Negotiating care needs
Mar. 10th, 2014 12:06 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
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.
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: 2014-03-12 09:11 pm (UTC)