Caregiving under dictatorship

Looking to the past to make sense of the present

My American corner of the internet is convinced that the US is now a fascist dictatorship. Given the way fascism is associated with eugenics, this has unleashed panic.

Being someone who intellectualizes situations, I’m having a hard time wrapping my head around what’s changed. What’s happening, what are the relevant legal mechanisms, and what’s changed? Looking into this quickly exhausted my legal knowledge and it was difficult to see how things in the news connected to caregiving.

Even trying to understand what fascism is, precisely, quickly reminded me that the US isn’t technically a democracy and that all of these terms have academic meanings different from how they’re used in conversation — a much simpler ‘bad’ and ‘good.’ I’ll accept the premise that the US is a fascist dictatorship for the sake of getting to the real questions.

The biggest question is: do all fascist dictatorships engage in eugenics? This is hard to answer, since the question needs to be narrowed down to do they engage in eugenics more than other countries?

During the era of most of most fascist dictatorships (the 1930s, 40s, and 50s) there was virtually no support for families who chose to keep a disabled person at home, so the choice was between state-funded institutionalization, privately funded institutions, and home care without any support. As far as I know, this was the case throughout Europe and North America. I’m overlooking sterilization campaigns and criminal neglect of the institutionalized, since those policies were carried out in the (anti fascist) US during the same era. In order to be distinct from policies carried out in the US, there needs to be extreme neglect (ie. cutting off all food supplies) or active mass murder.

I put together a quick chart:

Mass murder of the disabled seems to have only been carried out in Germany.¹

A major protective factor against active murder of the disabled under eugenicist regimes was Catholicism, something that’s less relevant in the US today than facist Italy, Portugal, Spain, and Chile.

The main motivation for mass murder through neglect, even in Germany, seems to be the fact that institutions for the disabled were appealing compounds to put to military use. They already contained medical equipment, dormitories, sanitary facilities, and large quantities of food. When resources became scarce, countries redirected resources away from institutions for the disabled towards soldiers, leading to a horrific loss of life.

So, while it’s entirely possible that a fascist dictatorship would engage in mass murder of the disabled through extreme neglect or active slaughter, it’s certainly not a core part of the ideology.

Talking to people about living under dictatorships in Portugal, Chile, and Spain² gave me a lot to think about, without offering up any easy answers. They neither left me feeling like the disabled were in grave danger nor reassured me that things would remain more or less the same. This makes sense, given that caregiving is such a huge topic.

I know that whenever I look at historic health data, it was typically gathered for military goals. It’s the need for a military that motivates nations to measure the physical abilities of its people and set about to improve them on a large scale. Nations that prioritize the military tend to provide for public health, social services, care for disabled veterans, and pensions. Fascist states are very concerned with fostering good health, traditional families, and stability. Caregiving is generally part of a traditional family role.

Mussolini likened his social welfare programs to an Italian version of the New Deal. He organized existing programs for accident, unemployment, old-age, and disability into an expanded national system.

Franco’s Spain expected everyone to work and didn’t tolerate shirkers, while noting that the disabled were excused from these social duties.³ Much like in the US, there were systems put in place to determine who was legitimately unable to work.

Early in the regime, the focus was on recovering from the war, including addressing a huge number of orphans, disabled veterans, ongoing epidemics, unsafe work conditions, and widespread malnutrition.⁴

Medical care was delivered with the goal of returning people to the workforce. Laws were passed to reduce the likelihood of workplace injuries. Franco instituted a program of employer sponsored insurance and old age pensions, with earlier enrollment for the disabled.⁵ Disabled people were provided with vocational training, to retrain them based on their current abilities.⁶

While existing care institutions continued operation and legislation was created to expand care for the disabled, the expansion of services didn’t materialize under Franco. In the face of insufficient government services, groups of family caregivers sprang up to fill the gaps.⁷ At the overview level, I can’t discern meaningful differences between this and what was happening in the US during this era.

Salazar established a system of medical care, education, and social services throughout Portugal. He also established the minimum wage and social security. Under the dictatorship, life expectancy rose from 45 to 65.⁸ This was, of course, when these systems were being established in most western countries. Prior to the dictatorship, Portugal had the will to create a national healthcare system but had been unable to because of political instability and lack of funding. Healthcare became a constitutional right after the revolution, but Salazar had already expanded and organized existing patchwork care networks and then established it as a universal right.⁹

Criticism of the Portuguese system at the end of the dictatorship doesn’t suggest a hellscape of neglect and eugenics:

“One of the remaining major problems was the still modest role of the State, and the fact that private health institutions were much more abundant than State-owned ones. Another problem was related to the various health subsystems, and the inefficient management of the existing resources, which maintained social inequalities.”¹⁰

Unlike Italy, Spain, and Portugal, Chile had comprehensive welfare state programs before it became a dictatorship.¹¹ When Pinochet first took power, social services were cut in order to expand military spending. Eventually, improvements were made. There was a massive public health effort to provide clean drinking water, indoor plumbing, and immunizations. Then the public health systems were unified, private care was introduced, and access to care was made universal. The health care system under the dictatorship in Chile is criticized for the inequalities created by a hybrid public/private system, particularly when accompanied by underfunding of the public system.¹² ¹³

Once again, there doesn’t seem to be a distinct fascist ideology of health care:

“After addressing the concerns of neoclassical government economists, military authorities, and the somewhat marginalized, yet still powerful, Chilean Medical Association, the final legislation enacted a mixed system of health financing which is still largely intact today.”¹⁴

Chile’s dictatorship only ended in 1990, but that’s still a good amount of time to change their healthcare system. It’s considered a neoliberal system, not a fascist one. The private insurance introduced by Pinochet is likened to American style HMOs. It seems that the disabled continue to struggle after the end of the dictatorship, as a 2018 paper reports:

“A quick walk through the malls of the two main cities, Antofagasta (384,9 thousand inhabitants) and Calama (149,2 thousand inhabitants), shows a noticeable amount of physically disabled people who have turned to mendicity as a survival strategy. In this sense, during the 21st century, some scenes that root from medieval times are recreated.”¹⁵

It’s difficult to assess healthcare systems, because there is often a significant discrepancy between how they work in theory and the experience of patients and their families. When I read about the Portuguese and Italian healthcare systems, they seem more or less the same, both in terms of how they work and their shortcomings. My Italian friends living in Portugal vehemently disagree with this assessment.

I’ve heard many complaints about care under the dictatorships being inadequate and it’s difficult to figure out if it was because care for the disabled was not a priority and the countries were far less prosperous than they are today, or if it was because healthcare in the past simply was less advanced. Care for the disabled continues to be inadequately funded and difficult for families to access after the dictatorships have fallen. In fact, family caregivers in the US, Canada, and Portugal express very similar complaints to me, despite having radically different systems.

While I was researching support in the US and Canada, I was cynically amused to see how some programs spoke of human flourishing for all and some chided that it was the family’s responsibility to provide care, yet these programs barely differed beyond their branding. None of the programs were sufficient to allow a disabled person to rise to the poverty line, nevermind with a full-time caregiver also relying on the same meager social support. It’s like when the same cookies are sold in different packaging under different names and brands.

I can’t see what happened to educational and workplace accommodations when various fascist governments came into power because there doesn’t appear to have been any under previous regimes. The 1970s wasn’t a great time for accessibility anywhere.

It’s easy to find reports criticizing care for the disabled in Bangladesh. It’s also easy to find reports on government programs, NGOs, and community initiatives, along with legislation supporting the rights of the disabled. Healthcare is a constitutional right for all citizens. Despite this, access to care remains inadequate. There are major issues when it comes to accessing education for children with disabilities. The disability allowance is woefully inadequate. These issues appear to predate the dictatorship.

While I read about healthcare under fascist dictators, I kept thinking of the naive idealism I had when I joined Adrienne at The Caregiver Space. Obama was president and I came from a project advocating for universal healthcare. I had so much enthusiasm and hope. Now I realize the right to healthcare is not at all the finish line I imagined it to be. Just like with the Americans with Disabilities Act, theoretical rights are not the same as access.

I should have made a column to note which dictators enacted universal healthcare systems. It seems like a fascist dictatorship would be more likely to finally bring the right to universal healthcare to the US than to bring about any of the outcomes people in my internet bubble fear. Only time will tell.

The 25 April march marking Liberation Day in Portugal

1. It seems that under fascist dictatorships during WW2, the disabled were targeted because of other aspects of their identity, not their disability specifically. Axis powers and occupied territories identified disabled members of targeted groups and treated them like non-disabled members of those groups, which often meant torture and/or death. Chile also had disabled people targeted by the dictatorship, although again it appears that they were targeted for other aspects of their identity (such as their political actions, or those of their associates).

2. There are plenty of other dictatorships, recent and ongoing.

3. https://dsq-sds.org/index.php/dsq/article/view/6098/4817

4. https://www.scielo.br/j/hcsm/a/59C3nxFgrzFWdFJdsyQkJqG/?format=pdf&lang=en

5. https://dsq-sds.org/index.php/dsq/article/view/6098/4817

6. https://www.emerald.com/insight/content/doi/10.1108/her-07-2020-0041/full/html

7. https://www.scielo.br/j/hcsm/a/59C3nxFgrzFWdFJdsyQkJqG/?format=pdf&lang=en

8. https://run.unl.pt/bitstream/10362/21042/1/State_and_Health_1900_2013_.pdf

9. Lisbon’s Museu da Saúde, at the Hospital de Santo António dos Capuchos, makes no mention of the dictatorship. It presents 300 years of healthcare in Portugal as a gradual transition from religious charity to secular scientific medicine.

10. https://run.unl.pt/bitstream/10362/21042/1/State_and_Health_1900_2013_.pdf

11. The same can be said of Germany, which was the model for health insurance programs in Chile and many other countries.

12. https://www.humanium.org/en/chile/

13. https://jpia.princeton.edu/sites/g/files/toruqf1661/files/2000-5.pdf

14. https://jpia.princeton.edu/sites/g/files/toruqf1661/files/2000-5.pdf

15. https://www.sciencedirect.com/science/article/pii/S1875067217301499