I Think I'm Care-anoid

In less than two weeks, a case worker will be visiting my house to decide how disabled I am. This is a source of great anxiety: for a long time, I avoided ying for In-Home Health Services (IHHS) or Supplemental Security Income (SSI) because I knew I would be evaluated. This home visit is for IHHS. It determines whether I am eligible for in-home care, and if so, how many hours of care work the government is willing to pay for.

Alameda County pays $18.55 an hour for IHHS labor. This is a 10.7% increase from 2022, when SEIU2015 (the long term care workers’ union here) won their contract. By 2025, Alameda County care workers will make $20/hr at minimum. Better wages than any other county in California, and it’s still shamefully low—you can’t afford to live in Oakland at that rate.

Unfortunately, I really fucking need in-home care. I’m skeptical about relying on anyone, and relying on a low-wage worker seems like the worst of vulnerability combined with my own worst fears of moral blameworthiness. Of course, nobody has ever told me that hiring in-home care workers would make me a bad person. The “disabled people vs. workers” discourse that’s plagued conversations about exploitative delivery apps (i.e. Doordash) has yet to cast its gaze upon home care. But the contradictions seem to map.

The Doordash conversation is structured by the fact that, as far as we know, most Doordash customers are not disabled. To the extent that it does offer a crucial disability service, it does so as a product of neoliberalism, filling in the gaps of our social safety net. IHHS, on the other hand, is one of the few remaining social safety net programs disabled people have. It's not a private corporation, though many for-profit agencies are involved in its implementation. So why are Doordash workers paid better than IHHS workers?

Care work is deeply intimate and requires a stable connection, and yet the jobs—as designed by the state—are incredibly precarious. In her article for LIES Journal, Jomo describes how nursing home workers find ways to genuinely care for elders with dementia while resisting speedups and overwork. She writes:

For CNAs, our alienation comes from the fact that we interact every second of our workday with the people who our labor affects directly, and we do see what happens to them when our human powers are degraded and destroyed by the discipline of capitalist profit motives, to the point where we can’t care for them the way we know we should.

To Jomo, residents and CNAs are both victims of the managerial disciplinary regime. But what happens when the care recipient is your boss? IHHS is implemented as a self-directed program, in keeping with the demands of disability rights activists. This primarily means that IHHS recipients can hire or fire carers at will. “Self-direction”, in this case, is limited by the Medi-Cal funding stream. You don’t decide the wage rate or how many total hours of care you receive: those are decided by your doctor and your case worker. But disability advocates have fought hard to have the power to fire caregivers that abuse us, pass judgment on our lives, or just don’t give us the help we’re looking for. Unfortunately, this has sometimes meant fighting against the unions, who are understandably fighting for more job security. I don’t quite know how to resolve this contradiction.

I struggle with the idea of hiring anyone, because I know I would struggle to fire someone. I don’t believe I should have that kind of control over someone else’s quality of life, even if they have direct control over mine. I also know that this whole essay so far has been structured by my own neurotic mental loops. Let me take a breath and come back down to earth a little.

If there’s one thing I’ve learned from five years of sex worker organizing, it’s to focus on the actual demands of actual workers, not abstract debates over the morality of consumption. Disability organizations and care worker unions don’t always see eye to eye: there are points of genuine contention. But none of this is about whether disabled people “should” need in-home care. We do, and we always will. So we need to make care work better, not just as good leftists, but as disabled people with a self-interest in our survival.

With all apologies to Diane Di Prima, I desperately support a federal jobs guarantee. A JG is a transitional demand that gives workers leverage in the workplace, offers customizable employment to disabled people and other people typically excluded from the formal labor market, and facilitates social provisioning of public goods and services. In the case of IHHS work, care would remain self-directed, with the caveat that “firing” a care worker would not result in their removal from the JG program.

Even if they did something that meant they should never work in a care position again, they would still be eligible for other work, and for re-training if their current skills don’t match any positions. Removing the threat of unemployment allows for better relations between carers and care recipients, and JG jobs would be structured to actually accommodate disabled workers. None of that fake HR shit.

I know I have some friends who would chafe at me putting forth schemes that just entail “here’s how the state should allocate care work”. I’m not going to do some convoluted exegesis about non-reformist reforms or anything, I’m just going to be real: I have lived as a broke disabled communist, among other broke mostly-disabled communists, for a long time now. There is not enough mutual aid in the world to meet that need, when we’re all drowning ourselves. We are letting each other fall through the cracks.

Obviously, yes, capitalism is at fault here. Hopefully, g-d willing, the transition from socialism to communism will get us to a place where we can care for one another on a free and voluntary basis. I think getting to socialism in the first place is more likely if we demand an end to unemployment, even if the capitalist state will never concede to that demand. But also, if I’m being frank, I’ve learned that I can’t live life waiting for the revolution to save me. I’m going to keep fighting, but I also need to imagine worlds in which I survive even if communism doesn’t come in my lifetime. There are policy changes, like a JG or a living IHHS wage or decriminalization of X and Y and Z, that make that survival seem a little more feasible. I’m learning to live for “better”.

I’m Reading

I And Thou by Martin Buber (on audiobook)

I was getting myself worked up about “How do I know if I’m relating to the divine correctly? What does prayer even mean? How do I understand a g-d that is neither actively answering prayers nor ignoring them?” and my Rabbi told me to read this. So far I don’t feel any less confused.

On My Mind

Grief, and terror, and a lack of control over the world show up in funny ways for me. A few weeks ago, I was unfortunately hospitalized due to what I’ll call a “nervous breakdown”: the conditions were terrible and inhumane, and I hope to never go back. I was released within 24 hours due to overcrowding, for which I was grateful. I've been hospitalized six times in my life: this was by far the worst one.

I know a lot of prison abolitionists also believe in abolishing psychiatric hospitals. It’s a reasonable proposal: psych wards are by and large inextricable from the carceral state. I absolutely oppose involuntary commitment. But fuck, I went to the doctor just wanting, more than anything, to go to a good hospital. I didn't want to have to ask for community care or for my friends to have to be on suicide watch. I wanted a medication adjustment, three mediocre meals a day, and some group therapy with people with very different lives and problems.

Unfortunately, there weren't beds in the better Medicaid hospital. There were barely beds in the terrible one, where they didn't feed me or give me my meds and yelled at me to calm down. I don't think "defund" alone is the answer here: they're low on funding as-is. I want to trust that we can build the infrastructure where even voluntary psych hospitalizations aren't necessary, but I'm just not sure. It often feels like I'm living in a different world when I try to talk about this. My standards for what is traumatic vs. what's just a normal psych stay are admittedly really, really high. 

But like, they took my laptop and just never gave it back. That's fucked up.

Piero’s Haircut

On a brighter note, Piero got a haircut.