So I’m a little behind, but better late than never. My top 10 reasons I love zines:
1. I love working with my hands, there’s nothing better than making something with paper, scissors, and glue.
2. The community is awesome. Meeting other zinesters, especially in real life, has usually led to instant friendships.
3. Zines are so diverse, in style and in quality. They can be made by professional artists on expensive software, or by teenagers with nothing but a pen and their school’s copy machine. Anyone can do it!
4. A good perzine can give you a window into another person’s life and experiences, in ways that few other mediums can.
5. They’re cheap.
6. They can potentially last forever. I mean, we’re still finiding art and epic poems from thousands of years ago, maybe someone will find that anthropomorphic Hot Topic animals zine?
7. Almost all of them are unique and rare. I have zines from people who made under 100 copies.
8. When DIY zines teach me how to do things I would never have looked into myself, like making lye soap or building bike racks out of pipes.
9. You have so many more creative options with zines than you do with books. They’re not about being easy to print a million copies, they are labors of love and it shows.
10. The vulnerability of putting yourself on paper and then sending it out into the world.
From my own experience only, here are a few simple tips for those talking with, working with and befriending folks with chronic illnesses— especially invisible illnesses. Some of these could apply to people with other disabilities too— but not all of them. Please do consult materials more specifically oriented toward disability to enrich your knowledge of that, as well. There is crossover— some folks with chronic illnesses are disabled, and some people with disabilities have chronic illnesses— but not all disability is also illness. For example, using a motorized chair for mobility may or may not be related to illness. I’m not equipped to address more than a fraction of these experiences.
Tips for Respect: Understanding Folks with Invisible Illnesses
- Don’t argue when someone comes out to you as chronically ill. Don’t say “But you look so healthy!”
- Don’t jump to offer solutions that you have heard of from a friend, on the internet, or on the news. People with chronic illnesses have tried, or are trying, many solutions to get better. They may be damn sick of the process but are doing their best. They have heard of a big portion of the miracle cures out there. There is no one who wants it more than they do. You are not likely to be the golden ticket to their wellness. Leave the magic-solution-to-everything that you heard about recently and engage as a human being.
- In a similar vein, don’t criticize lifestyle. Try to refrain from pointing out that the person could do better for themselves. Again, the challenges faced by the person are probably beyond your knowledge.
- Take them seriously. A chronic illness is not just like the bad flu you once got over or the time you got depressed for a few weeks. Having a chronic illness changes one’s life in radical ways. It often implies grief and loss.
- Don’t worry if you don’t have anything to say, or you can’t relate. Acknowledge what the person is saying and indicate that you hear them. Often, folks with invisible illness keep their complaints and frustrations bottled up inside. If you can, make space for the person to vent if they need to.
- If you yourself are up for it, make a standing offer of real help. Offer to lighten the burden. It might not be accepted— for a variety of reasons. For example, I hate to feel like an imposition — so its hard for me to accept, say, an offer of free housework or dinner as much as I might want these. (For me, I’d love it if more people offered in ways that didn’t make it seem like a burden to them. For example, a trade, or something we do ‘together’ where they do most of the work. Even when I am exhausted and in pain, I love to cook, garden or work on projects— I just can’t lift or move so much.)
- Ensure people with chronic illnesses, or disabilities that affect access, can participate fully in decision-making even if they cannot do the same quantity or type of work as others. In groups, people with fatigue, pain, or mobility issues cannot always express their commitment through attendance of meetings. Recognize that there may be other, equally important indicators of commitment and investment besides the ones able-bodied and non-chronically ill folks typically display. Be open to meeting via teleconference, or conducting some conversations online. Take input from these channels just as seriously as input from those who can be physically present.
- Keep in mind that bike culture, commenting on the evilness of cars, and disparaging television and other sedentary activities are all a lot easier to do when you are fully able bodied.
- Consider low-energy activities, too. Try being open to being with someone and not doing much. Just talking, watching a movie, or eating a simple meal or takeout can be relaxing and valuable. It can be very stressful for a chronically ill person when it seems like maintaining friendships requires way too much energy.
- Remember that you cannot see pain or fatigue. Ask. Listen.
What would you add to this list?
I feel like point 5 is possibly the most important of these. I feel like often people feel like they’re good at relating to others so if they can’t relate it’s the other person’s fault (or something). It seems like this is where all the ‘I know how you feel, I had x five years ago’, ‘I’m sure you’d be fine if you just did x’, etc. comes from. In reality, they just haven’t had the right experiences to enable them to relate. It’s okay to say ‘I don’t know what you’re going through but I’m here if there’s anything I can do for you’. That’s a lot more helpful - and honest - than trying to dredge up some incident that happened years ago. Honestly, I’m glad people can’t relate (I’m always both happy and sad when I meet someone who can) so do us both a favour and just be honest about it!