Where’s Whoopsie #13: I am the 1 in 5

Happy Fourth of July from one of the 1 in 5. Which 1 in 5? Well, probably not the one you are immediately thinking. Yes, I am one of the 1 in 5 Americans who experience mental illness in a given year. I’m also one of the almost 1 in 3 Americans living with multiple chronic conditions (and one of the 30 million of us living with five or more diagnoses!). However, I’m talking today about being one of the 1 in 5 Americans who have gone to a protest since 2016.

Our country was founded on ideas of Life, Liberty and the Pursuit of Happiness. Those are being denied to too many of our countrymen, including members of my own family. I believe it is patriotic to hold our leaders accountable for being the country we claim to be. My advocacy has taken place in intimate courtrooms and on huge street corners. Because I am, however, also one of those other 1 in 5s and one 1 in 3s, protesting isn’t always the most straightforward thing. Thus, this Fourth of July, I thought I’d post about how I have pulled off attending protests with ADHD, C-PTSD, social anxiety, depression, migraines, dysautonomia, Ehlers-Danlos Syndrome, IBS and just the general B.S. that – while they aren’t evil incarnate like the Republican leaders willingly setting Americans up for injury or death by dismantling our social safety net – even the well-intentioned Progressives who arrange protests are still often so very clueless about how to make protests inclusive for differently abled Americans.

Thus, I present Lavender’s Fourth of July Guide to Protesting as a Spoonie

Don’t: A lot of this blog boils down to “do as I say, not as I do.” Many of my readers might never be up to handling large crowds with their social anxiety, or leaving their bed at all. That’s totally okay. There are other ways to contribute. Readers can write or call their Congressmen to voice support for policies that protect the vulnerable in our country. For the socially anxious, text apps such as ResistBot make it so you never even have to interact with a human at all! Most of my readers write blogs, which means you all are good writers. Consider writing op-eds or letters to the editor for local papers, or, for the more ambitious, personal stories of the effects of cruel policies in your lives for sites like The Mighty, Medium, Huffington Post, or even The Atlantic’s personal stories section. Yes, a lot of these sites skew more liberal, but, as I mentioned before, it’s important that even Progressives still be educated on what issues face the populations they advocate for. Personal testimony can help ensure theoretical Progressiveness turns into practical Progressiveness in the policies they advocate for. Sign a petition on change.org, and/or, if you are financially able, volunteer your specific skills (art, writing, data analysis, etc.) to a local grassroots cause where you can help out in the A/C at a time of your choosing. Finally, of course, make sure you are one of the 2 in 3 Americans who vote, especially if you were previously one of the 1 in 3. If that silent third stopped being silent, special interests would have a lot less power in this country. Now, assuming you don’t want to be a sensible spoonie and stay home, what else can you do to ensure a safe and productive protest?
Pick Your Time of Year Carefully: I don’t always make smart choices, but even I know that standing up for long periods in hot weather is certainly not the smartest thing when one of dysautonomia’s primary symptoms is heat intolerance. I have gone to protests, but only during spring or fall. I know that I only have a chance of participating when it isn’t hot out. I’ll be sitting on the sidelines for most of this summer until it becomes human-livable weather again. Others who read this blog might have even more narrow temperature ranges. Obey them. We’re stuck with our current leaders until at least 2018 midterm elections. You’ll have another opportunity – probably the most important opportunity – to protest in October or November. Follow your body.
Bring Mobility Aids (Or at Least Lawn Chairs): I get that it sucks to be stared at when using mobility aids. It’s embarrassing to have to flash a pass on a train asking for a seat on the way to the protest. Do it anyway, if you can, even if you are still only in the stage of spooniedom where you rarely bring them out. If you don’t have mobility aids, bring a soft collapsible lawn chair with a cup holder. A protest isn’t a Fourth of July picnic, but standing up really is no picnic. It’s a little non-standard, but no one at the protests I’ve been to has really said anything. I’ve followed New York subway rules and made a little sign that also just says “I have a chronic illness, please offer me a seat.” (I’ve also literally fainted in Penn Station in New York and had no one notice, but I swear people at protests have been nice to me so far.)
Stay Hydrated and Bring Snacks: The collapsible folding chair has a cup holder for a reason. Hydrate, hydrate, hydrate. Think about electrolyte solutions and bringing safe-for-your-diet snacks for energy, even if you don’t normally have the dysautonomia that makes water and salt a formal part of your treatment plan.
Rescue meds, Thermocare, and Sunglasses: Think of attending a protest like travel. You want your purse to hold everything you’d need if you got sick in an airport. Bring rescue meds for acute pain or nausea symptoms, Thermocare patches since you can’t bring your plug-in heating pads, and massive sunglasses/hats to protect yourself. Think also fans – portable electric or old school paper depending on your preference – and loose, comfortable clothing with sensible shoes.
Bring a Buddy: No matter how well you prepare, you will be exhausted and pushing yourself. You need a friend or a loved one there to look after you, and that person needs to be someone you trust. Preferably, that person needs to be someone who will also carry the stuff you are bringing with you. For me, that person is, obviously, my Partner. You could also ask a friend or a parent, as long as they also believe in the protest topic. If you can’t think of anyone, there are a few organizations like #MarchingWithME that do get it, and they will volunteer someone who is physically able to attend the protest to speak for you as well. There are also some disease-specific protests like #MillionsMissing and the Disability March, where you can protest specifically through your absence. Finally, there is an increasing call to count online protests, such as those occurring on Facebook, in official crowd counts. Attend a virtual protest and speak to your local officials about why differently abled folks need these types of protests to count since we can’t always attend the traditional way.
Find the Smaller Protests: Yes, there is something exhilarating about being among a crowd of 50k, but, let’s be honest, there will be no place to set up your chair! There are protests happening all the time, and, for spoonies, it’s often a more sensible option to go to the smaller ones that may only have a few hundred people. Meetup.com and Facebook are great places to find small local protest communities. More importantly, many of these local groups also speak at local political events and make their voice known in local politics. If you are going to show up, being one of three speakers at a city council meeting might have much more of an impact in the long run than just being another face in a crowd where estimates can differ for the size by orders of magnitude between different media crowd counters.
Educate the Organizers: Progressives are a better bet than Republicans for spoonie-friendly policies, but did I mention they can still be clueless? I recently went to a “support” group for women with trauma backgrounds (which will probably be the subject of another blog) that took place on the third floor of an unairconditioned building. I heard one of the leaders say that if anyone in a wheelchair ever showed up, they would consider moving the night or time so a first-floor space could be available. The leader seemed to have absolutely no idea that invisible illnesses even existed, that they were more common among women and more common among those with trauma histories. She seemed utterly clueless that someone could “look fine,” but not be able to climb three flights of stairs. I think I probably accomplished more activism by simply telling her “hey, I can’t climb three flights of stairs even though I don’t always use mobility aids because I have a genetic disorder that causes joint instability and fainting” than I ever have at a protest. I also once attended a small protest for trans rights that was organized on Meetup.com. Being one of the smaller protests – which is truly sad given how at-risk for hate crimes the trans population is, so this is another reason why going to smaller protests matter – I was able to send a message to the protest organizer on meetup.com ahead of time and request that a spot be saved for me in a shady area where I could set up my chair. He was more than happy to oblige.
Get There Early or Get There Late: My prior example leads seamlessly into my next point. If you attend a protest as a spoonie, you have two options: either get there so much earlier than everyone else that you can have time to “camp out” and set up everything you need (see Points 3, 4, 5 above) to be there for the whole event or arrive at the tail end. Arriving any other time is liable to leave you squashed in the sun in the middle of humanity. If you arrive early, you can get a safe shady spot. If you arrive late, you can hang out on the fringes of the crowd long enough to wave your sign, sign a few songs and leave before you physically exhaust yourself. You won’t risk being caught in an impenetrable wall of humanity.
Don’t Automatically Read the Signs, Bring Headphones and Bring A Few Grounding Items: This point applies mostly to those with PTSD, sensory issues, social anxiety or other chronic mental illnesses to where the unfiltered expressions of people – most of them quite loud – could set off a meltdown, panic attack or flashback. Remember, the first rule of self-care is always to practice it. Point 1 about “Don’t Go if It Isn’t Safe” applies just as much to folks with mental illness as physical. If you know you can’t handle it, see alternative ideas above. But, again, if you choose to go, be prepared. Bring a journal, bring a fidget, bring whatever it takes to keep you present if you are triggered. Many of the protest signs are creative and fun and wonderful. Some are viscerally terrifying for those with trauma histories, as they directly reference – sometimes even visually show – the consequences of what the current administration’s policies are doing to the vulnerable. If our country was in a good place, so many Americans wouldn’t be taking to the streets! And, that knowledge can really eff with someone who has been effed with by the system. Politics are a trauma trigger now, especially for folks who have institutional abuse in their histories. Ask your buddy to scan the signs for you and only point out the ones that don’t touch on your personal triggers. Create a visual, simple cue so your buddy knows “It has all become too much and I need to leave.” Make a self-care box and don’t be ashamed to bring it. Scope out the site of the protest in advance and look for areas that are likely to be out of the way where you can retreat if you feel triggered. Bring headphones and music to drown out some of the noise.

Above all, stay safe everyone. Have a wonderful Fourth of July, and raise a glass of whatever cool beverage is at hand this year to the hope for a better year for our country next Fourth of July. Raise a toast to the idea that maybe in the future we won’t need guides to how to protest with chronic physical or mental illness because our country will have finally gotten back on track and be living up to the ideals of our founding.

Oh, and as one final PSA, please always remember to be respectful with fireworks for the sake of PTSD sufferers, children, and animals. Have some fireworks-colored Where’s Whoopsies to celebrate the birth of the U.S.A!