An Open Letter to our Anarchist, Socialist and Radical Leftist Comrades

We think you may have forgotten about us. Or at the very least you are trying to. The new normal in society at large excludes a number of people, among them some of your comrades: us. Need we remind you, that disabled and chronically ill people can be radical leftists. The entire range of self-proclaimed radical leftist politics should include anti-ableism by default. Without anti-ableism as a founding principle, all that remains of the radical left project is hypocrisy.

Inclusion and solidarity are not empty words. They call for practice. Without practical implications, they are buzz words made up of hot air.

Together, we can create a world that includes everyone. If you still want to, that is. And you should want to, because being abled-bodied and healthy is a temporary state – it might quite possibly not last forever. Most people experience disability or illness at some point in their lives. Or at the very least, they will have loved ones with this experience.

COVID-19 can disable anybody. The risk of getting long COVID is estimated at over 10%, and with every new infection this remains the case. In the so-called “new normal”, a world with such high rates of re-infection, we can expect the number of people who become disabled through long COVID to keep rising consistently. It is for that very reason, that many call this a mass disabling event. It is why some of us who have long COVID keep shouting about it on social media, in a desperate attempt to warn people and remind them to be cautious.

At what point is there going to be enough of us for you to start to notice?

In our circles, at our events, and gatherings, we can stop – or at least decrease – the damage. And by doing so we make society better for everyone. More inclusive. Safer.

Here, we attempt to outline some of the tools we already have, alongside all the protective measures that could or should be used in order to achieve a safer and more inclusive setting during our events, gatherings, parties, and circles. These guidelines are meant to inspire better accessibility and inclusion at events planned in the coming months and possibly years.

As you may have guessed, this text was written by people who were pushed into self-isolation because of the lack of solidarity we have experienced in society at large, but – and this was much more shocking – even among radical leftists. Please do let that sink in. Some disabled anarchists are in a state of shock because of the abandonment we experienced from our (former) comrades, who we had always assumed would have our backs in a crisis, maybe one just like the ongoing pandemic. We obviously expected nothing else from the state, the capitalist system including the health care system, and maybe even from our families. But from our comrades, who love to use words like “inclusion” and “solidarity”? It came as a huge shock to get abandoned by them, as well.

How could this happen?

This cannot stand.

To be clear: the following checklist/guide is not optional. It is not a menu to pick certain items from. Most protective measures listed here are needed at all times. But at the same time, every little thing can help. The most important part is an open and honest communication. What will get done. What won't. Crucial.

Feel free to contact us with further suggestions.

Digital and hybrid events

We are aware that some people do not enjoy the digital format for their gatherings and meetings. At the moment. But the full potential of digital-only events may well not have been exhausted. We believe many more possibilities do exist to make our online events more fun, entertaining, varied, and beautiful. Let us use our imagination.

So yes, during an ongoing pandemic, digital events are still the best option to keep everyone safe, to not risk any infections or the possibilty of developing long COVID.

If you do choose to plan in-person events in the so-called meat space (go vegan lol), it is of absolute importance to organize them as hybrid events. Which means offering parallel remote access with a possibility for interactions for all attendees, to ensure those who need to or choose to avoid indoor gatherings are not excluded.

And let us tell you, it is excruciating how lonely it feels out here, when your friends, or maybe former friends, gather at an event that you wanted to attend, but now you can't because you are socially isolated at home, chroncially ill, or disabled. And then there's not even a bloody video stream for it? Wow.

However, hybrid events should not be thrown around as an afterthought or an “add-on” to events planned in the classic in-person format. Simply having a camera pointing at the speaker during a conference, and allowing people to tune in, does not make it a hybrid event: that's a live broadcast and/or a webinar (which can at times be the appropriate format!). But in a hybrid event, we are looking at actual participation for all the attendees, in different ways, aiming for the same level of engagement, involved in the same flow of communication, for all those involved whether via remote access or in the room.

Upstream and downstream participation are not only technologically possible, they can be organized in a secure way, even encrypted, to protect all participants' privacy (if that is preferred) and they can enrich an event in amazing ways – as the Chaos Computer Congress has proven in practice for many years already. The know-how is out there. Ask for help.

Believe it or not, there are also certain speakers or panelists who would actually prefer to participate remotely, if given the choice to do so. This needs to be offered as an option.

Asynchronous options offer further possibilities to enrich the experience before and after the actual event, be they recordings, texts, slide sharing, data sets, or other files sent out beforehand, or transcripts, feedback sessions etc. afterwards.

But it starts even earlier. Already in the choice of the location for your event, crucial questions for accessibility are raised. How easy is the location to reach? How easy is it to find? Is there a need to put up street signs pointing out the directions? Does transportation need to be organized? Weather and time of the year permitting, does the location offer open air options (especially for sustenance in drinks, food and smokes)? Are all rooms, bathrooms, outdoor spaces wheelchair accessible?

The building needs to be thoroughly scrutinised with all the questions of accessibility in mind. And – during an ongoing pandemic – air quality, ventilation, air filtration can determine how suitable a certain location is; more on that further down.

Disease control

Masks

One of the most important factors in preventing airborne diseases from spreading (one of them being COVID), is the implementation of masks. Although masks can be worn to somewhat protect people against the intake of contaminated air, unfortunately one-way masking is not a guarantee for staying safe. The most effective way to prevent the spread of viruses is to not contaminate the air in the fist place. With two-way masking we can prevent both inhaling and exhaling virus particles in shared air.

Masks work best to protect others. Even if a person is sick, if they wear a mask this keeps others around them fairly safe. As such, masks are a fantastic expression of communal care, as they protect other people's health in the most practical manner. I protect you, you protect me, we protect each other. The more people willing to protect those around them, the less virus gets into the air. It really is that simple.

It is important to strongly emphasise the need for masking at any event. A simple recommendation is not enough, as this will result in inconsistent masking. Masks should be required, be it by a consensus or by committee decision. Only when everyone is wearing masks, do we truly protect each other from viruses such as COVID.

Another critical point to stress is the type of masks that should be worn. Scarves, fabric masks and surgical masks aren't as effective as we need them to be. Even though they are an improvement to wearing no masks, the quality is still not good enough. Events should require masks of KN95, N95, FFP2, FFP3, KF94 quality or better. Elastomeric respirators and PAPR systems do the trick as well.

To ensure all-round good quality masking, events can provide masks for free at several locations all throughout the venue, not just at the entrance. Informational posters on how to wear them properly (over mouth AND nose, ensuring a good seal) are also a good idea. Event organisers can set an example by wearing their masks at all times.

How to deal with people who refuse to cooperate? This depends very much on the philosophy of the organisers. To communicate clearly about the mask requirements ahead of time, and also to provide free masks might well foster a social dynamic encouraging people to adhere to the consensus.

Clean air

All of the rooms need clean air, that is crucial in a layered approach of protection against infections (see: swiss cheese model). This can be achieved by going outside or opening some windows (during the summer), by filtering (i.e. air purification systems using HEPA filters) and/or by ventilating the rooms. CO2 monitors can be helpful to monitor the air quality as well. A detector that detects COVID in the air is in the works, and as soon as these are available they could be quite helpful as well. (For more info, see the links section)

But it is just as important to not overcrowd rooms. As a rule of thumb it's better to have rooms that are too large, just in case, should more people than expected show up. And even if they don't fill up, this allows people to sit apart, to socially distance, if they don't like crowded settings.

A DIY Corsi-Rosenthal box can be a good, cheap solution for air filtering, especially for organisations and groups with a limited budget – that is, if the necessary parts (like the filters) are even available where you live.[1]

Personal hygiene

Make sure to provide soap and hand disinfectant, but also to frequently disinfect items that are collectively used like elevator buttons, railings, door handles etc. These are good ways to fight fomites. However, it must be understood that this does almost nothing to prevent the spread of airborne diseases, like COVID-19 and others. These spread through aerosols. Counting on disinfectant and personal hygiene alone is insufficient in keeping attendees and organisers safe during an ongoing SARS-CoV-2 pandemic.

Sanctuaries of silence

For neurodivergent people (and others), crowded settings can be overwhelming. It is crucial to consider scenarios for attendees who may experience stress in crowds. Sometimes a small (or large) side room can be set up as a sanctuary of silence, maybe even with a care person on standby, to be available if someone is in a crisis and chooses to ask for such help. This would be the ideal setting: a dedicated room in the care of the awareness or accessibility team, but the issue can also be solved in other ways. For instance in summer, when the weather permits it, such a sanctuary can be located somewhere outside. If the event is planned as a hybrid event, such measures turn into nice-to-haves instead of must-haves.

Sign language interpreters/accommodations for people with hearing disabilities

Captioning and transcripts are helpful to many, not just HOH/Deaf people, but also to neurodivergent people. Sign interpreters should be standard for accessibility at our events.

Accessibility for people with various mobility needs or chronic illnesses

It should be clearly stated in all descriptions of the event whether the venue will be wheelchair accessible, and if it is possible for wheelchair users to enter all or only some of the rooms, including the bathrooms. Disabled people should not have to ask for this information.

If there are stairs, it should be stated if they are accessible for people with canes or pain in the legs or similar conditions. Are the stairs steep, are the steps very high? Are there railings?

If there are heavy doors that people need to open, this needs to be stated as well. They might be a difficult barrier to cross for people with, for example, pain in the hands, arms, shoulders.

If needed, help should be offered to make it possible for people to enter and navigate the venue.

Are there toilets? Are they accessible to the public? Are they accessible to wheelchair users? Is there a toilet designated for disabled people? This information is crucial for people with bowel and bladder issues (which are common in long COVID).

Are there places to sit comfortably? And the floor does NOT count, you fucking hippies.

Are pacing or bathroom breaks planned during the event? If and how many are needed depends on the type of event, the duration, the general context. If the event is pretty informal, has more of a loose structure, and no one will miss out if they take a break whenever they need to, then there might not be a need to schedule pacing breaks. Otherwise, it would be good for people with various health issues to have regular breaks in short intervals.

Vaccination/tests requirements

Vaccination requirements are a controversial issue, especially in the case of COVID-19, where the vaccine offers only limited protection from infections. Vaccine requirements can exclude people from participation in various devious ways. For instance, there are people, who cannot get vaccinated for health reasons. Some countries do not or cannot offer the boosters on a regular basis.

A recommendation seems like the better solution here.

Tests should be freely available for all people who attend (just like quality masks), and in case of a camp this can be discussed as a requirement. But this is also a controversial issue, that raises the question of policing, and power differentials, as in who controls these things and in what way. Since in the layered approach to protection from infections – the famous swiss cheese model – vaccines and tests represent one single layer among many, it is better to focus strongly on the mask consensus and on air quality and to maybe add/promote tests/vaccine recommendations as optional additional layers.

Another issue here is the sensitivity and accuracy of the easy to use antigen tests (so called “rapid tests”). While false positives are very, very rare, false negatives are very common in asymptomatic infections. This means a positive test result means you can be sure you have COVID, while a negative result's meaning is more ambigous. Newer variants might well increase the problem even in symptomatic cases, who knows? For now the prediction remains that the tests will continue to work well. Still, a negative rapid test result might bring a false sense of comfort. This is why researchers state that the best, most reliable way to test for asymptomatic infections is by 3 consecutive tests at 48 hour intervals[2] (for more info on COVID testing, see the link section). For events, this sounds like a very complicated process.

PCR tests are considered to be reliable, but in many places around the world it is almost impossible to get tested that way, unless you are perhaps in a DIY biohacker/biotech collective.

COVID is also not the only respiratory disease that we do not want to spread. If we want events to be truly accessible for all chronically ill or immuno-compromised people (and again, long COVID is creating large numbers of them), we should try to avoid spreading other harmful airborne viruses and bacteria as well.

Policy for people with symptoms

This should be a no brainer. No, really. If a person has symptoms of an airborne disease, they should not spread it by attending in-person events. At the same time, many governments around the world have started to relax quarantine policies. All the more reason for us to remember the simple and logical things at our events. If a person has COVID-19, they must stay away. Given the general situation, this needs to be stated in the communication for the event. But the anguish of having to miss out on an event or gathering, because you have gotten ill, can be eased somewhat if there is streaming that allows remote access and various ways to participate.

At the same time, it is important to trust people. Not every person who coughs or sneezes has an infection; allergies can be the cause for that as well.

Open communication

tl;dr: Every event should offer clear information that is easy to find about all these various factors that concern accessibility. Obviously all the communication needs to be barrier free, that means online there are alt-tags on images, all the textual content is screen-reader tested etc. Communicate with extreme honesty about what is and what is not done to protect people, which helps people to make their decision if they can attend the event or not. It also helps if there is a process in place to receive constructive tips, information, but also feedback and complaints before, during and after the event. Some improvements may still be possible for implementation even during an ongoing event, and if not, the feedback can be collected for future improvements. Many events already have care teams, but an accessibility team can focus specifically on these aspects while also accommodating people's needs on the ground.

Please consider the following: Many disabled, chronically ill people are tired of always having to ask for inclusion or even for information about accessibility. Many of the things discussed above should be a given, but sadly, even in radical left spaces, they are not. Somehow it seems to be our job to keep asking, begging, for these improvements. And many of us are tired of it. That is our reality. And it has been for some time already.

Accessibility all too often has only been an afterthought. Proactive measures would be much appreciated, as they signal an inclusive attitude in practice, not just in theory.

Information about accessibility (including the COVID safety consensus) for your event or gathering space should be easy to find and easy to read for everyone (including screen reader users or people with vision impairment). This information, or at the very least a link to it, should be attached to all information channels you are using to promote your event (for example – social media, invitations, leaflets), and of course on your website, if you have one.

If, for reasons that you may or may not have any control over, your event will not be fully accessible to everyone, you should clearly state this. Do not ever promise accessibility that you then cannot offer. By being radically honest about what you can and cannot do, you are offering accountability and showing to others what can and should get improved in the near future. You are also saving disabled people the trouble of having to ask for this info and making the decision about participation easier for us.

Make sure to have an easy way for people to give you feedback about accessibility concerns regarding the event, such as an email, or an online form. This will allow organisers to evaluate which tools and solutions worked well in the context of the space/event, and which ones need improvement.

If possible, have a person or a team dedicated to handle all things accessibility, and involve them in the design and planning of the event. During the event, this team, maybe helped with volunteers, can be tasked to help people with any issues related to access, and even to make sure that attendants are respecting preventive and protective measures. It is a great idea to involve a range of people, from accessibility experts to volunteers, to help in the preparation of your meeting space, such as a squat, or your new NGOs office or your mutual aid project's base of operations. It is important to not forget about accessibility from the onset of your projects, and to think of it as an integral part of your activism.

Because ... who else is going to do it?

We know that it sometimes is complicated, costly, difficult, hard to step up to do the right thing for more accessibility. We also know that leftist organisations are often underfunded, sometimes troubled by conflicts with the law, or the targets of fascist attacks. We are aware of the all encompassing propaganda by the state to keep dissenting voices a minority.

But just because something might be hard, it does not change what is the right thing to do.

We need to try and create the kind of events, spaces and groups that can serve as models for a future, better, world. This is what prefigurative praxis looks like. It is the work we need to do.

We should collectively reject the eugenics, the fascism, and ableism of all state institutions.

We should publicly grieve everything that we lost because of the ongoing COVID pandemic. And here we mean not only all the unnecessary losses of life and the increased rates of disability (because of an insidious virus, because perpetual growth imperative under capitalism, because nation states, because misinformation), but also the loss in solidarity and inclusivity, that have resulted. We should face these truths about the pandemic together, and process them together.

Practice grieving as a revolutionary praxis.

Together, we should fight the forces that want some of us dead, and the rest of us meekly agreeing to their tyranny. The disabled or the chronically ill are considered as surplus under the neoliberal capitalist system – we are no longer of economic value, and thus worthless. Refusing to fight this notion means being subservient and compliant to the interests and wishes of the rich and powerful – the exact same people responsible for continued oppression and genocide of many groups of both humans and animals, for inaction against climate change, and for normalising inaction against COVID.

That is why an anti-ableist stance and a clear position against eugenics, is so essential to our shared struggle. Since more and more of us under the current system will end up disabled, chronically ill, and turn into surplus, this is bound to become an even more important battlefield for both our mobilisation and our resistance in the coming years.

There will be no anti-capitalist revolution (whatever form it might take) without anti-ableism and anti-eugenics.

We need to fight the virus together: both the respiratory virus (like COVID) and the virus of capitalism.

And who else is going to do it, if not the radicals, the socialists, and the anarchists?

With solidarity and love,

some comrades

(We are a radical communal care group for chronically ill and disabled comrades and their carers, please feel free to contact us if this interests you.)