kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
[personal profile] kaberett
[Content notes: abuse, disability]

I'm autistic and I'm an abuse survivor; I have learned, over and over, that people are a system, and if I can model them well enough I might be okay.

So I learned to model them; I learned to game them; and because I am me, I can do this really well, and really very consciously.

This doesn't make me evil. When I was thirteen my only rule for myself was that I would not hurt people with information they had entrusted to me, specifically; and, yes, the implicit "but anything else is fair game" rang loud and clear; and, yes, it was a rule I needed, but. But.

Saturday night, I managed to articulate some of how I decide whether to deploy this skillset today, and it goes a bit like this: how am I feeling? what do I think the problem is? what do I think potential solutions are? do I trust the person or people I'm talking with to treat me with respect and kindness? are they in a position of relative power in this situation?

I think it's important to say all of this to start with.

***


I'm a crip, yes, but I'm not helpless or angelic or innocent, and nor are the rest of us. We have the capacity to wield our care needs as a weapon, and I don't for a second intend to deny that, but: this isn't that people with disabilities are abusive; it's that some abusers are disabled, and that can become a tool.

But care needs aren't the only thing that can be turned into a weapon: care providers can play at that game, too.

Recently, I've seen a lot of links to articles along the lines of How to support a partner with depression, and I've read a lot of accompanying discussions. Many of them have (rightly!) drawn attention to the intersection of caring-for-others with self-care; the ways in which many of us will always be ill, will always need care, and how this can be an insidious and apparently unstoppable drain on care providers. But... I've seen the other side of this, too, and I'm incredibly uncomfortable around any argument to the tune that any relationship with a care component is inevitably toxic.

***


I hate asking for help. There are somewhere upwards of ten people who've made it very clear to me that if I'd benefit from talking to someone, I can call them at any time. The last time I took one up on this was sometime in 2011; it was 10pm on a Sunday and I had had the kind of week where I'd ended up locking myself in the accessible (gender-neutral) toilet in my department and curled up on the floor crying my eyes out. I try to minimise the impact of my illnesses on other people, with significant cost to myself. Two-three weeks ago, I got to the end of a counselling session and apologisd to my counsellor for it having been fairly heavy going.

I hate asking for help.

And yet: I can't remove from my CV the year in which I went thoroughly mad. And yet: there is the DLA application, in which one needs must report in excruciating and humiliating detail one's care needs. And yet: no matter how hard I try, I can't hide from people that I take a handful of pills four times a day; that I need to eat regular meals and have reliable access to emergency blood sugar; that I need to average ten hours' sleep a night; that five hours into a conference my ability to pass for allistic is shot to hell; that I need to check out of conversations due to pain spikes regularly; that I sometimes stop being able to move.

People maliciously withholding care they've agreed to provide - as a means of control - is, obviously, abusive. More insidious, though, is gaslighting someone into believing that they need more care than they actually do: that they're more impaired, less competent, less capable of independence. This is a violence.

***


People with disabilities have developed frameworks to articulate and discuss our care needs, and usually very clearly: because even when you spell things out, the folk you need to ask will decide that they know best and will ignore you in favour of doing something that is, at best, irritating. We hate asking, but we don't have any other option.

I hate knowing that I am hard work. I hate knowing that I am "high maintenance". I hate that I am an imposition, a "benefits scrounger", the undeserving -- but there is nothing I can do to alter the material and concrete fact that I need help.

To know that my requests are perceived as threatening and unsafe - because of their clarity; because of my framework - is horrifying and it is exhausting and it is terrifying, not least because of my experiences of people using their positions of care relative to me to abuse me.

***


But what it means to say that relationships (platonic, romantic, or otherwise) with a care component are inevitably toxic, inevitably doomed, is that I am deemed Unpeople. It means that my relationships are devalued; it means telling me that I am poison, that I am damaging, that the best thing I can do is to refuse to let other people into my life. It ignores the care work I do in my turn (it is worth noting that many care providers are themselves disabled). It says I am inherently abusive.

***


I believe we can do better in this conversation.

(no subject)

Date: 2014-03-10 12:22 am (UTC)
alexseanchai: Blue and purple lightning (Default)
From: [personal profile] alexseanchai
Letting you know I read this. No idea what to say to any of it, though.

(no subject)

Date: 2014-03-10 12:35 am (UTC)
jelazakazone: black squid on a variegated red background (Default)
From: [personal profile] jelazakazone
Again, so much with the chewy. Nothing to articulate at this point. Keep talking.

(no subject)

Date: 2014-03-10 01:38 am (UTC)
lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
From: [personal profile] lizcommotion
+1

(no subject)

Date: 2014-03-10 12:40 am (UTC)
joshuaorrizonte: (Default)
From: [personal profile] joshuaorrizonte
This really resonated with me. I don't know that I have a right to feel that it resonates with me... but I agree with everything you said.

Not only can we do better in this conversation... we need to.

(no subject)

Date: 2014-03-10 12:47 am (UTC)
redbird: closeup of me drinking tea (Default)
From: [personal profile] redbird
Yes, I think we can do better in this conversation. And, as with a number of other conversations, the nontrivial first step is for the people in the conversation to recognize that it needs improvement. I am fairly sure I could do better at this one, in both of these (broadly delineated) roles.

(no subject)

Date: 2014-03-10 01:40 am (UTC)
From: [personal profile] khronos_keeper
This is something I struggle with on a number of levels to, and I really feel where you're coming from. For a number of reasons, I'm pretty much still at the starting gate irt this type of conversation.

The possibility of disability is very new to me, but very immediate (and honestly something that needs to be explored more for my safety and the safety of others), and I am still caught in the sensation of becoming Unpeople, as you put it. Partly because I would have to rely on people so much.

On the other hand, I have had at least two friendships with people who have mental illnesses that I've had to break off for my own well-being. I feel awful for not being able to meet their needs and for losing their company, and I feel like that attitude is also probably a problem.

Overall I feel like the whole conversation could be better, yeah. :/

(no subject)

Date: 2014-03-10 02:33 am (UTC)
batdina: bucky barnes the winter soldier (Default)
From: [personal profile] batdina
People maliciously withholding care they've agreed to provide - as a means of control - is, obviously, abusive.

words that I've been looking for for more than two decades now. wow.

and also, you rock and thank you for making me think. I'm thinking I may start writing soon as a result of you making me think. anything that makes me write is by my personal definition, a very good thing.

(no subject)

Date: 2014-03-10 03:09 am (UTC)
fascination: Orange flowers waving in the wind. (Orange flowers.)
From: [personal profile] fascination
Firstly, I think... yes. It's very difficult when you've learnt you're 'an imposition' because of a disability or because of emotional needs or both. I understand this so very much - thanks for this post; it's massively relatable.

Secondly, I think the 'benefits scrounger' narrative that disabled people are so frequently tagged with is a load of rubbish. I think you know that too, but so many of us internalise it and think it's true just because people hear it so much. The political climate in a lot of 'anglo' countries is soaked with it these days too - they're all using those arguments whilst living, breathing people learn to devalue themselves because their countries don't value them.

(no subject)

Date: 2014-03-10 04:20 am (UTC)
shehasathree: (Default)
From: [personal profile] shehasathree
<333

(no subject)

Date: 2014-03-10 04:31 am (UTC)
azurelunatic: A glittery black pin badge with a blue holographic star in the middle. (Default)
From: [personal profile] azurelunatic
The picture I get in my head when someone says something shaped like "unhealthy relationship with care component" is a situation where someone who needs care is in a relationship with someone upon whom they are solely dependent on for care. That is a simplistic picture that denies the reality of people who need care having multiple thriving relationships (familial, friendship, romantic, professional) and the likelihood of the care being spread between their various connections, even if one person is their primary caregiver. "Sole" is in no way the same as "primary".

If someone is in such extreme isolation that they have no other possible caregivers than just the one, such that if something were to happen to their sole caregiver that they would be completely screwed over and without recourse, that situation is still bad without adding the possibility of sexual and/or romantic coercion to it.

Conversely, if someone has a thriving social network containing many caregivers or potential caregivers, there is less at stake if a romantic or sexual relationship with one of them goes sour: that person would be in a better position to free themselves from that failed relationship without endangering themselves from lack of needed care.

(no subject)

Date: 2014-03-10 06:50 pm (UTC)
wild_irises: (koala)
From: [personal profile] wild_irises
*waves at [personal profile] azurelunatic who was also at FOGcon this weekend*

This is close to what I wanted to say, which is that all serious relationships between adults, or adults and children old enough to negotiate with, "have a care component," and in all serious relationships, it runs in both directions.

When [personal profile] stonebender, who probably doesn't read this journal, and I are together, even though we are not lovers, I am "responsible" for his physical needs, because he cannot meet most of them himself. And he can't do much to meet my physical needs either. However, he can care for my emotional needs (and I for his), and that is also a care component.

(no subject)

Date: 2014-03-10 11:14 pm (UTC)
azurelunatic: A glittery black pin badge with a blue holographic star in the middle. (Default)
From: [personal profile] azurelunatic
*pokes the internet* We may have chatted in the consuite! I had a rainbow scarf on my cane and that green & purple crocheting project.

(no subject)

Date: 2014-03-10 07:17 am (UTC)
highlyeccentric: Sign on Little Queen St - One Way both directions (Default)
From: [personal profile] highlyeccentric
This was really interesting, thank you.

I've seen a lot of those articles lately, too, but few of the conversations about self-care. In fact an ongoing frustration for me is that I almost *never* see decent internet people who aren't dickheads acknowledge that mentally ill people (and presumably other ill people, but I've only caught this first-hand with mentally ill friends/partners) can be abusive too. Nor the fact that many carers, friends, partners etc are also mentally ill or disadvantaged on some other axis.

Which is not to say that your points here aren't strong ones, for they are. The only way I can concieve of balancing those two sets of variables is via everyone being extremely up-front, blunt, and honest about what they need and what they can or can't do. Which sounds lovely... but requires all parties being practiced at this. Sigh.

(no subject)

Date: 2014-03-10 10:18 am (UTC)
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
From: [personal profile] rmc28
So my instant-response to this is: I have two major relationships in my life which have a necessary care component and will do for years. I do not consider parenting an inevitably toxic relationship!

The analogy is far from perfect, because children grow up, and the last thing I want to imply is that only caring that gets easier isn't toxic ... but even so a relationship that lasts years could be considered successful, and I have spent years caring intimately for other people's physical needs and hell yes it is far better when they can communicate their needs clearly, and I respond to that communication.

Also the power-imbalance between parent and child makes this a problematic analogy, and I do not want to imply adults with care needs are not-of-adult-status. So maybe it's not that helpful, argh, but my response to the "toxic" idea was so visceral I think I will still post it.

(no subject)

Date: 2014-03-10 12:48 pm (UTC)
forests_of_fire: A woman with shoulder-length black hair. She has a friendly, but serious smile on her face. (Oleander: Default)
From: [personal profile] forests_of_fire
Thank you for sharing this. It's definitely something to think about.

(no subject)

Date: 2014-03-10 01:49 pm (UTC)
silveradept: A kodama with a trombone. The trombone is playing music, even though it is held in a rest position (Default)
From: [personal profile] silveradept
I have read and appreciate this post. I don't think I have anything of substance to contribute, because while I might have superficially similar elements, I have little experience with what I think are the subtleties of it.

(no subject)

Date: 2014-03-10 02:08 pm (UTC)
quirkytizzy: (Default)
From: [personal profile] quirkytizzy
As always, you write stuff that I sit and gape at, because SO MUCH YES. I really like the part about making someone believe they need MORE care than they actually do - I hadn't realized that's gaslighting, but it is, and that was a huge part of my previous relationship.

"I hate knowing that I am hard work." Me too. I come with a lot of qualifiers, a lot of warning signs, a lot of history that shows up today in ways that I can't turn down. But pretending that I'm NOT hard work only makes me crazier in the end - and everyone around me crazier, too.

(no subject)

Date: 2014-03-10 06:24 pm (UTC)
pretty_panther: (av: bound loki)
From: [personal profile] pretty_panther
I agree with everything that you've said here. We do need to do better.

(no subject)

Date: 2014-03-10 08:57 pm (UTC)
jesse_the_k: harbor seal's head with caption "seal of approval" (Approval)
From: [personal profile] jesse_the_k
Excellent essay, gripping analysis, will ponder again and again.

(no subject)

Date: 2014-03-11 11:05 pm (UTC)
marnanel: (Default)
From: [personal profile] marnanel
am thinking this over. thank you for posting it.

not least of the things I learnt was the word "allistic".

Thank you

Date: 2014-03-13 12:39 am (UTC)
From: [personal profile] squigglefish
As mentioned on facebook, I've found this discussion very useful and thought provoking. I'm not going to go into details, mostly because I don't know what to say other than this is meaningful and useful and matters to hear said.

Thank you

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kaberett

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