Labor and money are both forms of capital and we’re short on both
I can’t ask people to help, especially not the people I need the help from. Marginalized people need to be paid for their labor, full stop. Multiply-marginalized people most especially need to be paid. And we, DASAN, have no money to pay them, none at all.
As of right now, 2020’s bare minimum expenses will be paid for out of the pockets of the three of us trying to do the work — and that’s complicated because we’re all disabled! One of us earns barely enough to get by; one of us is on a fixed and limited income; and one of us has essentially no income. I don’t know how we’re going to do this. I don’t know how DASAN is going to survive. I don’t know if I’m capable of doing this with our current resources.
Disposability politics
Today, I came across a post on Instagram by @accesscenteredmovement that says:
“If we are only allowing the most “capable” people with disabilities to lead our movements, we are using the an [sic] ableist paradigm to dismantle ableism. Instead, can we prioritize leadership of the most impacted? Are we including people with developmental disabilities, neurodivergence, chronic illness, and mental illnesses in our movements? People without resources and access to capital, work, and education? We cannot leave anyone behind.”
Oppression olympics and privilege
Let me just say that I recognize that I have privilege — a hell of a lot of it — by being a white and white-passing person. I am not the most multiply-marginalized person out there, by far. I can also pass as heterosexual and cis-gender (I am neither), my disabilities are usually invisible, and while I am fat, I benefit both from facial features that are mostly evenly proportioned and my ability to use makeup to accentuate certain aspects of my face — in other words, I don’t suffer from lookism. That means that visually, I can mostly “pass” as being a member of one of society’s most privileged groups: white, cis-gender, heterosexual, non-disabled, non-disfigured, and attractive. (I definitely don’t visually pass as having money — crooked teeth and very worn, ill-fitting clothing are visual cues for poverty. And while not a cis-man, these days I make an effort to appear to be a cis-woman because then I am taken seriously by the medical industrial complex; when I looked the way I actually am… well, read above about how it took me 9 years to get a crucial diagnosis. Those years were when my outside matched my inside.)
All of that privilege is getting me nowhere right now, though. And it’s not helping DASAN. Which brings me back to the quote I saw on Instagram.
I have a genetic disorder (some consider this developmental and some do not) and several learning disabilities. I have not been “officially” diagnosed with autism; I have been told by psychological providers that I have the traits but that after more than 20 years in therapy, I have learned to mask so well that by now,for example, holding eye contact only makes me uneasy, versus causing the meltdowns I used to have when people would attempt to hold eye contact with me. I have neuro-cognitive impairment, specifically mild cognitive impairment and disordered memory. Chronic illness I have in abundance and I have multiple mental illnesses.
Resources, well, I’m highly resourceful in that I know how to find things, but that doesn’t mean I can access them. I have no access to capital, work, or education. I’m 32 flavors of fucked.
“Capability”
I don’t know if I’m “capable” to lead anything, but I’m certainly trying to run something. I think I’m failing, though. “We cannot leave anyone behind?” Well, I’m trying to drag myself up from behind, but that’s about all I’ve got. Calling out people / the movement / the system for leaving me behind is useless, so I’m not going to bother.
I’m behind. Far, far behind. And no amount of dragging I do is going to get me, or DASAN, ahead.
If “we” were to “prioritize the leadership of the most impacted,” what would that yield? (And again, I am reiterating that I am not the most impacted, but I am more impacted than many.) Our society does not grant “access to capital” to those who cannot traditionally work and to those without formal education. Without those resources, how do we, no matter how “capable” we are, succeed? How can we support ourselves, let alone support a group — or for fuck’s sake, a movement?
Yes, there are those who have succeeded. People like to point to Sins Invalid as an example of this success. But many of the members of Sins Invalid have attended higher education, some have been able to work traditional jobs even if only for a while or part time, and they, as a whole, have something that most people discount: a huge amount of social capital. Social capital can be turned into financial capital when you’re savvy enough to do so. How do you become that savvy? Usually through having experience in family structures, formal education, or work environments that teach those skills. If you’ve had access to some, any, or all of these things, especially as a multiply-marginalized person, that puts you ahead of the rest. Access, in this manner, becomes a privilege, not a right.
Access as a privilege
When access is a privilege and access is only granted to those with privilege, others get left behind. This is true whether or not someone is disabled. When disability is added to the equation it becomes a societal judgement of who is considered worthy to be granted access. Enter the hierarchy of disability, internalized ableism by disabled people, and the unacknowledged competition among those of us who are disabled to gain access to the few resources available to us.
This year, I’ve found myself asking, “am I worthy?” of those available resources. I don’t have an answer. Ideas, plans, and moxie on their own don’t make someone capable of success. They don’t cancel out multiple disabilities, multiple marginalities, multiple disadvantages. I might have pluck and charm and tenacity, but do those things make me capable?
And what is “capable,” anyway?
Capability as ability and incapability as disability
When the word “capable” is used, I’m left with this thought:
“If I’m not capable, I’m unable. Because I’m unable due to the nature of my disabilities — due to my being disabled — does that mean that if I’m not capable, I’m disabled? And therefore, does that mean that those who are ‘capable,’ are they not, then, able? Which would mean they are not unable… which means they are, for the purposes of doing the thing(s) of which they are capable, not disabled? And by the very nature of this, are we then saying that only those who are able — those who can pass as non-disabled by having ‘the skill, means, or opportunity to do something’ — are capable?”
- (capable of doing something) Having the ability, fitness, or quality necessary to do or achieve a specified thing.
- Able to achieve efficiently whatever one has to do; competent.
Capable, apparently, means to be able. So what does “able” mean?
- Having the power, skill, means, or opportunity to do something.
- Having considerable skill, proficiency, or intelligence.
If to be capable means to be able, it follows that incapable means unable, right?
- (incapable of) Unable to do or achieve (something)
- 1.1 Not allowing the possibility of (a particular action)
- 1.2 (of a person) too caring or moral to do (something)
- Unable to behave rationally or manage one’s affairs.
And “unable?”
- Lacking the skill, means, or opportunity to do something.
This is starting to seem suspicious, because don’t these seem similar to another word?
- (of a disease, injury, or accident) limit (someone) in their movements, senses, or activities.
- 1.1 Put out of action.
- 1.2 (of an action or circumstance) prevent or discourage (someone) from doing something.
“Unable” and “disable” aren’t quite the same thing. “Incapable” and “disable” are closer. But what about…
- (of a person) having a physical or mental condition that limits their movements, senses, or activities.
- 1.1 Relating to or specifically designed for people with a physical or mental disability.
If “disabled” can mean “relating to or specifically designed for people with a physical or mental disability,” what does “disability” mean?
- A physical or mental condition that limits a person’s movements, senses, or activities.
- A disadvantage or handicap, especially one imposed or recognized by the law.
“A disadvantage?” You don’t say! Would that be similar to “lacking the skill, means, or opportunity to do something” — as in, “unable?”
The movement can make us capable; it can also render us incapable
If we center the leadership of the most impacted, who are those “without resources and access to capital, work, and education,” how can we expect those leaders to be capable of succeeding, especially if others in the movement(s) do not support the most impacted leaders by providing their own “resources and access to capital, work, and education?”
I get it — we’re all overstretched, overworked, over-committed. Asking to provide yet more of ourselves is a big ask; asking to provide more of ourselves to those who are at a greater risk of not succeeding due to being less “capable” is a huge gamble; and asking to provide more of ourselves for a huge gamble without providing appropriate financial compensation for our time, effort, and expertise is not only risky but also rude, unethical, inappropriate, and offensive.
So, where does that leave us, DASAN?
From The Personal to The Political: A Thought Process Regarding Worsening Disability And Activism
- A Medical Appointment (CN: Mentions of anatomy, medical conditions of sexual and pelvic organs, and medical procedures. No descriptions or details.)
- TMI: Sex (CN: Sex, anatomy, gender, psychology. Mentions of sexual trauma without descriptions or details.)
- Causation (CN: Mentions of anatomy, medical conditions of sexual organs, medical procedures, and medical trauma/neglect. No descriptions or details.)
- 2002: Pelvic pain origins
- 2011: Diagnosis and treatment of original injury
- 2013: Continued treatment
- 2018: Hysterectomy
- 2019: Diagnoses related to pelvic pain
- Feelings
- Developmental Years & Privilege
- Trying
- The Disability and Sexuality Access Network
- We Need Some Fucking Help, Desperately
- Asking for Help is Really Damn Complicated
- Labor and money are both forms of capital and we’re short on both
- Disposability politics
- Oppression olympics and privilege
- “Capability”
- Access as a privilege
- Capability as ability and incapability as disability
- The movement can make us capable; it can also render us incapable
- We Are Nowhere Without The Movement to Support Us
