times in the past.

So, here’s my final word on judgement based on economic situation:

Whether you are rich or poor, what matters is your behaviour. It’s your actions, not your money (or lack thereof), that determine whether or not you’re a good person. All humans are of equal intrinsic worth and full of great possibility.

I’ve now known people who were both good and horrible at all sorts of points on the economic spectrum.

I will never again judge myself or anyone else based on their net worth. And I won’t let anyone else make me feel bad about myself based on what money I do or don’t have. There are so many other things to judge me on…

Cross-posted to the Not Ashamed section of my site (so that it’s all tidy).

If you haven’t already, please read the introduction post. That will give you context for this page.

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Feminist: an advocate of social, political, legal, and economic rights for women equal to those of men.

That’s the dictionary definition and the one that every feminist I know would agree is correct. We might have different ideas about how to procure those rights, but it is inherent in the definition that this is about equality, not about subjugating men (the way they’ve subjugated women for most of history).

Anyone who says that it means something else is wrong. If they aren’t feminists or are opposed to feminists, well, why are you letting them define what feminists are? And if they claim to be feminists…they might be adding their own spin, and their spin doesn’t apply to every other one of us who wears this label without shame.

I can’t even fathom the logic of expecting me to be ashamed of wanting myself, of wanting all humans, to have equal rights.

I’ve been very lucky in my life to have parents who did their best to raise me to believe that my worth, and the rights and respect I deserved, was not tied to my genitals. That I was as capable and deserving as my brothers.

I’ve had male friends all through my life, many of whom have not treated me as anything less than their male friends.

If you don’t believe in feminism, I know better than to believe my personal essay will change your mind. I’m not going to waste my time saying things here that others have already said.

Instead, I want to talk to people who believe in feminism but have never heard or taken time to find the definition of the phrase “intersectional feminism” or “intersectionality.” Again, there are plenty of essays online, so I’m going to paste in a definition, and then I’m going to say a little about why I care.

Intersectional feminism: The view that women experience oppression in varying configurations and in varying degrees of intensity. Cultural patterns of oppression are not only interrelated, but are bound together and influenced by the intersectional systems of society. Examples of this include race, gender, class, ability, and ethnicity.

Intersectionality: A concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another.

I have things that work against me in life. I’m not straight, well off, cis, or male. But I am white-skinned, fluent in the primary language of the country in which I live (and without an accent), and my parents made sure I was educated as best they could manage. So, that tells you about the mix of things that are part of the configuration of my oppression. Yes, that’s a dramatic word, but not a word that feels wrong as often as I’d like.

However, there are also a few things that I have going for me (as listed in the above paragraph). And some of those are huge. The colour of my skin? Huge. Women who are arguably exactly like me but whose skin is not white have a measurably greater weight of oppression.

And if I truly mean, in my feminism, that I believe in equal rights for all people, that has to include people of colour, people with accents or who don’t speak the language of the country in which they live, and uneducated people. I have to take their experiences into account, not just leave room for them in my feminism but make room for them.

That means I will be constantly trying to learn, to keep an eye on my assumptions, to listen to the voices of those who aren’t like me. I feel like I’ve seen a lot and known a lot of different people in my life, but that doesn’t mean I know all I need to know to make sure that my efforts are for all people.

I’ll give you an example before I go. This is something I only learned this autumn, in spite of actually having had multiple black female friends. Just knowing someone socially doesn’t mean I know their context. For instance, I didn’t realise that black women in so-called white cultures have traditionally been de-feminised. They have typically been portrayed as masculine or as too beastly (usually as sexual beasts) to be feminine or pretty. So, whilst many white feminists are often leaning towards non-feminine appearance or masculine behaviours and roles as part of how they try to throw off the oppression that comes with being female gendered, being allowed to be feminine is something that black feminists have had to fight for. (At least that’s how it was explained to me. My apologies if I’ve misunderstood or over-simplified.)

Which means that feminists (white feminists) who look down on other feminists who wear dresses or makeup aren’t taking the context of black women into account in their efforts. (This is also part of why shows like How To Get Away With Murder and Scandal portraying strong, capable, pretty black women is so awesome.)

My main approach to intersectionality in feminism, given I know that I don’t know everything that is relevant to everyone’s feminism, is to believe in choices. That it’s not about all of us having to be the same or having to take advantage of all the same opportunities. For me, it’s about having the options. The option to dress in a more masculine or feminine way. The option to have a job outside the home or to be a housewife. And so forth.

That won’t solve all the problems that come up with trying to be intersectional, but it’s how I start.

And, in this effort, there’s no room for shame. Because I am not ashamed that I’m female, nor am I ashamed to believe that being female should not give me fewer rights or opportunities than males. I’m only ashamed when I lose sight of the importance of intersectionality, because I really do believe in the equal worth and, therefore, equal rights of all people.

Cross-posted to the Not Ashamed section of my site (so that it’s all tidy).