Originally published on The Establishment and republished here with permission.
Winter is lonely.
While winter is difficult in the best of times, it’s significantly more so for those of us who are disabled.
Between inaccessible sidewalks covered in ice and snow, chronic pain flare-ups triggered by cold temperatures, and early sunsets eliciting depression, many of us end up stuck at home.
As somebody with a severe mental illness who’s also spent several winters – and autumns and springs – housebound with chronic pain, I’ve had many opportunities to observe the ups and downs of these particular conditions.
Certainly, I’ve found much joy in being indoors all day every day:
- Writing a million words a day
- Reading hundreds of books
- Witnessing sunsets that look like rose quartz carnelian lapis lazuli bleeding through the sky
- Connecting with weirdo cripples near and afar and
- Not being street harassed
And I’ve also fallen into such deep wells of loneliness that I became dissociated and disconnected from reality.
Even for those who are not fully housebound, mobility becomes severely limited when it snows, and our participation in friendships, communities, and public spaces, as well as our ability to do boring survival stuff like run errands, is hindered.
Remember, while some of your disabled pals might look cute and productive online, we’re struggling at home.
Initially, as I was adjusting to becoming – more or less – housebound, the sheer aloneness of it all triggered some of my worst symptoms, including paranoia, suicidal thoughts, and intense rage and jealousy.
I was also sincerely frightened. Frightened that my pain would get even worse, frightened that my friends would leave me. Those things did happen, but I’ve survived thus far, I’ve learned a hell of a lot, and I want to share some of it with you.
Before offering suggestions, I’d like to note that many disabled folks are either too shy to ask for support, overwhelmed with unlearning internalized ableism and navigating our culture’s insistence on self-reliance, or simply burned out.
When conditions are chronic, and when we’ve been let down by friends in the past, many of us, myself included, are weary of reaching out.
If you have disabled friends – and most of us do, I hope – I can assure you that they’ve experienced at least one of these barriers to asking for support, if not all of them.
Instead of waiting for us to reach out, please dare yourselves to reach in.
1. Bring Us Food
Whether you’re gifting us with a take-out or delivery meal, carrying groceries, or cooking at your home or ours, disabled folks need warm, healthy food in the winter.
We’re often not able to provide it for ourselves.
Ask your friends if they have any food intolerances, and show up accordingly.
Consider either gifting us with food, or working out a budget with us so we can give you cash (or a trade, like editing services or a tarot reading!) to pick up necessities. Personally, I’m fond of burritos, including yam or pulled pork with all the toppings!
I enjoy veggie rotis and lamb rotis with extra peas and broccoli! And I’m often in need of vegetables, fresh greens, bananas, and avocados galore. Maybe cantaloupe, kiwi, and watermelon, too.
Chopping fruits and vegetables isn’t always possible with chronic pain, so pre-cut and pre-packaged is a better way to go. Many disabled folks are poor, so it’s wise to check in and see what your friends can or can’t afford.
For example, I have perishables delivered from Walmart, which means I eat a lot of discounted oatmeal and Mr. Noodles, but fresh produce delivery services, much-needed as they are, are beyond my financial means.
2. Come Over and Read with Us
Sometimes we don’t need intense conversation (though often we do!), but just company.
I read 121 books in 2016, but haven’t had a lot of pals to discuss them with, and I’m unable to participate in book clubs for many reasons, multiple disabilities being at the top of that list.
But I’ve been underlining, taking notes, asking questions, and dreaming. And I’ve been writing. I spend a lot of time in libraries, but that’s not a possibility in the winter.
Reading different books in quiet company, chugging coffee together, interrupting the silence now and then to read a favorite line aloud or discuss an idea the author is describing, would be dreamy.
3. Send a Text
Send a text just to say, Hi, I’m thinking of you.
We don’t have to be BFFs. If you haven’t talked to someone for three months, six months, a full year, please consider texting them to let them know you value them and haven’t forgotten about them.
Magic will happen.
To be alone at home for such an extended period of time feels, and often is, a form of abandonment.
It’s easy to believe you’ve been forgotten. There’ve been many times in my life when I’ve received a short text with a few cute little emojis at a moment of despair when they were needed the most. You could be the person who sends that text. (And hell, maybe we could dare each other to (re)learn how to talk on the phone as well.)
4. Text to Say More Than Just ‘Hi’
Let’s have real, tough, vulnerable, magical conversations.
Let’s share what’s going on in our lives beyond small talk and the weather (even though I actually love discussing the weather, and it’s something I’m doing this very moment).
Let’s ask each other difficult questions. Let’s ask each other about our dreams and then work toward making them come true.
5. Set Writing Goals Together
I’m lucky to have many friends who are writers and zinesters.
Whether or not we can be in the same space, we often share word count goals, writing prompts, and words of encouragement.
Alone, but together, we get stuff done.
Writing can be lonely work. It makes a difference to have a few pals to check in and exchange ideas with.
6. Shovel and Salt Our Sidewalks
Many, if not most, of us are living in buildings with negligent landlords (to say the least).
Whether or not other tenants in the building understand that we’re disabled and choose to take these small tasks into consideration is besides the point because many don’t, nor should they have to.
While general maintenance of the building is the landlord’s legal responsibility, in my experience, it’s been rare to have a landlord who keeps up with ordinary chores.
Have you ever tried to push a wheelchair through snow? Have you ever held your cane’s icepick toward the ground, only to watch it slip out from under you?
Clear sidewalks are necessary for the safety of everyone, especially disabled folks.
A small path cleared from our entrances to the sidewalks (and garbage bins!) is a lovely gift to give a friend. Remember to clear the pathways at your homes and workplaces, too.
7. Please Give Us as Much Accessibility Information as Possible
A few years ago, I created the term “accessible physically, financially, and emotionally” as an attempt to define and navigate various forms of in/accessibility beyond ramps.
While exploring this term is beyond the realm of this specific piece, you’ll find it useful to think of these terms when describing spaces to your friends.
Are there stairs? Is it scent-free? How much will it cost? Will there be seats to rest our sore bones?
These are just some basic, beginning questions to ask. Whether you’re inviting us to a public event or into your own home, these queries are crucial.
8. Support Our Work
Disabled folks are creative as gosh!
And many of us write compulsively – not because we’re getting paid or getting paid well, but because we must.
If you like our writing, a) tell us so, b) share it, and c) keep clicking on our Paypals, Cash.Me’s, and ko-fis.
I am on social assistance, and many of my friends are, too.
Although it’s recommended that one spend 30% of their income on rent, most disabled people spend significantly more than that to live in substandard housing .
For example, I spend 75% of my income on rent, and rent in small towns and cities alike is only getting higher. That means, literally, every penny and every dollar count.
Be kind, be generous, show your appreciation! (But also, don’t just value – or co-opt – our work. Value us.)
9. Our Pain Must Be Acknowledged, But It’s Not the Only Thing We Can Discuss
I write about pain often, but I don’t love discussing it in person because it often turns into a trigger-y cryfest for me.
Experiences of chronic pain are not only physical, but have emotional, financial, and spiritual repercussions as well.
For those reasons, it’s a complex and stressful topic.
If you haven’t experienced debilitating pain resulting in limited mobility, as well as the misunderstanding and invalidation inherent in the medical health-care system, please know that it can be a sensitive topic.
If we don’t want to talk about it, please don’t take it personally.
10. If You Say You’re Gonna Show Up, Please Do Your Best to Actually Show Up
We all cancel plans for various reasons, and that’s okay.
But when folks say they’ll be able to give us rides or help carry groceries, and then stop calling, this has devastating consequences on our mental and physical health.
Here’s another term I recently created: “inconsistent (or intermittent) interdependence.”
In cripple communities and disability justice spaces, we talk a lot about interdependence. But because I’ve never felt a sense of belonging in a particular community, or experienced consistent and reliable care and support, I haven’t been able to relate to the interdependence model.
Instead, I’ve labeled it as inconsistent, which is more true to my own experience, but leaves space open for possibilities – sometimes friends, new and old, really do show up!
This list is necessarily incomplete.
I encourage you to try a few of the suggestions, see what works and what doesn’t, and write your own lists. Talk to your sick and disabled friends.
Talk to each other. Stay warm, stay weird, and keep living.
Maranda Elizabeth is a capital-C Crazy writer, zinester, witch, identical twin, high school dropout, cane-user, recovering alcoholic, cripple-goth, and non-binary amethyst-femme. They write about recovery with BPD, complex-trauma, and fibromyalgia; writing, creativity, & friendship; politicizing recovery; magic & witchcraft & Tarot; self-care, support, & $upport; and surviving poverty. They’ve been writing zines for fifteen years. In 2012, they published an anthology, Telegram: A Collection of 27 Issues, and in 2013, they published their first novel, Ragdoll House. Maranda is currently working on their next novel, We Are the Weirdos, and a book of non-fiction, To Be True to My Own Weirdnesses. They also offer Tarot readings for misfits & outcasts, and they publish a fortnightly column on LittleRedTarot.com called See the Cripple Dance. Read more of their work at marandaelizabeth.com, schoolformaps.etsy.com, and @MarandaDearest on Twitter.”
Cee Lavery is an illustrator, comics-maker, arranger of words, and sometimes-violinist. Their work is chiefly concerned with bodies, feelings, adventure, and magic. Cee is self-taught and continues to teach and learn whenever and however they can. You can find more of their work at ceelavery.com.