Enjoyed this post from Autistic Hoya about How Not To Plan Disability Conferences. Some of these tips are relevant to anyone (like, say, a Pagan ritual or festival organizing group):
4. Rethink who is on the planning committee. Don’t invite people as tokens — actually talk to disabled people who you know and ask them to take a substantive leadership role in the planning of your conference. More than one. More than two.
,,,, include easily findable information about access and accommodations.
… Establish a low-fragrance policy. Establish a no flash photography — and no photography of any kind without consent of those in the picture — policy. Mention if there will be a break room where attendees can take a break from the stimulation. (Seriously, that’s not just autistics; it’s also people with anxiety, people with physical disabilities or chronic pain, people with depression, etc. etc. etc.) These are all little things that you can do for minimal cost, and that advertising and talking about publicly can send a strong message that you’re expecting and trying to be as welcoming as possible for disabled people.
… Speak up if someone else in your planning group is saying or doing these shitty things. If they’re saying them in front of the whole group, and you know they’re wrong, and you have the ability to speak out, then do. That’s called practicing good allyship. Because if disabled people aren’t in the room to begin with, then all we can hope for is someone who’s in there to say something.
Galina Krasskova (whom I once had the pleasure of meeting) writes about a controversy over the use of the word “lame” to refer to the smith god Hephaestus (Vulcan, for you Roman fans).
She starts by pointing out that the Norse tradition, too, has its deities with disabilities:
I practice a tradition that has many impaired and disfigured Gods: Odin is missing an eye, Heimdall by some accounts his ears, Hodr is blind, Tyr lost a hand, and other Gods are scarred and so on and so forth. There’s power and tremendous wisdom in each account of how these Deities became as They are. Sometimes, as with Odin, the act of disfigurement is a hugely important part of His mythos, one of the defining moments of His nature as a God. So when I come upon a Deity that has specific epithets that refer to, as in this case, lameness, I pay attention.
While it would be less than polite to refer to a person with mobility issues as lame, Krasskova argues that the use of the word in describing the god is a different case:
Homer presents Him as having crafted delicate, almost sentient automatons (the first AIs!) for instance, and almost never refers to Him as the “lame God” without also referencing His strength and vigor. It’s as though the two are inextricably linked. For this reason, not to mention simple respect for these Gods, we ought to be careful before we strip those holy titles away.
Like Krasskova, I am pleased that our gods are imperfect, for that helps us to understand our own disabilities and abilities. One thing I find troubling is that imperfections — lameness, missing limbs or eyes, scars — are far more common in historical descriptions of male deities than female. This offers us — Krasskova, me, and other Pagan women with disabilities — a challenge, to create our own mythos and role models.
I started this blog a few years ago because I grew frustrated with a well-known Pagan festival. I was considering going, but was put off by multiple descriptions on their Web site of workshops and intensives with phrases like “Not recommended for persons with mobility challenges.”
I had a respectful conversation with a leader of that event, and moved on with my life. I’ve become a great deal more disabled (because my hereditary condition, lipedema, is progressive and incurable, yay). For various physical and personal reasons, I’ve become less connected to my fellow Pagans of late. Part of the reason is this same issue of inclusion (which, I’ll note, is still an issue with this same event, although I think things are improving and some individuals involved with it are specifically kind and welcoming).
Words have power. Pagans know this. A well-written ritual has a different effect from a clumsy one. Many of us think carefully about what words we want to use to describe ourselves, often to the point of extremely minute differentiation. That’s why we do rituals with a “chalice,” not a “beaker” or a “mug.”
When you say “People with health or mobility issues should not apply for this event. It is physically demanding, and we will get dirty and wet at times,” I wonder what it is about my disability that precludes me getting dirty and wet, sharing in the experience as my body permits. When you say “Not recommended for persons with mobility challenges,” I wonder how you could do the same work in a way that would give me a chance to contribute.
As I’ve written elsewhere, being physically limited does not prevent me from connecting to the archetypes of warrior and leader, aspiring to courage and hope, offering my energy and intelligence and imagination to help sustain the people around me. Put a dragon in front of me and I’ll slay it. So who are you (a metaphorical “you,” not you personally) to tell me I can’t pick up the axe?
Likewise, when you tell me not to apply for your shamanic workshop because you’ll be spending the night outside in the leaves, I say “What makes you think I can’t do that?” Only I won’t, really. I’ll just figure I’m not welcome.
A wise friend once gave me the phrase, “If you don’t want me, you can’t have me.” If you don’t welcome people of varying levels of ability, you’ll never know what we might have contributed, what we might have gained, what we might have shown you.
Some people in the Pagan community get it. They design gatherings with flexibility built in. They communicate clearly but inclusively — “We will be doing X” rather than “X kind of people should not apply.” They are more interested in providing a positive experience and encouraging their fellow Pagans than in excluding people whose bodies don’t meet their preconceived notions. They welcome questions and find ways to work around limits.
It’s not a specificaily Pagan event, but I will once again point respectfully to the folks at Burning Man, who neither encourage nor discourage people with disabilities from attending their physically demanding event. They just lay out there what the environment is and what you need to do to have a positive experience in it. By letting prospective participants make their own decisions, they convey respect for people with disabilities as people first, disabilities second.
I know that when I was more able-bodied, I wanted to be inclusive of people with disabilities, but I understand those issues in a very different way now that I am one of them. And so to my fellow Pagans I once again offer an invitation to include. Here’s a guide that might offer some concrete ways to use the power of our words to welcome.
Oh, joy. The death of David Grega, Pagan podcaster, father to baby Mallory and a unique and well-loved voice, has sparked a call in some quarters for a “conversation” about “health.”
Dave, in addition to his other qualities, was fat. We don’t know what caused his death of heart failure at 27, but some people think they can pin it on his weight, even calling obesity a “taboo” in the Pagan community. As a fat person who is also Pagan, I think I have something to contribute to this conversation.
No one, of any size, should be unwelcome in Pagan community because of his or her weight or health issues. When I found Paganism 20 years ago, the Venus of Willendorf image spoke beautiful volumes to me about a path where I could find acceptance and feel safe enough to truly connect spiritually. I want every person out there to feel that same acceptance. You DO belong; if anyone indicates that you don’t, it is they, not you, who have the problem.
There is nothing wrong with bringing health, healing and well-being into our focus. By all means let’s try to serve locally grown food at rituals, incorporate gentle movements in gatherings, and support one another in forming stronger relationships with our physical bodies. But let’s also make sure we include those who find some kinds of movement difficult or painful, and respect that each of us may be at a different point on our journeys. Just as there is no One True Path toward Pagan spiritual growth, there is no One True Way to Be Healthy. If you have benefited from blue-green algae or going vegan or naked underwater Pilates, that’s great, but respect my right to make the choices that are right for me. I don’t owe you or anyone else an explanation for my weight or my choices.
Fat people are PEOPLE. Pointing out “for your own good” that someone is fat is an attempt to control and undermine her. If you truly are interested in what’s best for her, listen to her, accept her and care about her.
There is no reliable way to turn a fat person into a thin person. Ninety-five percent of all weight-loss efforts fail. On the other hand, many people find lasting ways to change their strength, stamina, balance, and sense of well-being for the better. When we remove our focus from the waistline, studies find that active fat people are healthier than sedentary thin ones, but many of us find the stigma about our bodies so paralyzing that it is difficult to take the first step of going for a walk or bike ride, or joining a gym.
We don’t have to be like everyone else. There are a million people out there who want to tell me how ugly and useless and unlovable I am. Pagan communities have the opportunity, the challenge, to do things differently, to make safe spaces for people of all sizes to be ourselves and connect with the beauty in each of us.
If some of these ideas resonate with you, you may be interested in the Health At Every Size (HAES) movement. I’m proud to be a minor participant in this movement. Here, for instance, is a video I helped produce in response to “Biggest Loser” commercials that suggested fat people couldn’t have love in their lives:
I’d like to end this post by quoting Dave’s own words, as posted in an online comment to Cara Shultz:
I already live every weekend like it’s my last. Being in a car accident in 2003 that should had been fatal taught me that… now living with 2 unrelated diseases known to make people keel over and die at some point (and just put me in the hospital for a bunch of weeks) just re-enforces my mortality.
It’s an interesting week when one is saved via surgery from a close brush with death and then a week later is given a confirmed diagnosis of a disease many take to be a death sentence… and realizing my emotional reaction is more about “okay, what’s the treatment going to involve” rather than “ZOMG, there’s so many things I should have done with my life.” Not because I’m an excessively results-oriented individual (which I admittedly am) but mostly because I manage to live without regrets, even if that means having a few bridge burning parties along the way.
If there’s something you’ve been meaning to do for a while, start planning to get it done. If there’s something you don’t want to do – find an honorable way to stop doing it. If someone needs something and you like them and you can more than afford it (and they’re not a needy do-nothing)… give it to them. And for gods’ sake – don’t forget to tell people how much you value them before they keel over and die. Funerals are not a particularly useful time to tell someone how much they meant to you.
I notice most people’s fears about death have more to do with regrets than anything else.
Meredith, at Witchtastic, has an excellent post from her experience as a Pagan and mother to a child with special needs. She makes some interesting points about creating ritual experiences that can include her boy, who has sensory integration issues:
- Heavy work — some kids find it comforting to get their whole bodies involved in a process like casting the circle, pushing on walls or otherwise getting their physical selves deeply immersed in the experience of creating the temple.
- Inclusion despite limits — Meredith’s son is nonverbal, but can wave hello to the elements or the gods. She uses a push light for “fire” to give him a way to safely invoke that element.
- Respecting where he is — if he’s not up for doing ritual at a given time, he doesn’t have to.
I know many Pagan parents struggle with how to keep their own spirituality alive while respecting their children’s individual needs and abilities (whether or not they are “neurotypical”). It’s nice to see a voice publicly speaking up for inclusion.
Last fall I joined a movement called The Great American Apparel Diet, in which participants refrain from buying new clothing for a year. It started as a way to curb my impulsive spending, and has wound up making me more mindful on a number of levels. Hence today’s post, Who makes your clothes?
As a disabled person, I value clothes that are easy to put on and take off, easy to care for, and help conceal the figure flaws that come with the territory for my condition. As a Pagan, I value clothes that feel comfortable and beautiful on me. Because I work from home, I have more freedom than many to choose the clothes I like for every day.
For some Pagans, of course, part of the charm of the religion is that whole “naked in your rites” business. Between snow and black flies, Maine is a tough place to try to do that. What do you wear? What would you wear if you could?
I am not the sort of person who goes to Burning Man. But I know lots of such people, and in the context of a conversation I had occasion to look up the Burning Man Web site.
If you haven’t heard of it, Burning Man is a large festival, or as they call it, “experiment in temporary community,” which takes place in the Black Rock Desert of Nevada every year. Participants create art, music, theme camps, and communities, and then they pack it all up and go away again. The challenge is that along with participating in the event on whatever level pleases you, you also have to provide for your own survival in a very challenging environment, including your own food, water and protection from the sun.
As I say, I’m not a Burning Man sort of person. My kind of festival takes place in a nice hotel with modern plumbing. But I was impressed by the Burning Man page on Wheelchairs on the Playa. It neither encourages nor discourages people with disabilities from attending. It just tells you what you need to know to have a good experience. Planners and promoters of Pagan festivals might do well to take this attitude to heart.
Incidentally, if you happened to see the movie “The Eagle,” you will notice the character Marcus Aquila (played by the very nice-looking Channing Tatum) offering prayers to Mithras, who was considered a “soldier’s god.”
Buy the Mithras Reader
from your local independent bookseller or, if you don’t have one, at lulu.com.
I doubt anyone reading this blog has gone through life without experiencing the feeling of being different, perhaps even being excluded or bullied or abused for your differences. I think that may be one reason so many of us resonate to the “It Gets Better” project, started by columnist Dan Savage to try to stem a wave of suicides among young people who were (or were thought by their peers to be) gay.
Likewise, you don’t have to have ever carried an extra pound on your body to understand why Maura Kelly was wrong when she wrote in Marie Claire about how much she hates watching fat people walk or kiss. But you have to be a pretty awesome person to realize that Kelly’s hatred comes from a place of fear and self-hatred, as the awesome Plumcake of Manolo for the Big Girl does in this excellent post. Sample quote:
Other people don’t need to be bad to make you feel good. Other people don’t need to be ugly for you to be beautiful. It’s not a zero-sum game. Never has been.
And I’ll warn you that this video made me cry like a baby, and you should totally watch it anyway, and share it with everyone you know who is, or has been, hurt by others for being different.
If you’re reading this and other people are making your life miserable because of your religion or your race or your sexuality or your disability, please know that this is not forever, that you can live to prove everyone wrong about you, just by pursuing happiness on your terms. But the key word is “live.”