Friday, March 16, 2018

Knowing No - A Response

Coyote has an interesting post here:

What is "knowing" no?

It got me thinking about something that happened recently. Dad asked me to do a chore that I really wasn't feeling up to doing, and I hesitated. Mom chimed in with "you can always say no." I immediately said no.

And then I decided to explain to Mom how the phrase "you can always say no" did not feel like an accurate phrase when Dad is asking me for chores. How, very often, I feel like saying no to doing a chore is not a safe option for me.

Housework not being done seems to trigger my Dad's depression a lot. He has relatively high standards for cleanliness - I don't know how he compares to the average, but his standards are definitely higher than mine or my brother's, and maybe higher than my Mom. And the idea that he is helpless to get and keep our household at his standard of cleanliness triggers feelings of despair and resentment in him that I really don't understand.

He also frequently expresses the feeling that he's not getting enough/any help keeping the house. Even when my parents were living together, and Mom probably did about an equal amount of cleaning to him, he would complain about not getting help cleaning. I remember arguments about it, because Mom would get offended that he was discounting the work she'd done.

So, when he asks me for help with a chore, I never know if a refusal will be fine or if it'll set him off. When I help, I don't know if my efforts will be recognized, or if he won't notice, or if he'll start complaining about something else. He also seems to vacillate between remembering that I'm autistic and having realistic expectations, or randomly assuming that my lack of cleaning is because I'm deliberately trying to force him to live in a pigsty. And periodically, he'll just start ranting about it, with no real warning.

Meanwhile, when I stay at Mom's place, my efforts get more consistent results. If she asks me to do something, I can give an honest assessment of my likelihood of being able to do it. If I forget to do it, she accepts that without much emotion. If I do it, she might not notice, but if she does, she'll definitely be happy about it. And she basically never gets into random tirades about how the house is a pigsty and she feels like just giving up.

So there's an example of what 'not knowing I can say no' feels like.

Friday, March 09, 2018

An Autistic Takes On Thirty Days of Cleaning - Part 2

When I did the 30 Days of Cleaning, my plan was to write notes about each task as I did it, and post them once a week.

That didn't last long.

I did finish the challenge, but I didn't write up most of the tasks. I only wrote until day 7.

So, along with that explanation, here's the rest of the notes:

Day 4: Scrub down fridge.
Day 5: Organize and toss expired foods.

Firstly, these two are in the wrong order for me. I was very confused thinking about how to scrub down the fridge before organizing and throwing out food, since the rotten food was in the way of where I'd be scrubbing. So when I finally made myself open up the fridge, I started tossing out rotten food instead of scrubbing.

Unfortunately, I didn't finish. I started with the bottom shelf, the worst one, and got halfway through before I had to stop. The smell was horrible, and the last straw was getting something sticky on my fingers.

Challenges: This is probably the hardest one for me so far, simply because it's so disgusting. I honestly don't know if I'll be able to finish this one today. If not, I'll try some more tomorrow, and then move on to the next task. I like working close to the ground, it's easy on my joints, but the constant up and down while tossing things out was a bit uncomfortable.

Day 5:

I got back to this job while making myself breakfast. I was surprised how much easier it was - I guess I got the worst done yesterday. I finished up tossing the rotten food from the bottom shelf, and scrubbed it with a soapy washcloth until it looked nice. There's also a drawer thingy with rotten vegetables underneath, but I'm not touching that.

Challenges: A bit of grossness, but far less than yesterday. I didn't like the up and down, but once I got to scrubbing, that was pretty good. A bit of a workout for the arms, but not painfully so.

Day 7: Wipe down walls, and wash garbage can.

For this, I washed the front door. I used a washcloth and dishwashing detergent. I did it late at night and I'm really tired, because Dad left to drop Mom off at her place and we had to make our own way home. And I'm still sleep deprived from the trip back yesterday. (I slept most of yesterday, though I still got that day's challenge done.)

Challenges: The angle was a bit uncomfortable, and I had to scrub really hard to get any noticeable result. The worst part, though, was how the water started running down my arm as I was scrubbing. Really unpleasant sensation.

Wednesday, January 03, 2018

An Autistic Takes On 30 Days of Cleaning - Part 1

For January, I'm doing the 30 Day Cleaning Challenge - adapted for my abilities, of course.

As anyone who reads my blog (or even my sidebar!) will know, I'm autistic. And this makes it a lot harder for me to keep track of and do many everyday household tasks, including most of the cleaning tasks listed in this challenge.

But I'm planning to become a mother. In fact, I want to get started when I'm 30, and I'm 28 now. So I'd better get down to it.

In the past several months, I've done various 30 day challenges, and succeeded with each. I did two different 30 day writing challenges to explore my own identity. For December, I did this 30 day meditation challenge, and I thought when I started that I'd probably screw up and miss a day, but I didn't. I'm starting to feel like this 30 day challenge format is a really good, achievable format for me - not perfection forever, which just gets me discouraged, or trying to build a streak, which gets me back to square one when I miss a day, but just spending a month focusing on working a bit every day on the same thing.

And since I see a lot of people who really don't get just how hard cleaning can be for autistic adults, I'm also going to try to write up notes for my readers on how this is going for me. This is not part of the challenge, mind you. If I miss a day, that's not a big deal, and I won't necessarily try to make up. This is just an added bonus task.

To get started, I'll post my first three days (notes generally written immediately after doing the task, in case you find the tense confusing):

Day 1: Clean microwave and oven.

Well, firstly, I'm translating 'and’ as 'or’. Cleaning the microwave was enough of a challenge, no way I'm also cleaning the stove on the same day.

I did this early morning before anyone else was up. I removed the plate thingy and washed it. The plate was really tough, lots of stuff caked on it. Then I left it in the drying rack and went to clean the microwave proper. I noticed a ring thing that went underneath the plate and pulled that out to clean, then scrubbed the microwave. I didn't do as thorough a job as with the plate, because the angle was awkward and I was getting tired, but I did scrub what I could. When I went to wash out the cloth, I cleaned the little ring, which was super easy. Then I returned to the microwave.

As I was cleaning it out, I noticed an unpleasant smell. I also ended up getting food particles on the counter in front of the microwave, so once I figured I'd gotten the microwave as clean as I could, I wiped down the counter in front as well.

When I was done, a thought occurred to me. I wasn't sure if it was safe to run the microwave before it dried out. I tried to do other things to occupy myself until my parents got up. I tried to do dishes, but I was too overloaded and spilt water on myself. So then I went to change. After changing, I decided to go and ask my parents about running the microwave and brag to them about cleaning it. As I did so, I also checked the next day's task and asked 'what are appliances?’ I'm still not sure what counts as an appliance.

Challenges: This task involved a lot of standing, both in front of the sink and the microwave. Reaching into the microwave involved bending my back in a way that caused back pain by the time I'd finished. The inside of the microwave smelled bad as I was cleaning it, and the feeling of soapy water and soapy wet washcloth on my skin also bothered me. This is especially true since my skin on one hand has a rash from the dryness of the winter air.

Day 2: Clean dishwasher and appliances. Here's how to clean your toaster.

As mentioned, I don't really know what 'appliances’ means, and we don't have a dishwasher. Plus, we spent last night in my Mom's place, and she doesn't have a toaster. (Plus, I can't really make sense of their instructions.) I have a dentist appointment, and I take anti-anxiety meds that get me too high to function afterwards, so I knew I had to do it early in the morning.

I decided last night to clean the coffee machine. Mom's been away from her place for a week, and there was rotten coffee in the machine and rotten food in the sink. I almost puked last night getting the worst of the rot down the drain. This morning, I washed out the coffee pot, then washed the coffee machine and lastly the countertop around it. I also picked up and moved some spices and garbage in that area. The garbage doesn't have a bag in it right now and I didn't have the energy to find one, so I just put the garbage on a different countertop for now.

Challenges: This involved standing and using the sink, same as the microwave. The angle was less awkward and it was done more quickly. The biggest challenge was the smell of mould, which made me gag.

Day 3: Wipe down pantry.

For this one, the biggest challenge was getting started. The task confused me, I couldn't quite think of what steps to do. Plus, I was planning on eating noodles and parmesan for breakfast, and the parmesan was in the pantry, so I thought I should combine the two tasks somehow. But the uncertainty for how to get started delayed me enough that I started getting low blood sugar, which made it worse. Plus, Mom got stressed out while getting ready for work, and my phone was low on charge, so I ended up retreating to my room to meditate and then exercising a bit, and got kind of off track.

Finally, I realized that I really needed to eat breakfast, and decided ‘never mind cleaning the pantry, let's get these noodles cooking’. And then once they were cooking, I realized maybe I could wipe down the pantry while I was waiting. I dragged over a chair to reach and did it. It was surprisingly quick and easy.

Challenges: I had to stand on a chair, but this task was so quick, that didn't bother me much at all. The biggest challenge was getting started on it, because I got it tangled in my mind with preparing breakfast, and the combination was too complicated for me.

Friday, November 17, 2017

My Future

OK, parents of autistic adults who can't live independently.

You think it's scary, imagining what will happen to your child when you die? Imagine how scary it is for them.

I'm 28 and I live with my parents, because although I'm smart and capable in many ways, self-care is not one of those ways. I have severe executive dysfunction, and I work so hard with so little result.

I see how much I'd need to do to live on my own, and I know how far I am from being able to do it. And it terrifies me.

I can't find help, because I'm smart and talkative and articulate, and no one believes that a developmental disability can make you as disabled as I am without affecting intelligence or communication skills. Even if I could, most of the programs available don't pass the midnight burrito test, and I barely survived the public school system. I can't live like that.

And you know what, parents of autistics? Most of you aren't helping. You're complaining about what a burden your children are, you're calling them low functioning and saying people like me don't need help and people like them don't need choices, you're focusing on early intervention and quack treatments and pretending that your kids will stop being autistic if you try hard enough, you're setting up the programs that don't meet the burrito test, you're putting your heads in the sand and pretending it's not a problem, and a few of you are even talking about killing your children so they don't outlive you.

There are a few parents who are standing by us in the fight, and I appreciate you guys. But it's not overstating things to say that some of our worst enemies, as autistic people, are parents of autistics.

And it makes me so furious, because you guys have so much power. I'm a disabled adult who doesn’t know how to run things myself or convince others to help. I have very little power to help myself, much less others. But you guys are strong. And instead of being our biggest allies, you're our worst enemies.

Friday, November 03, 2017

Couple Privilege Does Exist: A Response to Lola Pheonix

I recently came across this article, Five reasons 'Couple privilege' doesn't exist. The writer of this article, Lola Pheonix, seems to be coming at the question of couple privilege from a polyamorous perspective, which is different from the experience of aromantic people. I'll try to address both perspectives, although it's important to keep in mind that I'm not poly and I have essentially no experience with poly relationships. I also bring up disability quite a bit, because my initial learning about privilege was largely in the context of disability.

They* quote Franklin Veaux saying privilege is "any advantage that one person or group has over another that hasn’t been specifically earned", and go on to disagree with that definition, stating that privilege has to be based on a societal system that deliberately benefits a certain group over others.

I disagree with both definitions, actually, but I like Franklin Veaux's definition better. I'd simply amend it to say that this advantage results from social systems, not purely from biological differences. For example, being able to walk isn't a privilege, it's just a biological reality. But being able to count on buildings having entrances designed for people like you to enter easily is a privilege given to people who can walk (we don't have any buildings with entrances that assume the ability to fly, for example).

Lola Pheonix's definition of privilege, meanwhile, is overly narrow. It excludes discussion of privilege systems affecting groups that are not widely known & recognised to exist by society.

For example, many buildings have flourescent lighting, which can be an accessibility issue for people with epilepsy, migraines, or sensory processing issues. I have yet to encounter anyone who deliberately choose flourescent over other options because of a hatred for people with those disabilities. Instead, the vast majority of flourescent lights were installed by people and organizations who simply didn't consider the potential accessibility issues that could be relevant to their choice of lighting.

I, personally, see being able to design and visit buildings without worrying about the lighting causing seizures or similar negative effects as an example of abled privilege. But Lola's definition wouldn't count it.

They then discuss 'couple's privilege' as if it consists solely of how poly relationships are treated in personal relationships. Setting aside the question of whether systematic patterns of being insulted for a certain identity can count as oppression by itself, that's far from the only effect of couple's privilege. There's a reason gay couples pushed so hard for legal recognition of their marriages, and that's because it comes with a long list of legal benefits. These benefits are not available to unmarried partners, including all but one of a polyamorous person's partners. Nor are they necessarily available for the primary relationships of aromantic people.

For example, although my brother and parents have certain rights by virtue of being my family, they could potentially lose custody of my child to my sperm donor if I were to die before my child grew up. This is especially true if I don't make the sperm donor sign papers beforehand. (As I wouldn't if the pregnancy wasn't planned, for example.) And only recently did Canada first allow a mother's best friend to undergo a second-parent adoption, representing the first time a second-parent adoption was granted to a non-romantic partner. Similarly, I shudder to think of the legal battle if a polycule had a custody dispute. My guess is that any partner who wasn't married to the child's parents or biologically related to the child would be at a severe disadvantage, no matter the relationship to the child.

And speaking of gay couples, next, they bring up how many of these couple's privileges aren't available to non-heterosexual couples. I'll acknowledge that point, although I'd argue it soon won't be true anymore. But just because a certain set of privileges aren't afforded to everyone with a certain identity doesn't mean that identity isn't privileged. After all, trans people can be straight, but they certainly don't access straight privilege. Similarly, gay couples (and other queer couples) being denied couple's privilege doesn't mean that heterosexual couples can't be privileged over single heterosexuals, polyamorous heterosexuals or heterosexuals who aren't able to marry for various reasons (eg threat of losing welfare or disability payments).

Next, they mention that many of these privileges aren't unique to couples. This, too, is not really relevant. There is a lot of overlap between different systems of oppression. Both trans and disabled people often get treated as 'self-narrating zoo exhibits' and asked overly personal questions by strangers. POC, women and physically disabled people all tend to get touched intrusively and nonconsensually by strangers. Both POC and invisibly disabled people (especially neurodiverse or mentally ill people) are at higher risk from police violence. Trans women, POC and disabled people are all at greater risk of being murdered and have our killers receive lighter sentences. Single people, LGBT people and disabled people are all likely to be denied the right to adopt for reasons that don't affect our actual ability to parent. The list goes on. If we excluded any oppression shared by multiple distinct groups from privilege discussions, we'd have virtually nothing to discuss.

They also mention that choosing to prioritise certain relationships over others isn't oppression. I agree. If you're treating your partner of 5 years who you live with as more important than your LDR with a partner for 3 years, that's just human nature. And if your friends prioritise your partners the same way, that's probably just because they know one partner better. We can't, and shouldn't, treat all people as if they were equally important to our lives, and that includes poly partners.

But there's a big difference between inviting your friend's spouse but not their girlfriend because you know their spouse better, or you don't get along with their girlfriend, and doing so purely because they're married. And similarly, there's a difference between inviting your own spouse but not your girlfriend because she's out of town, or doesn't like those kinds of events, or you'd simply rather bring your spouse; and doing so because you fear negative reactions to coming out as poly, or feel that she doesn't belong there because she's not the one married to you.

They then discuss binarism. As a mostly cisgender woman, I don't feel qualified to comment on whether or not binarism exists, although I will mention that I've seen a lot of disagreement among non-binary people about this question. I would also be interested to hear their thoughts on 'truscum', and how that relates to binarism. But I digress.

They also discuss how visibility doesn't lead to acceptance. As an autistic person, I have an interesting experience with being both hypervisible and invisible, and I can attest that both are terrible. Hypervisibility isn't the same as visibility, though. Visibility, to me, means being able to access positive self-representation and narratives that help you to develop a sense of yourself as a member of a category of people - being able to see yourself represented and included in society's construction of what 'protagonists' are like. And caricatures and stereotypes are no better than the complete lack of representation, and can in some cases be worse.

I also feel like their discussion of privilege treats it as a binary, which it certainly isn't. A nondisabled poor trans woman of color has abled privilege over me, but I have class, cis and white privilege over her, making me almost certainly more privileged overall. And the same could be said for pretty much any axis of privilege. People who are privileged in most, but not all aspects will generally be more privileged overall than people who are privileged in only a few aspects. This doesn't negate the reality of any one axis of privilege.

Overall, I get the feeling we probably agree more than we disagree.

* I don't know what pronouns Lola prefers, so I'm using 'they/them' as the most neutral option.

Friday, October 20, 2017

Autism, Homeschooling and Socialization

I came across this article recently. It's a parent of an autistic kid reporting on a conversation with another parent about why she doesn't homeschool.

First, let me say that the other parent in the conversation is out of line. Homeschooling or not isn't about how much you love your child, and accusing a parent of not loving their child because they won't homeschool is not acceptable.

However, this woman's reasons for not homeschooling really don't hold up, in my opinion. She mentions two reasons - one, she doesn't want to do it, and two, well...
Sam NEEDS more social interaction, not less
Ugh. This reasoning is wrong on several levels.

First, you totally can work in plenty of positive social opportunities while homeschooling. Extra-curricular activities, social groups, just going out somewhere to do something...

In fact, there's some research suggesting homeschooled kids have better social skills than regularly schooled kids.

My theory is that it's for the same reason that having siblings - but not a twin - boosts theory of mind. Interacting with kids of different ages than yourself boosts social skills. Regular schooled kids spend most of their time in age-segregated groups, while homeschooled children's social interactions tend to be in age-mixed groups.

Unfortunately, no one has studied the effects of these environmental factors on autistic kids, but in the absence of data, it's more reasonable to assume similarity than difference here.

Secondly, autistic kids are at high risk of being bullied. This study found that 63% of autistic kids had been bullied (roughly twice as often as NT children), with mainstreamed children being at higher risk than children in special education settings.

Bullying is never positive. Research has documented that victims of bullying are prone to low self-esteem, chronic anxiety and depression, psychosomatic health problems, suicidal ideation, poorer grades, greater likelihood of dropping out, self-injury and drug abuse.

The kind of social interaction experienced matters more than how much you experience overall. If your child is bullied, it could damage their mental health, hurt their physical health, impede their education, or even kill them. No one needs bullying.

Friday, October 13, 2017

Almost Human

Recently, I've been fascinated by human evolution, and the different species that were closely related to us.

We humans like to think we're special, so different from all the other species. We tend to see it in black-and-white – either you are a person, or you aren't. But in human evolution, it wasn't black-and-white. There was no one point in time when we became human. Instead, different traits of humanity appeared at different times, and depending on what you think is most crucial, you'd draw the line at different points. Compassion for others and basic tool use were most likely present before our ancestors split off from chimps and bonobos. Upright walking and smaller jaws distinguished Lucy and other australopithecines from the other apes, but their brain was mostly unchanged. Then brain sizes increased, and the first stone tools were found, skillfully crafted by homo habilis. At first, our ancestors only made one kind of tool, but then we had an explosion of tool-making diversity, and we started to make technological advancement, with a steady improvement in tool designs over time. Then, deliberate burials, carved statues and cave paintings began to appear, suggesting the birth of imagination and religion.

There is a lot of disagreement over when certain crucial human behaviours appeared. It used to be thought that homo habilis was the first hominid to make and use tools, until we discovered that many primates make simple tools, such as stripping a stem of leaves to fish for termites. There has been a lot of debate about whether creativity and deliberate burial were unique to homo sapiens or could also be seen in Neanderthals and our common ancestor homo heidelbergensis. (My impression, from the research, is that all three species did this, but homo sapiens did it more extensively.) There have been a lot of debates about language, when and how it first emerged. We used to think Neanderthals didn't talk, but genetic evidence suggests they did (and may have even used a tonal language!). Now, the bigger question is whether homo erectus could talk, and how well.

This debate, for many people, involves an element of looking for the crucial step, the crucial point at which we became 'fully human'. In this way, it mirrors how many people think about severely disabled people – where is the line between a person who struggles with X and Y and someone who is not really a person anymore?

When homo sapiens first appeared, we shared our world with four other hominid species – Neanderthals, Denisovans, homo erectus and homo floresciensis (nicknamed 'hobbits'). We're not sure where Denisovans fit in (one suggestion is that they were a cousin to Neanderthals), but both us and Neanderthals descended from homo heidelbergensis, which descended from homo erectus. Homo floresciensis, who were tiny little guys, were another branch off of homo erectus.

All of these species lived fairly similar lives, making tools, eating a mix of meat and plant products, living in small, tight-knit social groups. Two of these species were actually close enough that we could produce fertile offspring, although probably with difficulty. (DNA research suggests that only daughters with Neanderthal fathers and homo sapiens mothers contributed to the small percentage of Neanderthal DNA in all non-African people. Their brothers were probably infertile, and the reverse crossing may not have been viable or may have only produced sterile offspring.)

I sometimes wonder how we might see ourselves and other species differently, if those other hominids had survived as separate populations. If, as in many fantasy stories, we shared our world with other species who are different and yet so similar, would we see them as people, or as talking animals? Would we even see such a divide? Would we still think of ourselves as so special and unique, if our closest relatives were still around to show us how non-unique we were? Or would we just move the line over a bit?

It used to be that we did not see personhood in such a black-and-white way. In the medieval era, a nobleman was more of a 'person' than his wife, and both of them were more 'people' than their servants were. Their servants, in turn, were more 'people' than a different ethnic group would be. Personhood was a spectrum. Over time, this idea fell out of favour, mainly because it led to some vicious prejudice.

But in some ways, our current black-and-white divide isn't that good a concept to replace it with. I don't think the same ethical standards apply to me as to my cat. If we saw all species as having the same moral rights, then my cat would be no different from Jeffrey Dahmer – both of them killed and ate other living creatures, not because they had to do so to survive, but because they enjoyed it. But I think a cat killing and eating mice for fun is very different from a human killing and eating another human for fun. But where it gets messy is when the difference is less clear. If we didn't see Neanderthals as people, how would we see their children? How much Neanderthal ancestry would you need, before you weren't considered a person? (Incidentally, I have 3% Neanderthal ancestry, which is the same percentage I'd have if I had one great-great-great grandparent who was a Neanderthal.) Well, let's say we did see Neanderthals as people. What about homo erectus? They had an average brain size about 2/3rds of our own. There's no evidence that they buried their dead, or showed any sign of imagination. There's a lot of debate about whether they used language or not. If they did use language, they'd have conveyed much simpler ideas, and may have had a simpler language structure. And yet they made tools and may have used fire to cook their food. And they loved their families, cared for the sick, injured or disabled, and worked together to achieve common goals. It would be so interesting, getting to know a homo erectus. But for many people, it would probably also be quite threatening. They were so similar to us, but at the same time, they were so different. In speciation terms, there is no evidence that we successfully interbred with them – either we couldn't interbreed at all, or all offspring that resulted were sterile. But a homo sapiens and a homo erectus could certainly become friends, if both were open to the possibility. What kind of friendship would that have been?