I have been involved in activism for more than 20 years and am both a lawyer and former social worker. I mention this not to brag (though I am proud of what I know and what I have done), but to make it clear that I have skills, knowledge, and experience that could help me to not only participate in social and economic justice movements, but to help lead and organize them. Especially now that so many new folks have joined the ranks of protesting and organizing, those of us with experience are a huge asset to the fight against Trump and his policies. However, I am rarely able to put this knowledge and experience to work in organizing and other spaces because of my disabilities.
I am that person that cancels more plans than I keep, and am a frequent no-show at events I have been looking forward to for ages. Like more than 40% of Americans, I have a chronic illness. In fact, I have several. As an activist with chronic illnesses that keep me in bed a lot of the time, I have had to find ways to get involved in movement organizing and activism that are accessible to me, and I know I am not alone in this. There are tons of ways that we, sick folks, can be useful and even leaders of movements, but sometimes we need to be more creative. Sick and/or disabled people have a lot to teach currently abled folks and though there are a ton of access barriers, we owe it to ourselves and social and political movements as a whole to do what we can.
I could write a book about the ways that people with chronic illness can participate in activism (and I am), but I want to particularly focus a kind of organizing that I have found to be one of the hardest areas to crack: participating in the planning and execution of events, including protests and rallies. While of course access issues are always important, it’s not enough for sick and disabled folks to be able to attend events, we should also get to help plan and lead them. I am speaking for myself and am starting from a place of my own limitations, and of course what may be accessible for me may not be accessible for everyone. Also, none of this is meant to be prescriptive to sick people themselves, and I want to affirm that it is completely okay to not participate in these kinds of events if you don’t want to. Not everyone with a chronic illness experiences these kinds of limitations, and there are lots of people who do not have chronic illnesses who may benefit from these ideas.
It is crucial that sick and disabled folks are not only members of movements, but leaders as well. It is not enough to ask, “how can we make our meetings accessible?”, but we also need to ask, “how do we make our movements accessible? How do we make space for sick and disabled folks to teach and lead?”. Here are a few ideas to make in-person activism, leadership, and organizing more friendly to folks with chronic illness and disabilities that make it difficult to leave the house and attend things:
- Backup presenters/facilitators – Chronic illness often means having to cancel plans. It may not be that big of a deal to not show up to an event organized by someone else (though those should be accessible as well). But if you are expected to facilitate, speak at, or lead an event, your absence will probably be noted. One thing that has worked for me is co-facilitating. That way if I was too sick to make it, my co-faciliator could facilitate by herself.
- Let people know in advance – I also would let everyone know in advance, either in person or through email, that I had chronic illnesses and that I may need to cancel at the last minute. I would also let people know in advance the manner that I would make this information known (e.g. through email sent at least an hour before) and let folks know they should check their email. (Make sure email is accessible for folks, if not you or someone else can set up a phone tree). That way there is an understanding that cancellation is a possibility and it sets the tone that needing to cancel is an expected part of life and not a big deal.
- Skype-in option – With technology there are tons of ways that someone can be at an event without needing to physically be there. Take advantage of the ways that computers (and phones) can make things accessible for people who are not able to physically attend.
- Conditions of the meeting/physical space – Chronic illness and other disabilities can mean being sensitive to things that other people do not notice. For example, I am unable to be outside during the day, and am also sensitive to cold and heat. It is also super common for sick people to have chemical sensitivities, or to need to sit down. Be extremely open to when someone tells you these limitations, there are often other people who have similar issues that are too shy or scared to mention them.
- Take on other work that sick people need to do– In chronic illness parlance, these are often called “spoons,” from Christine Miserandino’s spoon theory. Essentially, spoons represent a finite unit of energy that a sick person has to get things done. Grocery shopping may take a spoon, childcare another and before you know it, you are out of spoons to go speak at a meeting or organize a boycott. You can help a sick person have enough spoons for activism by helping them save spoons in other areas. This tends to work best if you have a relationship with someone already, but so much of my own time and energy is taken up by things that other people could do for me, such as grocery shopping and chauffeuring kids.
- One time events– I prefer to organize one-time events rather than re-occurring things because it feels more doable for me. The downside is that if I need to miss or reschedule this event it can be more of a pain in the ass, the upside is that after this event is over I can rest for as long as I need to before planning something else.
- Schedule– Lots of people with chronic illnesses tend to have a time of day that works best for them and their abilities. For me that is the morning, for others it is later in the day. Trying to find a time that works best for the people that will be the most likely to miss the meeting otherwise can help sick people participate and lead.
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- Location– The gist to all of this is the understanding that not everyone is similarly situated and we should all try to help make it work in the places that we have more ability to accommodate those with less, and those of us with less should try to demand this when we are able. Can the meeting be at the sick person’s house? Or rotate between the two sick people in the group? Keep in mind this doesn’t meant that it needs to rotate among all members of the group, we want equity not equality. If you are not sick or disabled you will probably be inconvenienced and that is something that you will need to deal with and work out your feelings about with other abled folks. If you prioritize your convenience over including sick and disabled folks in the work then you should step back and examine your own ableism.
- How Necessary are In-Person Meetings?– We have all likely had the experience of attending a meeting that really did not need to happen. Making the time and energy to attend a meeting may not be that big of a deal to well folks, but it may be for a sick person. Is it a small decision that can be made by one person, keeping the broader objectives in mind? Can the conversation be had over phone, email, text, or chat? Be judicious when scheduling meeting and also put in place subcommittees and other structures that reduce the need for time consuming in person meetings.
- Life Happens – One of the biggest challenges is changing activist culture to be more compassionate towards the things that happen in people’s lives and bodies. Even the healthiest person can get sick, or have a family emergency. We need to prioritize people and be creative about getting the work done. Burnout is a huge problem for activists and even healthy folks need to think about these issues when they are organizing.
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Clashing access needs will happen, especially if you are doing this right and there are lots of sick and disabled people involved in leadership and organizing. There are not simple answers except to be flexible and creative and listen to disabled folks when we tell you our limits or barriers.
A crucial caveat: There is a fine line between trying to work with someone to help them be able to attend something or take on a leadership role, and pressuring them to do something that they may not be able to do. While it can be difficult, at its core organizing and activism is about relationships (including relationships with government and institutions) and navigating those relationships in a way that is beneficial to the end goal. Me and a lot of other people with chronic illnesses that I know like getting invited to things and want to keep being invited even if we have turned down every invitation in the past. I also like when people ask if there is a way they could make it possible for me to attend (and it’s even better when they have concrete ideas). However, it is also difficult to say no, especially to things that I want to do but my illnesses keep me from being able to do. So, when someone says “no” you should respect that, and only ask again if there have been material changes that may make the event more accessible to them.
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[Feature Image: A sepia toned photo of a person sitting with their laptop on their chest. They have short bangs and are looking at the laptop screen. They are in profile. Source: Alessandro Valli]