Choosing to Endure:
Service Survival Skills for Those With Disabilities and Sensitivites
"This is not an endurance contest," our prayer leader assured us. "If you feel unable to remain standing, please sit."
Later I thought of the story about an ascetic so driven to distraction by the hub-bub of the city that he took himself off to live in utter isolation in an abandoned cave, only to come hurtling out tearing his hair in despair, his meditations destroyed by the sound of moisture condensing on the walls.
I live somewhere between these two extremes. My challenges are a little more than can be banished by simply sitting, but I refuse to cater so far to my sensitivities that I cripple myself.
So I head out to every service, every workshop, and every lecture knowing that it will be, in some measure, an endurance contest.
I choose to endure.
In this mindset, I can accept my limitations and my successes without the drain of judgement and shame upon myself.
Therefore, in this mindset, I am free to concentrate on the fellowship, leadership, and development that is the whole point of me being there.
What follows is a list of tricks and tips for the diverse many of us who find "Sit still and listen" to be mutually exclusive activities, because the discomfort of sitting still creates a barrier to listening.
One stunning truth: it really doesn't matter if you can't "sit still and listen" because of physical, neurological, or psychological challenges-- the necessary skills of self-support and re-focus are the same.
I am not saying that every one of these tricks and tips will work for you. In fact, some of them are mutually exclusive!
What I am saying, is that, once we begin facing daily challenges, once we need to use strategy to get through or around daily obstacles that most people do not even notice, once we slip beyond the frame of "normal abilities", we go through the same transformation. We become more vulnerable to simple stress, because we are already dealing with the stress of our limitations and have less energy to spare. We become more vulnerable to social insecurity, not only because it is very alienating to be constantly fighting battles that other people do not see or misunderstand, but also because our body language and tone are affected by our battles, communicating frustration or weariness that other people often take personally. We become more vulnerable to depression, because of the exhaustion of ongoing stress, the feeling of social isolation, and the number of "good parts of life" we cannot reach or cannot enjoy when we get there.
The flip side of all this is that, when we are facing daily difficulties, we have a greater need for positive sensory input, social interaction, spiritual/intellectual exploration, irrelevant of the origin of our difficulties. The interaction and exploration is why we are tackling the endurance contest, and positive sensory input is how we can get through that contest.
A) Preparation is half the battle.
1) Find a supportive community
The lovely truth is that Jewish worship is inherently friendly to diverse abilities. As we stand out of sync, murmur, sway, harmonize, and schmooze with the tallitot flapping and the next generation racing about on toddling feet, the individual with challenges or sensitivities may crave most, not a position where his or her own "odd" behavior will not draw attention, but just a quiet corner in which to concentrate!
While there is no substitute for visiting a community to uncover the jewels within it, there is much legwork that can be done by phone and research. Ideally you want to find what I call an "Intergalactic Congregation." Does the congregation pride itself on acessibility and diversity? On the phone, are they eager, warm, and specific-- or are their words hesitant, non-committal, and general? Good sign: "Oh, we have several older members who need to move about during service." Bad sign: "Well, our services aren't *that* long... no one else seems to have a problem." Good sign: "Is that anything like fibromyalgia? You're describing a lot of the same pain my sister deals with." Bad sign: "Is that considered a 'real' disability?" Good sign: "I'll tell you what-- if you're feeling brave, we've going to set aside a chair right at the front, so you have both a clear view and a clear path to the bathroom. I'll let the Rabbi know you may be getting up and down a lot." Bad sign: "Well... I wouldn't know who to talk to about that."
Do beware of any leader so ignorant as to conflant "distraction" with "disrespect". Any compassionate and responsible leader must consider the distractions that your unusual needs may present to other participants in the service. Any compassionate and responsible leader will want to work with you to choose or find exercises that work for you while create a minimum of disruption, especially to others with sensitivities or special needs, or to the prayer leader, who is in a position of special vulnerability. There is a vast difference between working with you to find alternative solutions that will not impact others so much, and pressuring you to "just sit still and listen" as the only "respectful" form of behavior. That kind of emphasis on conformity over content makes a healthy spiritual environment for no one. We are all made in the illimitable image of G_d. To quote the Most Reverend Dr Desmond Tutu, "There are no step-children of God." It is an act of blasphemous disrespect to G_d to suggest one of His children is too imperfect to participate.
2) Make a ritual out of preparing yourself.
Physical preparation is mental preparation. Try to allow yourself time to wash the night before. Select and lay out your outfit and everything you will be bringing ahead of time. Do and delegate whatever you need to, to make sure you have the time to dress slowly before heading out. Whatever else you are worried about, give yourself the grace of having no worries about how you are dressed and what you have with you.
✶ a) Choose a good bag.
There's no sense in bringing aids jumbled together in one big bag hard to find things in and harder to carry. It is awfully nice to have a special bag reserved for services. Not only is it a practical aid, but it helps with the mindset. A tallit bag, with a simple partition, can be a wonderful hidey-hole for various forms of sensory relief. If you have a handy friend, it is possible to make an "unfolding" tallit bag like a giant version of those lightly weighted bags that hang over chair arms with remotes tucked in individual pouches. In the case of the unfolding tallit bag, the weights hang over the back of the chair or benchseat next to one, individual pouches for various sensory tools and supports hang displayed next to one where everything can be reached without digging. This is a good solution for individuals who need to guarantee a little extra space about them. For those bringing along more physical support, a full backpack hung off a wheelchair, messenger bag on a walker, or a little suitcase on wheels (look for children's luggage) may be more appropriate. Of course, this needs to be customized to one's level of observance regarding the mitzvah of refraining from "carrying".
✶ b) Pack water and quiet food if you need it.
May I heartily recommend Larabars, made entirely of fruit, nuts, and sometimes a little pure cocoa compressed impossibly tight without any preservatives, eggs, dairy, or gluten. They don't crunch or crumble, they give a wonderful burst of energy, and last I checked they were in stock at Costco. I've found nothing better for carrying around to ward off dizzy spells.
Please do slip away from the service into a private corner to eat or drink if your health demands that you do so during a fast.
✶c) Double-check any medication or medical equipment you may need.
This includes extra batteries for hearing aids, personal air filters, or magnification lights.
3) Have a regular seat.
Will you be able to see? Will you be able to hear? Will you be in a draft once they open the windows? Are you facing a glare? Can you get to the bathroom quickly? These are all questions you do not have to keep asking once you find a good position for you and stick to it. Furthermore, by simply sticking to a regular seat, you give your seatmates a chance to adjust to your needs and take care of their own. Remember, they may have sensitivities you know nothing about. (I can promise you, I am going to be moving, fast, away from anyone who pulls a soothing lavendar sachet out of her purse!) There is no need to worry about distracting or discomforting your seatmates when you sit in the same place; individuals who find your needs competitive to their own will simply choose to sit elsewhere and you can take it for granted that those of us who sit near you, don't mind a bit.
✶ a) show up early to secure your regular seat.
As hard as it can be to start my "endurance contest" early, it is well worth the trade-off of knowing that I will be able to get the seat I need and let latecomers choose to fill in around me.
✶ b) call ahead of time to have your seat reserved.
This is much easier if you have needs you can describe simply, or once you have become established in a congregation and they start to be familiar with your needs.
B) Minimize physical discomfort.
Physical discomfort leeches away one's coping abilities. Everything from chronic pain to anxiety disorders becomes markedly worse under the additional strain of even minor discomfort.
1) Bring whatever additional cushions you find helpful:
✶ a) lumber support pad
✶ b) pelvic tilt pad or inflatable cushion
✶ c) tilted wooden stand for your feet
2) Dress carefully.
✶ a) Know your body
Are you comforted by a feeling of your clothing as a sheild and armor, or are you frightened by the feeling of being weighed down? Do you want to feel like your clothing is hugging you all the time, or would you rather not feel it at all? Does the weight of your heavy pendant thumping gently against your breastbone comfort you, or does its motion distract and annoy you? Do lacey edges become itchy and bothersome when you wear them for a time?
✶ b) Dress in layers.
If you are sensitive to temperature shifts, a soft polar fleece coat wrapped over a thin sweater buttoned over a good t-shirt can work wonders. You don't want to be hauling a bulky jacket on and off throughout service, or, worse, have your only source of warmth stranded in the coat room. There is nothing wrong with bringing two tallitot of different weights if you don't know which will be of more comfort to you; a light cotton tallit will not take up too much space. Do not forget the amazing magic of hats to keep us warm-- a good wool kippah can be of surprising help in stabilizing the temperature of thin skin, and it doesn't take up much space to bring an extra kippah, either.
✶ c) Dress to Impress... Yourself
Your favorite clothing is probably comfortable or you would not like it so much. Open that closet door looking for the clothing that makes you happy and proud, clothing that makes you smile when what you are wearing catches your attention. You gain nothing by slumping out the door in those hated pants that are "supposed" to be comfy but that you personally find clumpy, frumpy and embarrassing.
I am going to take a moment here to put in a passionate word about sweaters. There are summer sweaters and bulky sweaters, sleek sweaters and fuzzy sweaters, bright cheery sweaters and muted heathered sweaters, fashion sweaters and lovely over-sized men's sweaters, and they all have a three things in common. First, they follow the line and motion of whatever body is wearing them, second, as long as they are in good condition they look appropriate to any setting, and third, your local thrift store has them for a few dollars each. Best of all, few of them have those trisksy evil little buttons that can be so problematic for some of us. A white sweater tossed over a battered or plain dress makes "a nice outfit" for a woman; a handsome sweater gives a man a chance to make a formal impression without struggling with formal clothes. Sweaters are the supple backbone of a flexible wardrobe.
✶ d) Find silk and cotton
Natural fibers breathe. Natural fibers are more comfortable and more healthy. That said, everything your grandmother told you about the ridiculous amount of ironing linen requires to look remotely decent is absolutely true, and not all of us are up to the committment of caring for wool, angora, and alpaca. Silk and cotton do a good job of being comfortable in moderate temperature, with a wide range of thicker weights for the cold and thinner weights for the heat. "Raw" silk or silk noil is wonderful stuff for most of us. Washable silks show up often at my local thrift store and I hope the same is true at yours.
✶ e) Wear shoes you can slip off.
With my funny fat feet, I have to buy very carefully fitted, comfortable shoes, and I walk for miles in them without noticing them-- which is the true measure of a good shoe. It never fails to amaze me the relief my whole body feels when I slip out of my perfectly-fitted, broken-in, lightweight shoes and fully flex my feet. By the way, you do not have a problem with smelly feet; no one has a problem with smelly feet, we do get trouble with stinky bacterial infestations in the feet and armpits. That's what that smell is. Natural fiber socks and regular use of a mineral rock "deoderant" can go a long way to wiping out such infestations; baking soda and odor-eater products in the shoes help in the meantime.
3) Move when you need to.
As our dear prayer leader reminded us, this means sitting down when you need to. It also means getting up when you need to, to relieve stiffness by wandering out and back in, or standing at the back and stretching (neck rolls can be particularly helpful). Step outside for a deep breath of fresh air. Slip off for a peek in at the children's service if there is one. Do you know where you can slip away to lie down for a few moments? Will folks know to find you there? If you've reached the point of being completely unable to concentrate because of discomfort, then you are not missing anything anyway. Taking in two-thirds of a service, one half, one quarter of a service, is better than staying home and feeling unable to do anything.
4) Do it your way.
If you cannot stand for the opening of the ark, can you lift up your arms? If you cannot lift your arms, can you brace your elbows against your armrest or your sides and lift up your hands? If you do not have the breath to keep singing, can you humm? Can you clap your hands? If you cannot clap your hands, can you tap a toe? Participate! Bend your imagination where you cannot bend your body. Your contribution is an act of joy and is needed.
C) Become an expert at re-focusing yourself.
By concentrating on positive sensations, we can filter out distress and focus our attention where we want it to go.
Signs that we need to refocus include an increasingly loud thoughts of "I can't", or a feeling of mental numbness and inability to think, or a sense of being overwhelmed by discomfort or distractions. Quickened breathing, tightened muscles, even headache, nausea, and severe fatigue can accompany growing anxiety. If you realize the prayer leader's voice is just going "Wah-wah, wah-wah, wah-wah-wah," like the adults in Charlie Brown, that is a clear indication that you need to re-focus.
Sometimes one can re-focus by concentrating on just the prayer leader and the exercise, as when concentrating on a visual focus and letting the words penetrate.
Sometimes one needs to take a time-out from the surface in order to pull together enough to return with a clear head.
Many re-focusing techniques are strongly reminiscent of play; many sensory tools may as well be called toys. That is exactly as it should be. Young children are rawly in touch with their needs and sensory impulses. Remember that a baby provided with plenty of food and a warm, hygenic environment will die if he does not receive enough touch. As we become older, we learn to keep ourselves going past our impulses through memory, reason, and will power. We learn to substitute, we learn to over-ride, we learn a kind of "second-gear" level of operation. It's great for getting things done. We can reach a point where we no longer take care of our sensory needs unless an advertisement, a child, or a puppy is insisting that we do so. Our impulses and needs remain part of us, even as too many of us learn to misindentify our conscious reason as our sole "self". Then, when pain or dysfunction begins to change how we must live, when our sensory needs become a higher priority again, we have the false sense that something that is not "us" is "intruding" on or "hijacking" our lives. Many of the tricks and tips that follow are what occupational therapist call "integration" exercises. They give a us a positive way to feel reconnected and whole.
1) Internal exercises.
✶ a)Speak to your pain.
Pain, discomfort, and anxiety are mechanisms of internal communication; the message is "Hey, something's wrong!" Think of a little child tugging your sleeve, trying desperately to point out something that is frightening her. The longer you ignore her, the more frightened and the harder she tugs at you. She really doesn't need you to do something about what is frightening her, but she absolutely needs to know that you are aware of it. Ignoring your own discomfort and distress will force the part of you that is in distress to redouble its efforts to get your conscious attention-- it is a survival mechanism. Speak to your pain in the same way that you would acknowledge, but not cater to, the fussing of a child. "Yes, I feel this." Say the words firmly in your head. "Yes, I feel this. Yes, this is hard, and I am still here anyway."
✶ b) Breathing
Make sure that you are in an "open" stance, with your legs uncrossed and your hands rested on your thighs. Palm up or palm down, it doesn't matter, although palm up does send a body-language single to others that you are concentrating inwardly. Let your ribcage lift up out of your pelvis. Do not suck breath in, just lean back slightly and concentrate on feeling the breathe ease its way inside and fill you up. Let go of the breath and concentrate on feeling it leave; you may wish to curl your shoulders forward slowly as if deflating. Repeat at least three times in sequence.
✶ c) Pain-control breathing.
Again, open stance, and make sure your ribcage is not pressing down into your pelvis. Let your breath silently and slowly fill you all the way up and all the way down, like a balloon. Hold. At this point you may become sharply aware of your heartbeat in your chest or your pulse in your palms. Count twenty beats of your heart, or a slow, steady, count to twenty. Let breathe seep slowly and completely out of your body until you emptied. Hold. Again, count to twenty in a slow, steady fashion. Repeat at least three times.
✶ d) Know your pressure points
Many people receive relief or distraction from headaches by pressing the web of the thumb firmly, and from nausea by pressing the center of the wrist. I have experienced significant sense of re-focusing from pressure on the breastbone, following this exercise sent me by my friend Kathy Kimbriel. "a general, all purpose pressure point for relieving anxiety and nervousness is CV 17, called Sea of Tranquility. It is located on the center of the breastbone, three thumb widths up from the base of the bone. Just rub gently and try to breathe slowly and deeply." Hugging one's self like a child can also have a surprisingly poignant and powerful effect. All of these exercises can be done discretely within the protective wrap of one's tallit.
✶ e) With a featherlight touch, match up your hands, fingers relaxed and parted, and let the fingertips just barely rub together in little circles. It should almost feel electric, almost tickle. Expand this slowly, always keeping that feather-light, barely-there touch, to let your fingertips take turns sliding up and down the fingers of the other hand. Now part your fingers wider and let them slip between each other and part again. Keep your touch always unbroken but never firm.
✶ f) To relieve and distract from minor aches and prevent yourself from locking your limbs, or hyperextending them if you are vulnerable to that problem-- wriggle your toes! Wriggling your toes is a surprisingly effective way to avoid passing out when stuck standing too long.
✶ g) Rather than perpetually reminding yourself to straighten up, when you catch yourself slouching (which strains a lot of muscles and watses a lot of energy) try a short set of breathing exercises and then work through the tighten and release sequence up to your waist and back down again. The complete tighten and release sequence is also a good way of getting yourself to relax and let go for the night. You tighten the muscles in your toes, tight as you can, tight as you can, tight as you can, release. Now you flex your feet, as tight as you can, then your ankles, then your calves, then your thighs, then your buttocks, then your deep belly muscles, then your whole lower body, as tight as you can, tight as you can, tight as you can, release. This is very good for improving not only your muscle control, but more importantly the capacity of your muscles to relax. Lying down, you can continue by tightening your waist, your diaphragm, your chest, your hands, your forearms, your upper arms, your neck and shoulders, your scalp and face, and finally by tightening up your whole body all over-- and then letting go.
✶ h) Sway
Tiny children, mothers in labor, and our elders in their second childhood all rock themselves back and forth. It is nature and instinct. It is a soothing motion that recalibrates the nerves. Besides all that-- it's Tradition!
✶ i) Visualization
Unless one is adept, it's best to close one's eyes. The simplest choice is to simply concetrate on bringing visual images to whatever prayer or portion is currently being shared. Beyond this, there are many classic exercises in visualization to choose among. The more often one does a particular exercise, the better it works. One is to picture a bright light, an all-embracing light, and feeding your pain and anxiety to the light. My father has great success with assigning a image to his discomfort, and then picturing that image slowly shrinking. Another favorite is to build up a room in your head, a precisely pictured, beautifully furnished perfect room that you can carry with you to be perfectly comfortable in. Many people find great strength in meditating upon the image of a wise, strong, or powerful animal-- a horse that can carry them, a great bear standing guardian over them. A common exercise for cancer patients is to image a predator battling within them, devouring the cancer cells. This image is easily adaptible to many diseases and disorders. Some people do best simply concentrating on imagining the gentle sway up and down of being in a boat, or the free-floating experience of flying- alternatively, the rushing exhilaration of air under great wings. Visualization works because it is a method of reaching the subconcious, and tapping into the great depth of our unthinking mind.
2) Use Visual Tools
✶ a) Inspirational picture book
Fill a purse-sized photo album with evocative or inspirational pictures; baby pictures of your family, or snapshots of Jerusalem, or even close-ups of flowers. If you're creative, you can make yourself a little book. Note that words, even calligraphy, are not processed by the same part of the brain as pure images and do not bring the same relief.
✶ b) Color swatches
Take a trip to the paint store or hardware superstore and build a set of swatches of your own favorite colors, ideally colors you find particularly restful or associate with celebration.
✶ c) Pocket doll
I often carry a little black rabbit called Roadbunny, who has come through his own traumatic past with a distinct expression of "What now?" Time and again I've seen perfectly well-balanced and ordinary adults respond to Roadbunny with spontaneous enthusiasm and delight. It is hard to describe the remarkable comfort that can be gained from a bit of cloth, perhaps because of association with childhood and make-believe, perhaps because of our capacity to endow these silent companions with the ability to understand us, or rather to let us feel understood. Perhaps such toys are a reminder of our powerful ability to define ourselves.
3) Use Tactile Feedback
Touch is unequivocally the most important of our conventional five senses.
✶ a) Silk, Chenille, or Sueded Pillow or Cloth
Bring a square or a palm-sized fluff-filled pillow (the pillow is easier to hold) made of with material you find particularly pleasing to touch. I have a treasured little scrap of calf's skin leather. Rub your fingers against the fabric and slid it gently across your hands, upper arms, face, and throat.
✶ b) Baby's Brush
Brushing the skin can be a powerfully distracting and calming activity, especially used to counteract over-stimulation. I use my old super-soft baby's brush over my forearms and the back of my neck. This is one of the exercises with the highest risk of distracting those around you.
✶ c) The Bag of Beans
If you've seen the French film Amelie you will remember the protagonist glorying in the sensation of burying her hands in grain to feel the many smooth, rounded forms run out through her fingers. Like the brush, this is a wonderful means of counteracting stimulation by attending instead to the feeling of many, many smooth, similar, simple points of contact. Bring a drawstring bag-- a Crown Royal bag is perfect-- filled with small dried beans all uniform in shape. Then slip your hand into the bag, with the strings partially drawn around your wrist, and just let the beans whisper through your fingers over and over.
✶ d) Touch Stone
E carries with him always a polished tiger's eye to turn around and around in his hands or simply hold on to and feel the weight of it. He is famous for slipping this stone into the hand of guests or friends who are in distress.
✶ e) Beads or seeds
Running a string of beads or smooth seeds (lotus seeds are ideal) through one's fingers is very soothing. All the better if it is a bracelet or necklace that you can wear and just reach up to when needed. (Yes, there is a local artist who sells jewelry made out of amazing, exotic seeds-- you can find her in in the outdoor gallery at Pioneer Square on the first Thursday evening of every month.)
✶ f) Knots
Many meditative practices around the globe follow the simple practive of counting through a chain or circle of knots. I prefer using "rat-tail", the strong, thick, silky cord that pendants are often sold on. Rat-tail is availible for about a dollar a yard in a rainbow of colors at your local fabric store. Eighteen is a particularly appropriate number for Jewish meditation; it is the original number of blessings in the daily Amidah and is also the numerical value of chai, life, in Hebrew, in which letters are also numbers.
✶ g) Sucking on hard candy or a cherry stone
This is another steady, rythymic source of soothing stimulus. Please do not chew gum during service-- this involves a different action to the jaw and is invariably much louder and more disruptive to others than the chewer knows.
✶ h) Weighted lap pillow
A round or rectangular pillow evenly distributing steady weight across the legs helps to calm and center. This is part of why the weight of a peaceful baby or sleeping cat on our laps is such a pleasant experience. A five to eight pound weight is appropriate. The principle in occupational therapy is that weighted pillows should be used for no longer than twenty minutes at a stretch; this is a principle I follow although I do not understand the reasons behind it.
4) Use Olfactory feedback
Olfactory tools bring out the heavy artillary. Most people have experienced the way a familiar smell can bring a wave of memories made new. Scent, that elusive, least-developed, least-controlled of senses, packs a whallop when it penetrates. You can tease your brain into reassessing your whole environment by burying your nose in a sharp smell. This kind of stimulus is also potent as a pinprick for staying mentally alert.
✶ a) Pin a posey or corsage to your front... and sneak in as "greenery" a couple sprigs of fresh mint or rosemary. I also love basil, but it doesn't hold up as well. You can gently turn your face to breathe in the living scent as you need it.
✶ b) Keep an herbal sachet handy. The pungent help of eucalyptus, lavender, or mint are especially helpful for jarring your nasal passages into opening and clearing. The gentle, dried-apple smell of chamomile has a relaxing affect for most people.
✶ c) Carry a spice bag - "mulling spices" of orange peel, cloves, anise bring the pleasant-crisp smell of spiced cider.
5) Human contact
We can be one another's best support and best stimulus. There is a powerful strength in the most simple of human contact. Touching hands, not even touching hands but simply leaning together. We do not need to fully understand one another to be there for each other.
Good human contact requires good relationships. It is especially difficult, and especially important, to build stable and healthy relationships as we try to build up our own health and stability.
✶ a) Remember always:
You are a Warrior, not a Whiner.
The individual with disabilities and sensitivities often comes to relationships with a strong sense of having less to offer, of being too different to be close. The key is to never let yourself forget that you are a Warrior, not a Whiner. You are not your diagnosis. It does not matter what that diagnosis is, it does not matter if it penetrates every aspect of your life. Even if every interest or passion you have, everything you've ever learned, every memory you've ever cherished were stripped away from you, even if you were left with nothing else, you *still* would not be your disease, disorder, or difficulty. You are how you handle your difficulties, and your blessings, just like everybody else.
So don't introduce yourself with a diagnosis. Don't define yourself by your difficulties. Don't let your passions, your life-lessons, and your memories be stripped from you. Don't introduce yourself with an apology. You do not owe virtual strangers an explanation for why you are as you are and do as you do; quite the opposite, they have an obligation to earn your trust and comfort, to share their own vulnerabilities, before asking any intimate questions. Save up the priviledged, intimate information on how you are doing for the friends you are most confortable with, the ones who can help you remember how much more there is to you. If a stranger asks you about your exercises or equipment, you can lift up your head and say, "Services are challenging for me, but it's worth it to me to be here, so I find a way to cope." This statement satisfies the concern and the curiousity that are natural to good people while reminding you to be proud, and not embarrassed. It does not hurt to add, "It's good to be part of such supportive congregation."
Too often we make a trap for ourselves by providing bouquets of elaborate explanations and apologies to anyone who will take them. Sometimes other people can't get a word in edgewise. In doing so, we create a false impression of not caring about others! This approach can only increase our sense of helplessness and isolation.
✶ b) Develop Conscious Listening
Remember that listeners are a precious resource. When you practice maintaining eye contact and simply drinking in words without thinking of what you will say in response, you are offering those around you a vital form of connection. You may not be able to help them move, or spend an hour on the phone with them every week, but by making the five or ten minutes you are together really count by really listening to them, you can become a precious contribution in the lives of others no matter how limited you feel.
✶ c) Cultivate Small Talk
Small talk need not be unimportant talk. Properly used, "small" talk is a time of easing into the water, finding common ground, learning enough about the other's body language and tone to feel comfortable communicating. Strong small talk skills help you "rescue" a stranger who finds herself talking about something that makes her unhappy-- as many of us when invited to talk bring up our worrys about work and the world, even on Shabbos! I keep a tiny repetoire of my small talk favorites: "What do you enjoy about our Northwest?", "What interests have you been pursuing lately?", and "Do you live by yourself?" "Do you live by yourself?" is a favorite of mine because it gives the person living with family a chance to talk about them, the person living alone the chance to be proud of her independence, and the person looking forward to moving out on their own or into a new situation a chance to talk about their plans. It is a very flexible question, with few pitfalls. That is what makes good small talk. Good small talk makes good ground in which to grow strong relationships.
The Intergalactic Congregation: A Challenge for Leaders and Community-Builders
Some of us can't do what most of us can do, but that should be no obstacle to learning, living, and community.
The doors of our learning and spiritual institutions should be open to people of all abilities. It seems so simple!
But, for that door to truly open, it is necessary for whoever holds the key to that door to realize:
We're not just talking about some of us who can't do what most of us can do.
We're talking about gathering together people from different worlds.
This is not simply a question of "politically correct" speech. It's a necessary step towards real understanding. A deaf person does not merely lack one isolated ability; a deaf person lives in a world of deafness. It's a world where the motions of vocal speech can seem grostesque, faces splitting open and the all-important communication of facial expression disrupted by what looks like eating air. It's a world where turning away is as rude as slamming a door or hanging up a phone in mid-conversation. It's a world where anything one is not facing, might as well not exist, as if there were a black hole perpetually hiding behind one-- because there is none of the subtle, unconscious continuous sounds that actively remind the rest of us the world is there. Think of how nonsensical it is that the sun and moon and stars make no noise, but a street lamp does, and a flourescent light does, and a fire does, but an incadescent light doesn't... and that a deaf person can go through his or her entire life without knowing this.
A person in a wheelchair lives in an entirely different America, an alternate America of far fewer spaces and vaster distances. Imagine if every visit to the doctor required a four hour road trip, imagine needing to travel into the next county to bring home groceries. Imagine new furniture requiring all the planning of a trip out of state. Imagine living in a culture where you can go all day without anyone looking you in the eye.
Congenitally blind people often live in a shockingly intimate world, a world without a sense of distance, but rather of separations only by effort. The store is a little effort away, the doctor's is much more effort away. It is a world profoundly here and now, as if one's life were a little room. Other people are either right there, or gone. "Crowds" are an awkward or impossible concept for many blind people. If seven or eight people are too many to listen to and navigate among, then there is no refined difference between a group of dozen, a hundred, or a thousand people, it's all just "too much." It can be difficult for blind people to remember that silent people are present. Many times I have seen one blind person accidentally monopolize a meeting despite the best efforts of the meeting moderator, because the blind person experienced the meeting as a series of direct conversations with whomever last spoke, being unable to see the vast body of people waiting to speak.
The person with a neurological disorder lives in a world where range of sensory experience tends to push out to the extremes-- sounds just out of hearing or overwhelming, sights out of focus or looming. The person with Asperger's is an ambassador to an alien culture where everyone wears masks and operates by an unending, unwritten, intricate system of ettiquette that he must learn by rote. The person with post traumatic stress disorder lives in a world in which monster are very real.
When you begin to see these worlds, you begin to see the different worlds we pass through in different stages of life. The world of the woman in late pregnancy, its gravity twice as heavy as our Earth's. The ferocious weather of the world of the elderly, where long stretches of ice must be navigated even indoors and earthquakes and wind storms are a daily occurance. The blurry world of the convalescent, where time seems so distant; the washed-out and thorn-strewn world of the recently bereaved.
The goal of the Intergalactic Congregation is not to "allow in" people from any world, but to become this great gathering of worlds. The goal is not to tolerate, but to embrace and incorporate this greater breadth of perspective, experience, wisdom. The goal is to be a garden for all varieties of hope, not only common hopes but rare-seen hopes, strange hopes and fragile hopes and blossoming hopes and delicately fading hopes.
This requires a bit more than investing in a couple of large-print siddurs.
It requires a willingness to take nothing for granted. The woman who has her eyes closed and is fiddling with string in her lap may be the member of the congregation who is paying the most attention to the Torah Reading. The man who stepped out of service five times may be the member of the congregation who got the most from attending today.
It requires the complete surrender of the basic assumption that "difference" or "strangeness" in and of itself is wrong or disharmonious.
It requires a bold new assumption: that whatever an individual says about his or her world/perspective/needs is presumed to be truthful and accurate for him or her even if it is nonsensical from a mainstream perspective.
It requires that community leaders give up the excuse that "she should know" or "no one else has to have it spelled out" and take the responsibility of stepping forward to kindly and directly tell a member of the congregation when his or her behavior is disruptive, and to work with him or her to find an alternative.
It requires encouraging and guiding a kind of buffet environment, where there are quiet corners and chaotic corners, intense corners and casual corners, so that the goal is a spectrum chord of glory rather than a homogenous pure tone.
It requires an absolute committment to a frangrance-free environment, and to educating, and re-educating, the congregation about what this entails and why it is necessary. There are a lot of on the spot work-arounds that can be done for a lot of disabilities and sensitivities, but no one can work around breathing. I have seen a woman spontaneously hemorrhage as someone walked by her wearing rose water, one of several completely natural frangrances associated with dangerous averse reactions. Spontaneous hemorrhage is such an adverse reaction. Anaphylactic shock is such an adverse reaction. Days of being bedbound is such an adverse reaction. "Scent-sensitivities" are scary, scary things, and like autism and breast cancer they are becoming more common at an epidemic rate.
The three steps to being frangrance-free:
1) Refrain from scents for their own sake: perfumes, colonges, scented oils and resins, even if they are completely natural
2) Refrain from strongly scented personal products: body lotion, shampoo, bath salts
3) Refrain from wearing clothes recently exposed to tobacco smoke or incense
Becoming an Intergalactic Congregation does not require "understanding" everyone. Instead it requires pursuing the spiritual path of nonjudgement as a community team. One should not have to understand someone to respect him or her. An Intergalactic Congregation should have the goal of respecting everyone.
Becoming an Intergalactic Congregation does not require "taking care of" everyone. Quite the opposite, it requires empowering all members to take care of themselves.
"Choosing to Endure" is dedicated to Congregation Eitz Or of Seattle, Washington, my own Intergalactic Congregation without whom it could not have been completed, and also to the Abilitations Company, who gave me so many ideas and tools in my own long battle with chronic pain and sensory dis-integration.
- Tree McCurdy
Elul 5768