This week in people of interest: Marta Russell
Marta Russell proposes a theory of disability that rejects arguments about culture and identity, instead charging that specific systems and values embedded within capitalism are the primary driver of (and justification for) legal frameworks sanctioning the institutionalization and economic exclusion of disabled people. A key question for Russell was: What do systems of production and wealth accumulation gain from the way in which disability certification frameworks are constructed and public benefits allocated? Centered in an analysis of means-testing, war spending, administrative burdens, and underfunded social safety net supports, Russell’s work showed how a society obsessed with optimization, efficiency, and cost-benefit analysis had created a vast network of laws and institutions that worked together to perpetuate what she called “the money model of disablement,” better known as “the money model.”
The money model, best articulated in Russell’s 1998 book, Beyond Ramps: Disability at the End of the Social Contract, posits that disabled people are not, as they are often framed in dominant culture, a “burden to society,” but are actually a valuable resource. As Russell explains: “…persons who do not offer a body which will enhance profitmaking as laborers are used to shore up US capitalism by other means.” Disabled people are a nexus around which the capacity for surplus labor power can be built (often financed in part by federal money)—whole sectors of our economy have sprung forth from the money model, which has normalized the commodification of things, systems, and places that maintain disabled bodies in pursuit of squeezing profit from the money which passes through disabled people towards their survival and care. For example, nursing homes, Russell argued, are not places of rest and comfort, but a strategy for commodifying the “least productive” so that they can both be “made of use to the economic order” and free up the labor supply of those who love and wish to care for them. This system benefits neither the workers nor disabled people, only what Russell called the “owning class.” US disability policy, instead of being oriented around supporting the needs of disabled people, sanctions and facilitates the capitalist capture of nearly all aspects of disablement, impairment, chronic illness, and disability, including the way that “reasonable accommodations” are commodified (as explored by Ruth Colker in her essay for this symposium).
Russell was not just a theorist but also was a long-time disability rights activist. Throughout the 1980s, 1990s, and 2000s she was involved in disability advocacy and organizing with ADAPT, Not Dead Yet, and the ACLU. Her efforts focused on policy interventions like assisted suicide laws and SSDI cuts, campaigns that challenged the many stigmatizing portrayals of disabled people sold to the public via the charity industrial complex, and more formal organizing and direct action with ADAPT agitating for home and community-based services as alternatives to nursing homes and other institutions of warehousing. As Nate Holdren argues in his piece for this symposium, Russell’s significant contributions to both disability theory and Marxism were crucially informed by her work in social movements. This connection between theory and praxis is reflected not just in the subject matter of her work, or in her citational practices, but also in the empathy, clarity, and rage with which she argues for the need for the left to begin to engage in a broad refusal of the economic valuation of life.
Russell’s political writing was extensive, covering the topics she organized around as well as more explicit political economic analysis of US policy and critique of the disabling effects of the then-expanding criminal justice system. Russell’s work was also highly critical of the liberal disability rights movement, arguing that disability rights discourse would benefit from embracing leftist thought and political economic analysis. Russell’s approach rejected the court-oriented civil rights strategy that was widely celebrated by liberal disability organizations and activists in the post-ADA era. This strategy, she argued, only sought to tamp down the violence caused by the ways that the state interacted with disabled people; instead, she focused on the political economic, not merely the “cultural” forces, driving systemic oppression of disabled people—an approach on which Jules Gill-Peterson expands in her essay for this symposium.
The lack of exposure that Russell’s small yet incredibly powerful body of work has had cannot be overstated. Her books are hard to find, there is one major printed collection of her essays, and one important book of essays about or incorporating her work. Until Capitalism and Disability: Selected Writings by Marta Russell was published by Haymarket Books in 2019, no comprehensive volume of her collected writings existed, nor was there broad citation of them within disability studies or law. Three years prior, when legal scholar and her former collaborator Ravi Malhotra edited Disability Politics in a Global Economy, an important anthology dedicated to Marta Russell’s memory, it was one of the first times Russell’s work was broadly celebrated within a purely academic context.
— from The Law and Political Economy Project.
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I can't believe the letter I've just had from my doctor's surgery, I am furious. I have suffered from severe migraines for years, and have had one stroke already. (people who get migraines are 3x more likely than the general population to have a stroke.) I'm at risk of another stroke. I've been prescribed a drug called topiramate for a while now, to reduce the frequency and severity of the migraines.
I've just received a letter from the doctor's surgery saying that, due to new guidance, as topiramate can cause birth defects, all women of childbearing age who take it MUST be put on birth control, regardless of whether they are sexually active. Which, as I'm sure you can tell from my username, I am not. I don't want to be pressured and bullied into taking contraceptives. Hormonal contraceptives have a lot of side effects, including increased risk of stroke. Apparently the wellbeing of a foetus who will never be conceived is more important than the wellbeing of a woman who actually exists! Even non-hormonal contraception is something I don't want, most of it involves embarrassing and painful procedures that I do not want to be subjected to. And quite frankly, it's the principle of the thing.
So I am going to have to stop taking this migraine med, which will be awful for me, because all the other migraine meds either don't work for me, or are unsuitable for stroke patients. I've even had nerve-blocking injections in my head from the neurologist which only worked for a couple of weeks, then my migraines came back with a vengeance. But no, a hypothetical foetus matters more. Is this not blatant sexual discrimination? I am so angry.
EDIT: You know what is extra infuriating? The letter didn't even offer the option to choose to come off the topiramate, or keep it and take the contraception. The letter just demanded that I go on contraception immediately. No "if you'd like to keep taking the topiramate please make an appointment to get contraception," just a very rude and authoritative demand that I make an appointment to be put on contraception immediately.
EDIT2: I've just read the letter more thoroughly. It says the problem with topiramate is that the babies of women who take it while pregnant are at a higher risk of ADHD and autism. Just think about what they're saying. They're saying ADHD and autistic people are so unwanted by society that it's better to force women to go without medication they need, or force them to take meds they don't want and that could have detrimental side effects for them, than let more autistic/ADHD people come into this world.
I know you're in a very tight spot financially so this advice might not be suitable but what if you get the prescription for whatever birth control and—oh no!—it turns out that the birth control prescribed has intolerable side effects. Wash/rinse/repeat until the bureaucracy is off your back and you are permitted to access the medication that you need.
You might even be able to get the written prescription and just sit on it, never filling it at the pharmacist, but idk to what degree they monitor medication compliance in your country so this might be a gamble.
The other thing would be to see if there's a provision for exemptions - generally speaking when it comes to medical policy there are provisions for this, and often a doctor's written directions on an official letterhead can be more powerful at bending a bureaucracy to your needs than the word of God. You might be able to come to an agreement with your doctor about this which would satisfy them so that they can advocate on your behalf. This is something that is wayyyy outside of my lane but a decent doctor will be able to advocate on the basis of the risks of polypharmacy and of interactions etc. to argue that, essentially, it would be medically negligent of them to prescribe you birth control. If a doctor did that, it's basically playing a trump card - a government department cannot override medical authority in this respect and they cannot force a doctor to violate the principles and code of ethics that they are professionally bound to, so if it escalates to that point then is very rare that a government department will do anything besides tucking their tail between their legs and backing down.
There's also the disability rights angle you could pursue. If you are in dire poverty and the government has now passed legislation that makes you accessing "reasonable and necessary" (ugh) treatment for your disability out of financial reach or if it puts an undue financial burden on you because you are effectively required to pay for an additional monthly prescription, then there's a human rights aspect to this and a disability rights org in your country or your local area, or even just a legal aid service, might be able to kick up a stink on your behalf such that the politicians will allow for exceptions due to financial hardship or they might even have to change it so that it becomes advisory rather than mandatory. There's likely medical associations in your country that are rankling at this government overreach into healthcare which would consider taking up your case so they can put the government back in its place.
Just spitballing some ideas for how to wrangle bureaucracy, from someone who has had to learn how to do it out of necessity.
That is awful. Apparently this is a newish guideline.
So if there's a way to still prescribe it when someone's pregnant, there must be a way to get around this if you're never going to become pregnant. Unfortunately it sounds like your doctors don't believe in listening to you.
And to add another insult Topamax actually makes birth control less effective.
It can take a long time to stop taking topiramate, too. I was lucky enough to have had no trouble quitting cold turkey, so it is possible, but I've heard stories where it's taken people months to taper without causing problems.
Do your migraines come with aura?
I've just read that link. Mothers who take topiramate may give birth to babies with a 2 or 3 times higher chance or ADHD or autism. Not only are they going to make my life a misery with this, it sounds like eugenics. Can't let anyone give birth to a baby that society doesn't consider perfect! This is some nazi shit.
Yes, they come with all sorts of visual disturbances, from geometric patterns, to looking like I'm looking through a broken mirror, to blind spots, to total blindness.
You said "people who get migraines are 3x more likely than the general population to have a stroke" - and if I remember correctly the likelihood is significantly higher for migraines with aura than those without. Goddamn.
Sexual activity is a migraine trigger for many people. If the doctors refuse to understand what asexuality is, maybe instead they'll believe you if you tell them that sex is a known migraine trigger and you already refrain from that so as not to have another stroke.
I'm sorry, I'm grasping at straws. I don't know how these people think, so I don't know how to persuade them ... I'm just trying to think of what I'd say to my doctor if they were attempting to force me into unwanted medication. I did have a somewhat similar (but not comparable, what you're going through is something else) experience with a neurologist a while back. They refused to refill my rescue medication (which helped) if I stopped taking their preferred preventative medication (which made things worse, and also made me want to die). I had to go without, and find a new doctor. I don't know what I would have done if I were in a more risky situation. It's horrible, when they start holding you hostage like this. I hope they let you appeal.
Thanks so much for the support. I think I need to try and write a letter explaining my position. Maybe someone here could give me some tips for writing it?
It's so infuriating as well because I haven't had sex since 2006. The only reason I even did it before that is because I had never heard of asexuality. I couldn't understand why all my friends were so sexually active but I had no interest. I thought there was something wrong with me, I only tried it to see if that would get me into it. It did not. Quite the opposite in fact. I haven't had any type of sexual contact in 18 years now, and never want to again. On top of this, I think I started going through the menopause this year. My previous regular, heavy painful periods have become light, painless and erratic. I don't even want to tell the doctor I think I'm going through the menopause in case they try to force me to have more medical tests, go on HRT or whatever. It's not bothering me and I'm happy to let nature take it's course. Basically there is no chance in hell of me getting pregnant unless god decides I'm to birth the next messiah, an immaculate conception happens, and if that happens, I'll have an abortion.
This fight against the doctor is just the last thing I need, I already have far more on than I can cope with.
this might be the key to make them not try to get you to take contraceptives – peri- and post-menopausal estrogen is dangerous for people who get migraines with aura, because it greatly increases the stroke risk.
I did a bunch of research on this a few months ago – if it would help you to have links to the studies I found, please let me know ❤️
yes, thank you.
Can you fight this? You def shouldn't be forced to take a med against your will.
If worse comes to worse, and you get BC pills, just don't take them maybe? My partner gets free BC and she ended up stockpiling them because she doesn't take them. Why she keeps going back and getting her next re-up after it's filled instead of cancelling, idk. But case in point, just toss them or flush them or maybe find someone that needs them.
As far as fighting it, no. I don't have the strength. I am already fighting a benefit appeal, struggling to get enough to eat while having cancer treatment and recovering from a stroke. I have reached my limit, I can't fight anything else.
The problem with pretending to take BC pills is that I'd probably have to have extra monitoring. Since I'm a stroke and cancer patient I already have to have a lot of regular health checks, if I was put on a med that increases stroke risk they'd probably barrage me with even more check ups and blood tests, maybe even see via blood tests that I'm not taking them, idk. But thanks for the suggestion, I will consider it maybe if there's no other way.
drugs
psilocybin can be used to make even cluster headaches manageable, i don't have any hard data on this at hand, but my ex suffered from it & apparently it's p common for folks to be recommending it in their intended social / support groups, so naturally she wanted me to hook her up. just a modest dose was enough to keep it at bay for a couple weeks, after which she'd microdose here & there. like it was literally the only thing that reliably helped. i wonder if it'd work in your case? ofc i understand this may not be something everyone is willing / able to try, just wanted to put it out there since your situation seems p nightmarish.
in any case, strength